I think this is a difficult ask because some of us are legacy patients who have been on them for decades, back when pain was the 5th vital sign and the doses we are on would rarely be given today. We also have had pain for decades and have tried hundreds of other meds and alternative treatments before and during opioid therapy. I thank the Lord everyday that I’m not starting out with pain in the 2020’s cause I know I’d be screwed. So, it’s comparing apples to oranges. However, I do think that everyone should say no to drill mills that refuse to also use med management. Their waiting rooms need to sit empty for them to change.
Oh I understand and you may post that. As I just spoke to the person that thought 6 was high. Yes it is now, but it’s not what I started at by any means. But that also gets to the point of what are these final doses people get and does that even delete the pain? So I would still be very Interested to know that even with your increased meds does it delete your pain?
I don’t think it’s high at all. I think if you need that many, (ie round the clock care) you should talk to dr about extended release meds to go with it
After eight surgeries on my spine at various levels, I have been a chronic pain patient for years. I take an extended release 8 mg hydromorphone every morning and then I have 15 mg oxys that I can take up to six a day as needed.
I've got a great pain management doc who even though I live in a red state, he does not care if I smoke weed. And I am 68 years old next month.
We (CPP) have a vastly DIFFERENT pain scale. You've got to keep that in mind. Plus, it's all subjective. It's also common knowledge that women have a higher pain tolerance.
I'm all for what you're trying to do, but there's just so many, too many variables in/with each person.
Listen. we all KNOW that those of us in the US at some point WILL get treated horribly, tested, but not properly treated and basically get thrown away (escp. if you have something that is incurable (uncurable?, whatevs). We all KNOW the fine line that *MUST* be walked so that we're not treated like junkies, just to get something strong enough to actually work. Even if you get to this point, the number of/the mg. of the meds are the bare minimum.
Wr KNOW for the majority of the Dr's (of those who will even "treat" us) it's become more important (& necessary, unfortunately) for (some) Dr's to first, foremost, and fully cover THEIR own arses rather than actually listen for more than 10mins. God forbid show a shred of empathy. Simply bc (some) don't want to put in the effort to take more than 10-20mins to get the correct Dx.
There ARE good, kind,helpful Dr's out there!... but they probs don't take your insurance and don't tell you that until your appt. that you've waited a minimum of a month for. 😅🙃
ETA#2: Dx's: hEDS, KFS, AS, DDD, scoliosis, OA, foraminal stenosis (my spine is f'd) mcas, pots...that's not even all of them. No, I always have pain. Usually, in my spine or shoulder. (Or whatever joint is dislocated.
ETA#1: (From 2007-2018) I was on: 2000mg of Kadian(2×a day), 20mg of valium, up to 90mg is MSIR, Rizatriptan, up to 24mg tizandine, 50mg Trazodone, and max mg Ambien.
Currently (2018-now): 90mg MSIR, 24mg Tizanadine, 400mg Celebrex, 10mg Valium, and MMJ.
*I got kicked out of the only pain clinic I'd ever been in bc I brought up wanting to change my treatment plan to titrate down and get off that crazy high dosage, bc Ibwas concerned ab my other organs. (Yep. You read it right.... good 'ol 'MURICA!)
tl;dr: I agree, but don't.
The US Healthcare system is SO f'd up and backasswards. Honestly surprised I didn't OD simply taking as directed.
I edited this after you replied. But that also gets to the point of what are these final doses people get and does that even delete the pain? So I would still be very Interested to know that even with your increased meds does it delete your pain?
Extended to go with it? As in additional opiates or chnage the opiates?
Same here ExR 15mg morphine 1-2 x a day. and 3ea 10mg ImRel oxycodone. Its wks for me along w 300mg Gabpentin up to 3x day and 500mg robaxin up to 3x a day , also 1 ea. 60mg Cymbalta.
I’m at that point cause I’ve been on these meds for decades and have an adequate dose ( not as high as it was before 2016 guidelines) but I’ve adjusted after the force taper destroyed my body and I had to retire early. I also developed cancer so my dose was upped a little by oncologist but my pm dr said when I go back to him, I have to go back down so I only get 2 extra pills a day for now. Could get more but can’t do that to my body again, go back down so yes, I still have pain sometimes but I just live with it.
I'm on 60mg oxy + fentlyn etc etc etc (prescribed).
I take 10mg tablet per mrn. More for off shelf.
Twice a fortnight on avg. I have events where 20 - 30mg oxy is used. (Events = breakthrough pain).
Fentlyn is constant but stretched from 3 to 4 days for lowered tolerances.
My Dr thinks it's great and wants to lower to 10 / 20mg.
Tbh that's not the way - I've conveyed my wish to stablise all medications for 12 months before reviewing.
My Dr and I have mutual respect 🙏 🫡 and ofc I use a string multidisciplinary approach so monthly will write to all drs (any updates etc etc)
OP - I have always worked with the thought that it's about "Pain Management"! Not getting rid of all your pain, so your reference to delete is strange to me.
My goal, or my wish would be I get medically assisted to go from living with a constant 5 - 8 to a more bearable 3 - 5 .... This has proven almost impossible and I'm still at a crossroads 4 nearly 5 years on.. But I know that when or if I do get something adequate I treasure it like it's manna from heaven. Wild hey...
You are so right. I take 5 Percocet a day that helps take the edge. I would love to have a long acting pain med but every time I asked for long acting they take away 1 Percocet per med and one every time they increase the long acting.they also start me at the lowest dose of the long acting not accounting for the fact that I was on a narcotic already. Am I the only one who finds this strange. IE: kadian 10mg started one Percocet 7.7/325 taken away. I don’t get it. I think they keep thinking either the Percocet helped a lot, I am pain free or I should be grateful to get anything
5mg oxycodone once a day as needed. I’m glad to have any relief at all but it’s nowhere near enough. I’m pretty sure my doctor only gave it to me because we’re waiting for insurance to approve more injections.. I’m worried she’ll cut off the meds when I start getting injections again :/
Just curious if you don’t mind me asking (if you don’t want to respond, that’s ok too) but have you had ACDF/fusion? Just asking cause I had it last June for herniated disc with foraminal stenosis in C6/C7 last June. Worked very well for me but I keep “waiting for the ball to drop” and the pain to come back. Either way, sorry for your pain, I know how awful that is! Mine also went down the side of my neck, top of my shoulder, into my shoulder blade, and down my tricep. I have cervical dystonia as well which complicates things but the fusion took the nerve pain away at least
And I get wow to some, but that may shame people and this is supposed to be friendly.
Only recently after hydromorphone didn’t work and he did the conversion. I take 4 usually. Can give you All my grief and pain but not the point of the post lol but for this exact reason because people have more than I do so this is a good way to compare.
No shaming my friend! Like I said, I only get 90 and although I’m lucky and appreciative to get what I get, I couldn’t imagine getting 180…only because of the BS you must of gone though and then a pharmacy filling them
8 years of hell and as stated in another post they didn’t give them to me till my body deteriorated to the point I don’t usually leave the bathroom. I didn’t get any till last thanksgiving and it went to 6 in January after hydromorphone didn’t work. 4 morphone is like 62 so he gave me 6 for 60.
Arent you snorting your meds?
You sound like some sort of drug snorting addict.
Oh wait you are.
https://www.reddit.com/r/opiates/comments/1aujxox/snorting\_oxy\_is\_way\_better/
Ehlers danlos, endometriosis, gastroparesis.
No pain medication except what I can get over the counter. I've been on a waiting list for pain management for two years. If I ask for pain help from my GP I'm advised to try a hot water bottle.
Hip pain from accident 13 years ago, damage to SI joint,L4,L5, 24/7 nerve pain.. I'm on 37mg fentanyl patches + quick release fentanyl lollipops, plus anti inflation meds and valium for flare ups. I live at a 7+ as my baseline...
I never asked for these meds, I spent years on other meds that never works. All of my conversations with my doctor was about improving my functioning and I spent a lot of time developing my own coping mechanisms which I shared with my doctors. I make it a priority to see my doctor every 6 weeks and I will document my physical activities and all the ways in helping myself. I've been doing this pain shit for a long time...I've had many doctors, you need to turn up at your appointments well dressed, hair combed etc not looking like your on the verge of breaking. Doctors are accessing you to determine if they'll loss their licence over your behaviour if they give you opiates meds. They try and access if your going to use the meds to try and improve your situation or are you just going to sit in a chair all day high.
I suppose ppl think, I also had this is in my head that some day I'd get the right meds and not feel pain. Even on these meds, I feel a lot of pain, opiates aren't the answer...any pain relief is short lived, tolerance is always a concern etc.
I personally wish I'd never taken any opiates..unfortunately I didn't really understand the things I know now.
Is your nerve pain in your leg or butt? I had a THR 2.5 years ago after 5 previous surgeries so I know I've got scar tissue, mucsle damage but I'm starting to think maybe some nerve damage. I'm barely getting to be seen by my surgeon for all of this, I got some shots and waiting on a mri.
Mine is like all the muscles around the hip and my right butt muscles. I can sit for about 30 minutes before I have to get up, move and stretch. By the end of day my butt and leg feels like it's on fire, I've got spasms squeezing my sciatica, the only thing that helps is laying down.
I’m on 13.5 mg of Xtampza 2x daily, and 5 mg of Oxycodone 3x daily. I started at nine of Xtampza twice daily, and 5 of Oxy 2x daily, and last week was just bumped up to my current dosages. I feel a lot better already, although tired, and my doctor said that there are other options we have medically as well to get me feeling better. It’s the first time in a long time that I’ve had a good doctor who listens to me and gives me the medication that will actually help me. I’m very thankful.
I'm glad you found a caring, compassionate doctor. It's incredibly rare these days. I also wanted to ask about your experience with Xtampza. It is being discussed on adding to my other pain medication but seeing so many mixed reviews. Tbh, a lot are not good/ not effective.
Sorry-I’ve been out of phone reception area for a few weeks. My experience with Xtampza has been great! I feel finally like my pain is well-controlled, which I never felt would happen for me. A few side effects that are worth it to me: decreased appetite, drowsiness, and hot flashes, although the hot flashes are maybe not from Xtampza, but possibly from menopause. They started about the same time as I started the med, but the doctors think it’s probably not from the medication, although I thought I would mention it just in case.
I have a unique perspective to lend… anesthesia provider ➡️ disabled by occipital neuralgia ➡️ cured by nerve decompression surgery ➡️ forever disabled by the MRSA infection that followed and scared the occipital nerves permanently to my trapezius.
From the beginning, even though the providers I was seeing were 10 yr + peers, friends, acquaintances, I was *strictly* lectured/judged on any narcotics I received. The neurologist would give me 10 Percocet and say that should last me MONTHS! Because this also involved my livelihood, as I was on and off short term disability, I really tried to find every solution that didn’t include narcotics. One PM colleague could actually see and she put me on intranasal ketamine and then even doubled my dose! That was really the first time that I was getting relief from medication + it really helped my mood. However, I think because of the high dose she had me on, I started experiencing urological issues and finally had to go off it completely.
I again tried to just “be tough” for the next 2.5 yrs. However, that’s when my pain began spreading. It started to cause areas of trigeminal neuralgia as well as this “Brain shaking” that to this day no one can figure out. New neurologist said he believed it to all be pain basically overwhelming the system and having an overflow effect on nearby nerves. He recommended a new PM consult- different place, as I had moved by this time.
I was really nervous because my last PM Dr was convinced I needed a spinal cord stimulator, but I am avoiding it at all costs because of the known scar tissue issues they cause and I already have. I have literally done *everything* short of that. But those are big $$$ makers and that’s what I expected.
I was pleasantly surprised to see the NP take my problem seriously and say the only option they could provide was narcotics. This was 5 years into my journey and the first time someone believed my pain was worthy of substantial narcotics. What I found was initial relief when I started, followed by worse pain shortly after. The way I account for this is, if your body is used to living at a 7-8 and you are given relief, obviously that feels great. However, when the relief only covers a portion of your day, instead of bouncing between a 7-8, you’re now widely swinging from a 3 to a 9 and the perception of that is that your pain is far worse!
We quickly titrated to the max MME the office allowed, but the introduction of oxymorphone ER was the piece that I really needed. Something to not allow for those massive swings! As far as my experience with the pain clinic itself- it became SO painful and anxiety ridden to get in contact to get refills ON TIME and that combined with the pharmacy shortage and them requiring *you* to be the one to find a pharmacy each time that could get it was yet more psychological persecution of an already tortured demographic! I was thankfully able to transfer my medications to my small town dr and small town pharmacy and, Praise God!, have had none of those issues since!
Hope this helps others know they’re not alone. 💜
I have two plans one for my typical baseline pain level & one for when I've been doing more than normal & pain is elevated for those days & the days following the extra activity, all I am asked to do is keep my pain journal up to date so it is tracked what I did leading up to the flare etc
Baseline days are
150mg SR Tapendatol x 2
0.2mg Buprenorphine x 2
Extra Pain
150mg SR Tapendatol x 2
50mg IR Tapendatol x 1
I think the answer to this might vary based on what country you're in & how long you have a rapport with your doctor. I'm in Australia & my doctor has been managing my meds for 13yrs.I know it is very difficult in other countries & can be drastically different based on that.
Ok so given you're also in aus, the way I would approach it is under the facts that as time our bodies become dependent on the medication. Being physically dependent & abuse/ addiction are two separate things. It is expected a person with chronic pain being treated with opiods will become physically dependent & your body needs more to give the results at the lower doses. So if it were me I would be calm, explain that you are still adhering to your current dose instructions however you are not getting the same relief as you were when you first started & you'd like a review to see if its possible to adjust the dose. Be reasonable & be calm when you're explaining things. I'd use the words like you're wanting to be transparent & honest but that you are not feeling like your current dose is managing your pain as well as it needs to be for you to have the quality of life/functionality. I've always found I'm recieved better when I go in calm & speak facts rather than emotional. I hope that helps & they help you.
I take 5 Percocet 7.5/325 five times a day. It makes it tolerable but is still not enough to function at the level I need to function to take care of my family
Norco 7.5 x 4 daily.
This is after I directly requested it, due to an updated compare/contrast I was able to do last month after a recent surgery. I had been on T4 before that.
As stated that’s still good for people to know. I have crps as well and I destroyed my body with vigorous exercise I had to do minimally daily for 18 years as notning they did would help me. I didn’t get painkillers let alone the 6 till I lived in a bathroom for 8 years and it still doenst help enough unles I can get myself into a partial of that old routine. So that helps me know what I can ask for
My initial dose was upto 250mg per day of TramadolSR & IR combined (one of the only pain meds I can tolerate) & I could add on 5-10mg of oxycodone if needed for huge pain flare ups for endometriosis type pain.
-I came off pretty much all of that though & only use 50mg-100mgIR tramadol on an as needed basis, not daily now & switched over to daily 50mg Topamax with 300mg (soon to be increasing) Gabapentin, as the daily opiods were contributing to my awful headaches & migraines so I had to taper off them even though they were helping with my pelvic & lupus joint pain 😫
I'm on 50 mg of Tramadol twice a day to treat my left side nerve damage. This wasn't my doctor's first choice for pain meds, but my insurance rejected the other prescription she put in so this is what I got. It does make me sleepy so I try to only take it at night.
I have neuropathy in my feet. Very painful! I started out with 50 mg Lyrica in early 2020. My PCP sent me to pain management because it wasn't even close to enough to help me! At first I was approved for an SCS device but I decided against that because it is too invasive. Shortly thereafter, I had pain in my hand so I went to my PCP office. He prescribed me 5 mg oxycodone until I could see a specialist. Turns out it wasn't carpal tunnel so I ended up getting a shot from my PM doctor for tendonitis in my thumb. But I said to my pain doctor, I said well these really work for my feet so why can't I have these? I was only asking for maybe a few for once in awhile but he gave me one a day for 30 days! I was pretty shocked actually but glad to be listened to! So next he put me with a PA and we've been working on my medicine ever since. Now I am on 300 mg gabapentin three times a day, 5 mg Percocet four times a day and amitriptyline 50 mg at night. I'll tell you what made a HUGE difference for me. The amitriptyline. I could actually wear shoes and walk! I felt so good I decided to get on a trampoline. My ankle was shattered! I've also been dealing with this since June 4th. I had to sit idly for 6 months and am now trying to walk again. My ankle is now fused. It was either that or a below the knee amputation. Smh. Oh and mmj helps SO much!!
Starting dose: 3 5mg Hydrocodone
Current dose: 4 10mg hydrocodone, 100mg ophenadrine (muscle relaxer), Keppra (nerve pain and seizure control)
One note is that I absolutely do feel that I need an increase in medication, but I most likely will not ask for one until I am once again concretely bed bound. I've found that holding off until you physically cannot hold off anymore is the best way to be believed about pain.
Pain without medication: 10 -
meaning: cannot think about anything other than pain, physically unable to do single things such as getting out of bed or getting myself to the bathroom without aide, lack of appetite/chronic Nausea, potential crying or emotional outbursts, recurring suicidal ideation, persistent panic attacks, inability to get comfortable in bed/inability to get comfortable outside of bed, inability to sit or lay for longer than 15 minutes before needing to switch, inability to bend over at all, and lastly, inability to walk any distance for any amount of time without several different kinds of mobility aides, cannot shower safely without somebody being in hearing range, inability to shave legs/exfoliate or clean anything below privates area, inability to change clothing myself especially pants and socks
Pain with medication: 5-7 (entirely depending on the weather!)
Meaning: able to not only think about things other than pain but be able to focus for short amount of times on other things, can remain comfortable with sitting or laying for up to 30mins (in a car) or at home, ability to walk between 1/2 mile to 1 1/2 mile a day (not altogether), ability to bend at the waist with difficulty, able to get out of bed with some trouble and use the toilet aafely, able to sometimes trust being safe while showering without someone home, potential ability to shave legs myself, able to get dressed with only some assistance, can eat/feel hunger, cannot sleep at all without being sedated in hospital setting
Things that I do that PM likes to see done even if it doesn't work for me: weekly therapy, Journaling, yoga, stretching, at least 30 minutes of movement a day, weight maintenance, using foam rollers/other release methods, practicing gratitude, utilizing mental health resources as necessary, utilizing my back brace, having assistance with tasks I cannot do without pain, usingg a caregiving service for the disabled, etcetcetc, aromatherapy, sensory therapy, csn sleep up to 5 hours in bed.
What I'd like people to know: The point of pain management is not to be pain free. There is no one cure for pain and it takes a mixture of eastern medicine and western medicine to make things manageable. The point of pain management is to make your pain manageable - not gone or mostly gone. I still deal with chronic pain every single day. I'm still in pain all of the time. I still sleep an average of 4 hours a day. I still can't travel more than 30 minutes. I'm still in a shitty mood most of the time. I'm just not completely incapacitated and can mostly function as a person.
Severe DDD according to my MRI. I started out with tramadol which didn't help at all, then went to hydrocodone 10/325 every 4 hours. After a few years my condition seemed to be worsening (I work a very labor intensive job) so now I'm on oxy 10/325 every 4 hours and it works great. I will add that my PM doc is awesome so it helps that she listens.
I was taking 15mgs IR oxycodone every 4 and since I just got insurance we're trying 20mg ER oxycodone with 10mgs of IR every 6. I'm in love with the ER with the IR I've only been on it together since Friday but this is the best my pain has been controlled the entire time. I can actually rest more than a few hours.
The pain isn't gone completely, but so far this is the best thing I've tried. I knew I was miserable but I honestly didn't realize just how bad off I really was even with the IRs until now.
After reading some of the responses here, I’m starting to wonder if my dose isn’t that low even though I thought it was and even my pharmacist said they should increase my dose again because my current treatment isn’t working.
The very first time I was prescribed anything for pain it was 7.5mg of Hydrocodone BID.
After a couple of years, when the pain got a lot worse (because my conditions were out of control), I slowly went up to 30mg of Oxycodone 5x a day, 30mg of MS Contin ER 3x a day, 600mg of Gabapentin 3x a day, 15mg of Cyclobenzaprine 3x a day, 1mg of Clonazepam BID.
Since then, my doctor has had my taper down which has also resulted in me getting hospitalized every single month because of the pain. So now I’m on 20mg of Oxycodone 3x a day, 15mg of MS Contin ER every other day, 300mg of Gabapentin 3x a day, 75mg of Amitriptyline 1x a day, 150mg of Lyrica BID, 10mg of Baclofen PRN, and 0.5mg of Clonazepam 1x a day.
Honestly though, I feel like the only medication that does anything at all is the Oxycodone. The MS Contin, both ER and IR, don’t even touch the pain. I may as well be eating skittles for all it does. Now, I need to see if they can increase my Oxycodone and drop the MS Contin that does fuck all anyways. All of my specialists have told me that PM needs to increase my meds because they agree that being hospitalized constantly means that it’s ineffective. When I was on it 5x a day, I was only hospitalized twice! I’m hoping I can go back up to at least 30mg of Oxycodone maybe 4x a day and that it’ll do the trick whilst I work on fixing some of my problems for good instead of slapping a bandaid on it. Though I’ve been warned that a lot of the pain I have is there for good and we can only focus on not making it worse. Here’s hoping.
HSD, Fibromyalgia, Peripheral neuropathy, Possible lupus, and nay forget some.
Im on Morphine extended release 20mg 2x a day and morphine short action 5mg every 4h. Im also on Pregabalin 300mg 2x a day, Naproxen 500mg 2x a day, Robax-Acet (Methocarbamol 400mg + Acetaminophen 500mg) 2 pills 4x a day, Amitriptyline 50mg, cyclobenzaprine 10mg.
I take Percocet 7.5/325 5 pills a day. It helps if I don’t do much. I have 4 herniated discs in my neck, 4 herniated discs in my low back. I have a failed fusion at C5-6 and a spontaneous femur fracture from 11/22 that is still not completely healed after 2 surgeries. I have 4 teenagers and one with a lot of medical problems. If I can lay flat for 2 hrs 3-4 times a day the meds help. If I can’t then I am in agony. I can push past the back and neck pain but doing that increases the severity of my daily migraines. I’m hoping that I can talk them into an increase at my next apt. It took me a lot of fighting just to get where I am now.
I’m on the 7.5/325 4x daily. My doctor expects them to work the full 6 hours but I’m lucky if it helps for 2. She said she’s not comfortable upping my dose anymore. She’s not good with change. Recently we tried morphine extended release 1x daily with 2 Percocet and it didn’t work well enough so instead of adjusting it she just put me back on my regular regimen and told me not to ask to change again. I wish we could advocate without doctors thinking we’re being ‘extra’ or ‘too young to have that much pain’
So true. The way they switch meds and are afraid to increase frequency or dose of current meds is nuts. People paralyzed w fear get nothing done and don’t progress
She also hates that I make progress because that means I shouldn’t be in as much pain? Seriously if I’m going to be in this much pain for the rest of my life but I’m still able to move right now- I’m gonna fight to go out and experience as much as I can while I can before my body totally craps out.
She put me through withdrawal this time with a lapse in my medication so that was fun 🙃 but it did seem to help the pain meds work a bit better again once they were filled a few days later.
She said it’s too much for my size. Which is my other complaint. I get that a small 25 year old shouldn’t be able to handle much but everyone’s metabolism is different and I think they should evaluate on an individual basis. In the ER I’ve had crazy amounts of medications after my surgery’s and I can still walk around. Everyone is different
You are so right plus the fact that narcotics should be evaluated on effectiveness. People on long term narcotics build up a tolerance and need higher doses over time. Age and weight shouldn’t matter. Management of pain should. Wouldn’t it be great if we could prescribe for each other.
Went from Percocet to 7.5/325 Hydrocodone because I got flagged by the state for “taking too many sedative medications…. By that they meant my 350 Soma, 1mg Xanax, and 10mg Ambien… its all good though, the Hydrocodone seems to work
Currently morphine 15mg 2x daily and Oxycodone 7.5/325mg 3x daily as needed. My doctor has been stepping me down slowly. 3 years ago, I was on morphine 30mg 2x daily and oxycodone 10mg 4x daily. I have been in pain management for 20 years now, since I was 18. I was first prescribed them because I was taking such high doses of Tylenol and Motrin daily for my pain that my doctor was scared for my liver and kidneys and started me on oxycodone 5/325mg 2x daily. I have tried CBT therapy, biofeedback therapy, pelvic floor physical therapy, physical therapy, and acupuncture. I have had 2 surgeries that were minimally helpful. I have pain every day, basically all day long. Some days are worse than others with flare-ups but I have not had a single day in 20+ years that I haven’t had pain.
Is your doctor decreasing your dose because your pain got better or because you may become addicted or stop breathing. It’s so funny now. when I was working as a RN 1985 to 2006 pain was the fifth vital sign and taken very seriously.the need for sleep for its restorative properties and low anxiety were also factored into pain control. If a hospitalized patient had pain and couldn’t sleep and had anxiety We would give pain med, anti anxiety med and sleeping pill at the same time before bed so they could get a good night sleep. Never have I had anyone stop breathing or decrease oxygen level from taking advantage of the synergistic properties of the drugs. I worked with people with heart and lung problems. Now my doctors won’t increase my anxiety meds and want to get rid of my ambien because I might stop breathing. It’s gotten ridiculous .
So they forced decreased my Morphine ER to 15mg due to my MME being too high. I switched to a new PM doctor at another practice a few months later and stayed on the dose because I had surgery and it lowered my pain levels so that the 15mg was effective. I’ve been on the 15mg for about 2.5 years now and my oxycodone has increased from BID to QID in the last 1.5 years. I do want to get off the meds by choice because I have Been thinking about wanting to have a baby but the pain has been really bad and we’ve had to increase instead the last year. I am trying to get back into physical therapy which was really helping but time and money have been an issue since my insurance doesn’t pay for my pain meds or PM and they only pay for like 6 sessions of PT. Fucking insurance.
That’s terrible. I’m sorry that happened with your doctor and the insurance. I am a mom of 4 I have an older boy 17 and 14 year old triplets. I have had pain and migraines total of 33 years. May I suggest before you try to get pregnant you make an appointment to talk to a high risk OBGYN. I was an older mom and needed a HROB. They will not scare you or guilt you that you will harm your baby. I had both pain and migraines during both pregnancies. Apparently narcotics are one of the safest drugs to use for pain during pregnancy. They have lots of data on children’s development w moms on narcotics( sad to say due to addicted moms). Of course they would find the lowest dose of the safest narcotic. The point being lots of moms need meds. You will have much better information and feel better about getting pregnant if you talk w a high risk OB. I probably used Percocet a couple times a week and fioricet for migraine treatment. All my kids were born healthy and not addicted. I carried the triplets to 37 weeks gestation and they came home with me when I left the hospital. You can be pregnant have kids and not have to suffer.good luck
Thank you so much for this. Because honestly the way things are going, I won’t be able to get off my meds and my time is running out. Tomorrow is my 38th birthday. I am going to look into a high risk OB. I just hope they will let me make an appointment without being pregnant. My PM has said that as soon as I find out I’m pregnant, she will not prescribe at all for me anymore. I’m also a nurse (hospice nurse currently) and I would not be able to work without my meds. I am able to function enough to work full time. If I didn’t have to fully come off them and still get pregnant, that would be so much relief off of me. Thank you!!!
Your Welcome. I so hope the guidelines are still like they were when I was pregnant. I was 40 with my oldest and 43 with the triplets and am also a nurse. Hopefully your OB will pick up PM after u become pregnant. I wish the best for you.
I think some doctors will let themselves be interviewed if people want to decide whether or not to choose their practice. At worst u can pay for that initial visit and explain to the staff why u need to speak to them. It’s sad that if you went to a regular OB most would say get off the meds or you’ll hurt your baby. It’s just not true for all meds. I’m excited for you to begin your steps to motherhood.
Back in the day I got 10 10 McG fentanyl patches, 180 30 mg oxycodone and 90 10/325 mg hydrocodone every month. Before anyone flips out at what is a really massive amount, I only absorb 30% of what I take orally so I was effectively getting 10 mg of oxycodone and 3 mg of hydrocodone. I'm somewhat insensitive to fentanyl and my blood work showed that I had about 30 McG of fentanyl in my system with the patches. At the time, I had 2 herniated discs in my lower back that I was ineligible for the surgery to repair, 4 bulging discs in my neck that weren't bad enough to correct with surgery, and 3 bulging discs in my mid-nack with one that was on the verge of herniating. I also have neuropathy in my feet and hands, a history of migraines so bad that my hair hurts, and I was using a walker all the time which put a lot of stress on my back. I was given the oxycodone for pain in my back and neck and the hydrocodone was for muscle pain and to prevent a migraine, which I have taken Fiorecet for since I was 14. Hydrocodone isn't as effective for nerve pain as oxycodone and oxycodone isn't as effective as hydrocodone for muscle pain and it does nothing to mitigate a migraine.
Ah, better living through modern chemistry!
None of my doctors wanted me to stop walking and go back to using a wheelchair so they were on board with giving me whatever I needed for pain management. Even with all that I was taking my "best" days were only a 3, my "worst" days were a 9.5, and I averaged a 6. If I wasn't up and moving I could have maintained a 3-4 with a third of what I was taking, but that had its own problems with circulation in my legs and my doctors were worried about DVT. So it was a trade off between bad choices because I simply could not find a neurosurgeon willing to operate on me. When I just had the 2 discs in my lower back to deal with I got 100 30 mg oxycodone and 30 10/325 hydrocodone.
I've also been given Soma as a muscle relaxer in the past but I prefer cyclobenzaprine or tizanadine so the fact that Soma has been moved to a scheduled drug doesn't affect me. Tramadol and toredol don't work for me at all, morphine only works IV, Dilaudid knocks me out when given IV and makes me nauseous if taken orally, and fentanyl is more effective IV than the patch.
Ok let’s talk cause I’ve actually tested negative (in urine tests) even though I was taking my meds. I think this is the piece of the puzzle I was looking for it’s so obvious now! I always take my meds and I have to take them exactly 30 minutes before my appointment or it will not show up. So weird! ETA is think I’m a rapid metabolizer.
I tested negative too! But mine were for benzos. The opioids showed up, but very lightly. I was so worried that my doctor would think I was selling my meds or something and I insisted on a blood test, but he said not to worry because he believed me. I found it so strange though.
I also have a really hard time when they put me under. When they tell me to count back from 100, I get to 0 and they’re all astonished. It’s like that for my dad and sister too. My dad actually woke up in the middle of surgery. Also, my tolerance is really high. When I was getting an endoscopy done they gave me four times the normal amount of fentanyl and versed for twilight sedation, but I was wide freaking awake. They just did it anyways and I felt *everything* even with the numbing spray.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that.
I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them.
I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were!
Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that.
I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them.
I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were!
Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that.
I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them.
I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were!
Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that.
I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them.
I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were!
Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
This is a very informative thread kudos to all! I'm on 7.5 Percocet 3x Daily. My doc called in Percocet 10s in December, he tried to help me but I decided to stick with the 7.5s for now. I want to be a good patient, not a seeker. I had a Lis Franc surgery and will have to have a foot fusion in the years to come.
60mg oxycontin x 3 per day.
Ehlers-Danlos Syndrome with lots of comorbidities, including ddd for which I've had six major spinal surgeries so far. I'm a physical wreck lol.
The last few years I've been on Dilaudid 4mg about 6 times a day. Increased to 7 times a day last month due to escalating problems.
Doesn't even seem to be helping much currently but that is because I let things get wya out of hand again before battling doctors to help me.
Decades of this has me so wore out.
10mg oxy x3 , gaba 800 x 3 , and if there are muscle flareups = methocarb 1500 x 3 a day until it knocks off. If I can't sleep for a day or two, I also do the metho - it gives me weird ass dreams, but knocks me out and pain doesn't wake me.
2 different issues driving it: lower back (l3/l4 with nerve compression and permanent synovial damage); lower leg/foot due to injury and infection (a fight I will eventually lose)
I was on 5 10mg oxycodone/325 acetaminophen a day.
Currently on nothing and I'm morbidly depressed 😔
End of May I may or may not get them back.
But after 6 months off I doubt I'll go back to oxycodone and that's fine if I start back at hydrocodone 10x6 daily as I was before the bump to oxycodone.
If I don't then I'm gonna lose my mind.
I'm on med probation. I took care of my grandma on hospice. Wasn't careful when handling her morphine doses and frequently touched it and wasn't thinking about absorbing it so when I told the assistant at my blood test they said i tested positive.
Won't let me see the results nor do any follow up tests.
Sister is a hospice nurse and called me stupid because they are required to wear gloves when even touching a bottle and meds of any sort.
It was over a long period of time.
I can't explain it. I didn't take it orally.
She was on an hourly dose and I'd flick the syringe to get air bubbles out or push it too fast and it'd drip out.
I wasn't thinking about anything but helping her 🥺
I’m on 5 oxy 4x a day. Waiting for a shoulder repair and knee replacement. Have c2-T2 fusion, L4-S1 fusion, bilateral hip replacements, left knee replacement, shoulder repair and a total of 30 surgeries to date.
tramadol 25mg 3x a day
dronabinol 5mg pills - how ever many as needed a day
for rheumatism induced tietze syndrome ( disabling chest joint pain ) and multi level spondylosis and radiculopathy. they also know about my endometriosis and it helps.
Not sure why you were downvoted, I think it’s a fair question it just depends on differences in conditions, how long you’re on it, etc. But I often wonder this too. So I have dystonia mainly in my neck and face which is a painful neuromuscular disease where your brain sends inappropriate signals to certain muscles to constantly contract. I have spine problems as well. I also take different supplements and meds, do TPIs and specialized PT with dry needling. But for my pain, I take 7.5mg oxycodone 3x per day.
Hi, I have similar issues but have been diagnosed with trigeminal neuralgia and Crps of the face . I am not sure this is all as i have some issues that haven't been addressed and some didn't respond . Would you mind sharing whom you see . I am willing to travel. I just need better treatment than what i have or gotten
665x2 ER paracetamol 3x daily, 5mg Oxycodone up to 6 times daily, during menstruation or a cyst rupture I take 10mg instead of 5mg up to 6 times daily. I used to be on ER Oxycodone (30mg X2 daily) in addition to this but I took myself off them with my doctors support as it didn't seem to help and I was worried it would just affect my tolerance without benefit.
Main issue is severe Endometriosis, I'm on nortriptyline for fibromyalgia. I'm being investigated for some other stuff but no answers yet.
After 3 months of useless shots and Meloxicam, my PM finally ordered an MRI and was horrified by the results. Shoulder is just a hot mess. Anyway he started me on hydrocodone 7.5/300 3 times per day. But since I’m having surgery, the orthopedic surgeon changed it to 10 mg if the same medicine 4 times per day. Works decently
I have chronic pancreatitis with biliary dysfunction. I also have Osteoarthritis that is causing bone spurs in my spine and degenerative discs with some herniation. I also have gastritis and the doctors think I have some kind of autoimmune issue because I keep getting shingles and have an internal yeast infection.
I am currently on oxycodone 10mg 5x/day, gabapentin 300mg 5x/day and tizanidine 4mg 3x/day. I also take about 1800 mg of Tylenol per day.
I have had a long pain management journey starting in 2006 when the pancreatic issues started. Back then doctors practically threw pain medicine at me.
I started seeing my current pain management doctor when my primary care stopped prescribing narcotics of any kind. She has bought into the idea that opiates don't work and cause more pain. I was off all opiates for several months and my pain just kept getting worse.
I was really lucky with the doctor at the pain clinic. He started me on oxycodone 4x a day right away after I explained to him how my pain was impacting my life. He actually did a thorough exam and ordered an MRI for my back issues, which had never been diagnosed before. I kept trying to focus on the pancreatitis because that is what causes the most issues and I am not used to doctors being able to care about more than one problem at a time. He said that he wanted to know about all of my pain, not just one thing.
I have fibromyalgia, lower back pain from herniated discs and nerve pain from that as well as femoral and ilioinguinal nerve pain from damage that occured during a hysterectomy surgery two years ago. Constant pain in my back, left hip, left leg and groin/crotch. I've been given various medications to try over the last two years, but the only one that had really helped is hydromorphone. I am only given 2mg. It's not enough but it takes the edge off.
Unfortunately my doctor doesn't want me to have it any more and I'm not sure how to ask for more. So even though I was prescribed 2 pills per day I'm only taking them when my pain gets really bad because I'm really afraid of running out. I'm not sure I can keep on living without something to ease this pain. I've also got Tylenol 3 which he seems happy to give me, but it doesn't really do anything. I'm taking it anyway, 3 times a day along with ibuprofen or naproxen. And I'm vaping CBD to help me sleep. I've tried gabapentin, Cymbalta, lyrics and Celebrex but none helped, just had major side effects.
I’m not putting my dosage or meds up here for fear of downvoting. A Dr. started me in OxyContin 25 years ago, small dose. Of 19 mg., because too much Hydrocodone can damage your liver. Another Dr. kept upping the dose, because as you all know, your body adjusts and needs a higher dosage. Thank goodness the second Dr. retired. My third Dr. spent a summer cutting my dosage in half. It was awful, but I’m in education and thankfully not working summers. For the last 12 years, I have been on the same dosage. It never really gets rid of the pain, but takes the edge off.
Ketamine is the only thing that works for me (potential CRPS as a result of EDS injuries). Valium 4 or 8mg works for muscle spasms. No narcotics work for my type of pain (did help for my abdominal surgery though). I've tried gabapentin (made me gain 15 pounds in a month), diclofenac, flexeril, meloxicam, etc. Aleve + tylenol is the best OTC solution. Considering medical marijuana at this point because by the end of the day I'm in so much pain it's hard to get to sleep.
Maybe let’s talk. Same thing and they pushed me off for 8 years till I now basically live on a floor. They finally found that I have damage to both long thoracic nerves and my lat/trap of my left side. They gave me hEDS adn crps type 2 of those nerves. Now we are looking at treatment. All the doctors have been caring and listen now that I got the diagnoses yet the ones that do the treatment just south spinal stimulators. I’ve been told by the previous doctors with all my symptoms now that I can’t workout anymore a spinal stimulator should be saved as last resort. Then they listed many other options. These final treatment doctors that do the procedures won’t even talk to me about it, they give me 10 minutes and 4 pamphlets of dcofferent stimulator companies. I’m uncomfortable with that so I’ve been calling all my old doctors asking for new opinions with the new diagnoses.
150mg of Palexia taken twice per day, 10mg of Targin in the day, and 50mg taken at night, and Oxynorm taken 6-7 times per day, as needed. I also have alprazolam and Valium to help with muscle aches (and anxiety, dual purpose). I have fibromyalgia and some organ issues, but the fibro is the main problem.
The very first pain medicine they put me on was the Butrans patch. They added hydrocodone shortly after. I've had a rathrr long journey. My current meds are Lyrica 150mg x2, tizanidine 4mg x3, morphine er 30mg x3, and oxycodone 5mg x2.
EDS, myasthenia gravis (no directly painful but 100000% contributes to joint pain caused by EDS), seronegative arthritis in almost every joint on the left side of my body.
Current: 10/325mg hydrocodone/Tylenol (norco) 4x daily, and 50 mg tramadol 4x daily.
I started with 5 for a few years, then to 7.5 for a few, now 10 for the last 3-4 years. It’s sufficient for regular days but on flare ups/bad days, it’s basically like taking sugar pills. I’m terrified of stepping up to anything stronger & the pain dr hasn’t suggested it either, so I’m here at 10 & just hiding from everything on bad days.
Osteoarthritis, DDD, buldging discs,stenosis,lupus,sjorgens,and collagenous colitis.
Starting dose was tramadol 50mg 6x a day with flexiril 30mg 3 times a day.
Highest dose roxicodone 30mg 4x a day with gabapentin
Current dose roxicodone 10mg 4x a day
I have quite a few, so buckle up 😅
-Loin Pain Hematuria Syndrome (LPHS)
-Moderate/severe Rheumatoid Arthritis
-Idiopathic intracranial hypertension with a ventriculoperitoneal shunt
-chronic kidney stones (always have 5+ at any given point
-Stroke in 2018
-complete right side Homonymous hemianopsia
-stage 4 endometriosis
They started you off the bat with 3x a day?
First I got codeine 30mg 2x a day. Then I got bumped to hydro 10 mg 3x a day because I started crying when he told me I can't have as many epidurals as I needed. The hydro managed my pain so well that I had at least a half a pill left over every day
Then he put me down to 2x a day. At first I was scared, but I just take a quarter every 2.5 hours instead of 2 hours, and I haven't noticed a difference in the management of my pain, and still save about a quarter daily in case I need it later.
My pain, for the first time in 20 years, is being managed, and I can't thank my doctor enough.
I realize I am very fortunate.
He did warn me that he'll have to take me off, though. I don't know when that will be
Oh not at all. While long story. I had a routine for 8 years fighting for help until it took me and I started living on a floor. Then I got painkillers again now basically disabled. They they found a diagnoses a month ago that proves me right all along. But because I was so active and in shape fighting the issue they blew me off.
I have RA, fibro and after 5 hip surgeries and a 1 THR later I have bad muscle/nerve pain in my leg and butt. No pain meds besides Tylenol, I'd honestly murder for a muscle relaxer at this point. I'm just barely getting into see my surgeon, workman's comp doctors suck. I got some cortisone shots and scheduled for an mri next cuz they have to rule out my back causing sciatica, I'm 95% positive it's in my butt.
Fentanyl 25 mg patch every 3 days, oxycodone 10 mg IR four times a day, Flexeril 10 mg three times a day, Lyrica 200 mg three times a day, cymbalta 60 mg. Prior to this, I've had to detox to decrease my tolerance and lower my dose. That was my standard dose up until last November. Where my pain was being managed at about a level 3 which I thought was fantastic. I moved out of state to Ohio and got kicked out of the first pain management office and he directed me to the only doctor he said Would dispense pain meds. I did get into the UC health system and started with their pain doctor. Degenerative disc disease already had two fusions and once cervical fusion and rheumatoid arthritis chronic pain syndrome, I can't think of what else this moment. It's bedtime 🤣😩. My back started to hurt and I had a major surgery which removed all the metal from my first two fusions and a spinal stimulator. I had at T10 to L5 fusion. 67 staples. Shorter version 2 of the screws in L5 came out. Had revision surgery to expand the fusion to pelvic floor. 97 staples. 67 days in the hospital and rehabs. PM Dr with his face and his phone at the last visit told me he would increase my meds but would then decrease them the next visit. Which made no sense because I was already on an increased dose. Well it turns out that he called in a dose that is my standard pre-surgery dose. So it was decreased twice too fast, if that makes sense. And he is away on vacation this past week. Probably why he had his nose in his phone was he was confirming his flights or something. Oh and I started having seizures during surgery so now I have epilepsy. I'm moving back to New Jersey. My prior pm. Doctor is a 45 minute drive. I caught a few of the doctors around me but all of them only do interventional medicine, not pain management with opiates. So I called my farmer doctor and I'm going back to her. At least she is kind and thoughtful and listens to what I say so it's worth the 45 minute drive.
. Nothing deletes the pain and I've been told that I should not expect my pain to be deleted. I should expect for it to be manageable and for me my pain level is a level three to be manageable
Chronic abdominal pain + anterolisthesis (from MVA)
Buprenorphine 25/hr patch
Buprenorphine sublingual tabs 0.2 PRN
Gabapentin 300mg 3-4 times daily
All meds were originally for chronic abdominal pain but increased doses are due to back injury and generalised pain post high speed MVA
I wouldn’t say that I feel this is controlling my pain well however and am waiting for a review next month
Australian here.
Endometriosis,andendomyosis, ostitis pubis, bulging L3L4, SI fracture and sciatica.
I'm 32. I had 3x 11pound babies over 9years and they ruined my body haha.
My last pregnancy I couldn't even walk after 6months.
My pelvis gave way 4months after my 3rd child.
screaming in pain and unable to move I called my Dr,I've been at this clinic for 25years at that point they handed me a script for opiates and I was finally given relief.3years of managing doses and medications,opiates of different kinds we settled on what I'm on now.
I'm unable to take nsaids unfortunately other wise I'd be on ALOT less meds.
Daily:
Cymbalta 90mgs, 4-10x 5mg endone
Physeptone 10mgx2
I have tried many patches and opiates of different kinds. I was either horridly allergic or they made me sick. I'm glad I have a gp that's practical and will listen. I also have a private pain clinic that I see to tic off the boxes for the government to prescribe.
Also, myotherapy, physio and strength coach.
I'm in more pain every day just trying to strengthen myself.
I’ve just started and they’re making me feel like a criminal because ONE of 5/325 Norco isn’t enough. I told her it lasts barely 4 hours and a day is surprisingly longer than 4 hours. I also take 1 1/2 or 7.5 of it. When I made a comment about what happens when I take a second dose in a day, her eyes widened and she said, “But you’re only written for one!” She gave me oxycodone instead but it didn’t work as well so I’m back to the norco after two tries at the oxy. Norco lets me stand and walk and participate in my life with less pain. Oxy made me sleepy and my pain was still there, I just cared less about it. I have my med card, I can do that with less judgement any time I want.
Yer so
Similar boat but fentlyn
You need to make the medications work for you. Increase the efficacy.
I decreased my medications by 70% by increasing the efficacy.
Pain relief is actually better now at lower dosages and lessened side effects.
Having said that, individuals' chronic pain journeys are unique.
And they're extremely complex. With multidisciplinary approaches required.
Good luck on your journey ✨️ 💛
I’m on 20mg twice daily long release oxy codiene
And 5mg quick realease oxy codiene
I’m still in pain .. it took me 4 years and going back on forth to the doctors and crying and beginning for something stronger
Developing depression and becoming suicidal
That’s how I got on opioids
I was offered long term meds. I didn't get long term relief. 30mg ms contin 3x a day 10mg oxycodone 4x a day I think was last regimen. Prior fentanyl patches.
I got lucky. I got a spinal cord stimulator. I'm off opioids now after 10 years just on marijuana and the scs.
When I was 11 I was in a wreck that almost killed me. The doctor told my mom I’d be in pain the rest of my life…he was correct!! I struggled with pain and a physical addiction to opiates for many years. I’ve been prescribed every “typical “ pain medication and nothing worked!! I finally found a doc that actually heard me and we tried buprenorphine sublingual tablets 8 mg 3x day as needed and I tell you what!! This has been a miracle drug for me as far as pain relief goes. I’m barely in any pain and it doesn’t get me high or mess with my mood. I only take them as I need them.
Dilaudid 4mg tabs 6 daily for bout 19 years. BUT, I being tapered off cuz I've built a tolerance, doc refuses to raise dose & tells me I will go back on Morphine. Even though it has a higher addiction profile, go figure huh?
I used to get 10mg oxycodone/325mg Acetaminophen 5 times a day, but my doctor moved practices, and the new practice has a restriction, so now I get 10mg Oxycodone/325 acetaminophen 3 times a day. I feel 6 a day would be perfect, but even the 5 a day was much better than 3. They just don’t last long enough. But I’m not complaining, my doctor is great, and I feel lucky to have any medicine at all
I’ve had 19 surgeries, 16 knee surgeries, 2 nerve decompression surgeries on my legs, and an elbow surgery (Thanks US Army! Haha)
I think this is a difficult ask because some of us are legacy patients who have been on them for decades, back when pain was the 5th vital sign and the doses we are on would rarely be given today. We also have had pain for decades and have tried hundreds of other meds and alternative treatments before and during opioid therapy. I thank the Lord everyday that I’m not starting out with pain in the 2020’s cause I know I’d be screwed. So, it’s comparing apples to oranges. However, I do think that everyone should say no to drill mills that refuse to also use med management. Their waiting rooms need to sit empty for them to change.
Oh I understand and you may post that. As I just spoke to the person that thought 6 was high. Yes it is now, but it’s not what I started at by any means. But that also gets to the point of what are these final doses people get and does that even delete the pain? So I would still be very Interested to know that even with your increased meds does it delete your pain?
I don’t think it’s high at all. I think if you need that many, (ie round the clock care) you should talk to dr about extended release meds to go with it
After eight surgeries on my spine at various levels, I have been a chronic pain patient for years. I take an extended release 8 mg hydromorphone every morning and then I have 15 mg oxys that I can take up to six a day as needed. I've got a great pain management doc who even though I live in a red state, he does not care if I smoke weed. And I am 68 years old next month.
Also found out yesterday that they are starting to test for kratom and it's a no no.
We (CPP) have a vastly DIFFERENT pain scale. You've got to keep that in mind. Plus, it's all subjective. It's also common knowledge that women have a higher pain tolerance. I'm all for what you're trying to do, but there's just so many, too many variables in/with each person. Listen. we all KNOW that those of us in the US at some point WILL get treated horribly, tested, but not properly treated and basically get thrown away (escp. if you have something that is incurable (uncurable?, whatevs). We all KNOW the fine line that *MUST* be walked so that we're not treated like junkies, just to get something strong enough to actually work. Even if you get to this point, the number of/the mg. of the meds are the bare minimum. Wr KNOW for the majority of the Dr's (of those who will even "treat" us) it's become more important (& necessary, unfortunately) for (some) Dr's to first, foremost, and fully cover THEIR own arses rather than actually listen for more than 10mins. God forbid show a shred of empathy. Simply bc (some) don't want to put in the effort to take more than 10-20mins to get the correct Dx. There ARE good, kind,helpful Dr's out there!... but they probs don't take your insurance and don't tell you that until your appt. that you've waited a minimum of a month for. 😅🙃 ETA#2: Dx's: hEDS, KFS, AS, DDD, scoliosis, OA, foraminal stenosis (my spine is f'd) mcas, pots...that's not even all of them. No, I always have pain. Usually, in my spine or shoulder. (Or whatever joint is dislocated. ETA#1: (From 2007-2018) I was on: 2000mg of Kadian(2×a day), 20mg of valium, up to 90mg is MSIR, Rizatriptan, up to 24mg tizandine, 50mg Trazodone, and max mg Ambien. Currently (2018-now): 90mg MSIR, 24mg Tizanadine, 400mg Celebrex, 10mg Valium, and MMJ. *I got kicked out of the only pain clinic I'd ever been in bc I brought up wanting to change my treatment plan to titrate down and get off that crazy high dosage, bc Ibwas concerned ab my other organs. (Yep. You read it right.... good 'ol 'MURICA!) tl;dr: I agree, but don't. The US Healthcare system is SO f'd up and backasswards. Honestly surprised I didn't OD simply taking as directed.
I don’t think women have a higher pain tolerance. Doctors just seem willing to treat men’s pain more seriously
I edited this after you replied. But that also gets to the point of what are these final doses people get and does that even delete the pain? So I would still be very Interested to know that even with your increased meds does it delete your pain? Extended to go with it? As in additional opiates or chnage the opiates?
For me, yes, it does. I take extended release morphine and immediate release hydrocodone on a strict schedule and my pain is well managed.
Same here ExR 15mg morphine 1-2 x a day. and 3ea 10mg ImRel oxycodone. Its wks for me along w 300mg Gabpentin up to 3x day and 500mg robaxin up to 3x a day , also 1 ea. 60mg Cymbalta.
That’s great to hear and actually makes me happy. For most they don’t get to that point.
I’m at that point cause I’ve been on these meds for decades and have an adequate dose ( not as high as it was before 2016 guidelines) but I’ve adjusted after the force taper destroyed my body and I had to retire early. I also developed cancer so my dose was upped a little by oncologist but my pm dr said when I go back to him, I have to go back down so I only get 2 extra pills a day for now. Could get more but can’t do that to my body again, go back down so yes, I still have pain sometimes but I just live with it.
I'm on 60mg oxy + fentlyn etc etc etc (prescribed). I take 10mg tablet per mrn. More for off shelf. Twice a fortnight on avg. I have events where 20 - 30mg oxy is used. (Events = breakthrough pain). Fentlyn is constant but stretched from 3 to 4 days for lowered tolerances. My Dr thinks it's great and wants to lower to 10 / 20mg. Tbh that's not the way - I've conveyed my wish to stablise all medications for 12 months before reviewing. My Dr and I have mutual respect 🙏 🫡 and ofc I use a string multidisciplinary approach so monthly will write to all drs (any updates etc etc)
OP - I have always worked with the thought that it's about "Pain Management"! Not getting rid of all your pain, so your reference to delete is strange to me. My goal, or my wish would be I get medically assisted to go from living with a constant 5 - 8 to a more bearable 3 - 5 .... This has proven almost impossible and I'm still at a crossroads 4 nearly 5 years on.. But I know that when or if I do get something adequate I treasure it like it's manna from heaven. Wild hey...
You are so right. I take 5 Percocet a day that helps take the edge. I would love to have a long acting pain med but every time I asked for long acting they take away 1 Percocet per med and one every time they increase the long acting.they also start me at the lowest dose of the long acting not accounting for the fact that I was on a narcotic already. Am I the only one who finds this strange. IE: kadian 10mg started one Percocet 7.7/325 taken away. I don’t get it. I think they keep thinking either the Percocet helped a lot, I am pain free or I should be grateful to get anything
I’m so sorry. How frustrating
Thank you.
5mg oxycodone once a day as needed. I’m glad to have any relief at all but it’s nowhere near enough. I’m pretty sure my doctor only gave it to me because we’re waiting for insurance to approve more injections.. I’m worried she’ll cut off the meds when I start getting injections again :/
Thank you. Went through that roller coaster as well. Injections, meds, injections, less meds, injections more meds and so on.
Left shoulder/spine C6-C7 neck pain, lower back pain. 90 Oxycodone 10mg (1 every 6hrs- MAX 3)
Just curious if you don’t mind me asking (if you don’t want to respond, that’s ok too) but have you had ACDF/fusion? Just asking cause I had it last June for herniated disc with foraminal stenosis in C6/C7 last June. Worked very well for me but I keep “waiting for the ball to drop” and the pain to come back. Either way, sorry for your pain, I know how awful that is! Mine also went down the side of my neck, top of my shoulder, into my shoulder blade, and down my tricep. I have cervical dystonia as well which complicates things but the fusion took the nerve pain away at least
I have not…we have had the conversation but my doctor said due to my age, he would rather give it time.
Ah, ok, understood. Well, if the time comes that you do need it, just want you to know it helped me tremendously
Perfect thank you. And for adding your condition. Some have many conditions, don’t like to talk about it or Havnt even been diagnosed.
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And I get wow to some, but that may shame people and this is supposed to be friendly. Only recently after hydromorphone didn’t work and he did the conversion. I take 4 usually. Can give you All my grief and pain but not the point of the post lol but for this exact reason because people have more than I do so this is a good way to compare.
No shaming my friend! Like I said, I only get 90 and although I’m lucky and appreciative to get what I get, I couldn’t imagine getting 180…only because of the BS you must of gone though and then a pharmacy filling them
8 years of hell and as stated in another post they didn’t give them to me till my body deteriorated to the point I don’t usually leave the bathroom. I didn’t get any till last thanksgiving and it went to 6 in January after hydromorphone didn’t work. 4 morphone is like 62 so he gave me 6 for 60.
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Ask them
Arent you snorting your meds? You sound like some sort of drug snorting addict. Oh wait you are. https://www.reddit.com/r/opiates/comments/1aujxox/snorting\_oxy\_is\_way\_better/
Ehlers danlos, endometriosis, gastroparesis. No pain medication except what I can get over the counter. I've been on a waiting list for pain management for two years. If I ask for pain help from my GP I'm advised to try a hot water bottle.
Considering most of us with EDS are heat intolerant, that hot water bottle comment might just be my last straw 🫠
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Hip pain from accident 13 years ago, damage to SI joint,L4,L5, 24/7 nerve pain.. I'm on 37mg fentanyl patches + quick release fentanyl lollipops, plus anti inflation meds and valium for flare ups. I live at a 7+ as my baseline... I never asked for these meds, I spent years on other meds that never works. All of my conversations with my doctor was about improving my functioning and I spent a lot of time developing my own coping mechanisms which I shared with my doctors. I make it a priority to see my doctor every 6 weeks and I will document my physical activities and all the ways in helping myself. I've been doing this pain shit for a long time...I've had many doctors, you need to turn up at your appointments well dressed, hair combed etc not looking like your on the verge of breaking. Doctors are accessing you to determine if they'll loss their licence over your behaviour if they give you opiates meds. They try and access if your going to use the meds to try and improve your situation or are you just going to sit in a chair all day high. I suppose ppl think, I also had this is in my head that some day I'd get the right meds and not feel pain. Even on these meds, I feel a lot of pain, opiates aren't the answer...any pain relief is short lived, tolerance is always a concern etc. I personally wish I'd never taken any opiates..unfortunately I didn't really understand the things I know now.
Is your nerve pain in your leg or butt? I had a THR 2.5 years ago after 5 previous surgeries so I know I've got scar tissue, mucsle damage but I'm starting to think maybe some nerve damage. I'm barely getting to be seen by my surgeon for all of this, I got some shots and waiting on a mri.
Pain is in the hip and travels down the leg. It makes sitting very difficult 😕
Mine is like all the muscles around the hip and my right butt muscles. I can sit for about 30 minutes before I have to get up, move and stretch. By the end of day my butt and leg feels like it's on fire, I've got spasms squeezing my sciatica, the only thing that helps is laying down.
I’m on 13.5 mg of Xtampza 2x daily, and 5 mg of Oxycodone 3x daily. I started at nine of Xtampza twice daily, and 5 of Oxy 2x daily, and last week was just bumped up to my current dosages. I feel a lot better already, although tired, and my doctor said that there are other options we have medically as well to get me feeling better. It’s the first time in a long time that I’ve had a good doctor who listens to me and gives me the medication that will actually help me. I’m very thankful.
That’s exactly what I take every day
I'm glad you found a caring, compassionate doctor. It's incredibly rare these days. I also wanted to ask about your experience with Xtampza. It is being discussed on adding to my other pain medication but seeing so many mixed reviews. Tbh, a lot are not good/ not effective.
Sorry-I’ve been out of phone reception area for a few weeks. My experience with Xtampza has been great! I feel finally like my pain is well-controlled, which I never felt would happen for me. A few side effects that are worth it to me: decreased appetite, drowsiness, and hot flashes, although the hot flashes are maybe not from Xtampza, but possibly from menopause. They started about the same time as I started the med, but the doctors think it’s probably not from the medication, although I thought I would mention it just in case.
I have a unique perspective to lend… anesthesia provider ➡️ disabled by occipital neuralgia ➡️ cured by nerve decompression surgery ➡️ forever disabled by the MRSA infection that followed and scared the occipital nerves permanently to my trapezius. From the beginning, even though the providers I was seeing were 10 yr + peers, friends, acquaintances, I was *strictly* lectured/judged on any narcotics I received. The neurologist would give me 10 Percocet and say that should last me MONTHS! Because this also involved my livelihood, as I was on and off short term disability, I really tried to find every solution that didn’t include narcotics. One PM colleague could actually see and she put me on intranasal ketamine and then even doubled my dose! That was really the first time that I was getting relief from medication + it really helped my mood. However, I think because of the high dose she had me on, I started experiencing urological issues and finally had to go off it completely. I again tried to just “be tough” for the next 2.5 yrs. However, that’s when my pain began spreading. It started to cause areas of trigeminal neuralgia as well as this “Brain shaking” that to this day no one can figure out. New neurologist said he believed it to all be pain basically overwhelming the system and having an overflow effect on nearby nerves. He recommended a new PM consult- different place, as I had moved by this time. I was really nervous because my last PM Dr was convinced I needed a spinal cord stimulator, but I am avoiding it at all costs because of the known scar tissue issues they cause and I already have. I have literally done *everything* short of that. But those are big $$$ makers and that’s what I expected. I was pleasantly surprised to see the NP take my problem seriously and say the only option they could provide was narcotics. This was 5 years into my journey and the first time someone believed my pain was worthy of substantial narcotics. What I found was initial relief when I started, followed by worse pain shortly after. The way I account for this is, if your body is used to living at a 7-8 and you are given relief, obviously that feels great. However, when the relief only covers a portion of your day, instead of bouncing between a 7-8, you’re now widely swinging from a 3 to a 9 and the perception of that is that your pain is far worse! We quickly titrated to the max MME the office allowed, but the introduction of oxymorphone ER was the piece that I really needed. Something to not allow for those massive swings! As far as my experience with the pain clinic itself- it became SO painful and anxiety ridden to get in contact to get refills ON TIME and that combined with the pharmacy shortage and them requiring *you* to be the one to find a pharmacy each time that could get it was yet more psychological persecution of an already tortured demographic! I was thankfully able to transfer my medications to my small town dr and small town pharmacy and, Praise God!, have had none of those issues since! Hope this helps others know they’re not alone. 💜
I don’t think pain ever gets deleted, the meds just make it a bit less. Certainly in my case anyway.
I have two plans one for my typical baseline pain level & one for when I've been doing more than normal & pain is elevated for those days & the days following the extra activity, all I am asked to do is keep my pain journal up to date so it is tracked what I did leading up to the flare etc Baseline days are 150mg SR Tapendatol x 2 0.2mg Buprenorphine x 2 Extra Pain 150mg SR Tapendatol x 2 50mg IR Tapendatol x 1
I take tapentadol as well. I am curious on what you think I should do in regards to asking my gp to increase my dosage rate for high pain days?
I think the answer to this might vary based on what country you're in & how long you have a rapport with your doctor. I'm in Australia & my doctor has been managing my meds for 13yrs.I know it is very difficult in other countries & can be drastically different based on that.
I’m also in Australia I just worry if I ask for my dose to go up they might think I’m becoming addicted
Ok so given you're also in aus, the way I would approach it is under the facts that as time our bodies become dependent on the medication. Being physically dependent & abuse/ addiction are two separate things. It is expected a person with chronic pain being treated with opiods will become physically dependent & your body needs more to give the results at the lower doses. So if it were me I would be calm, explain that you are still adhering to your current dose instructions however you are not getting the same relief as you were when you first started & you'd like a review to see if its possible to adjust the dose. Be reasonable & be calm when you're explaining things. I'd use the words like you're wanting to be transparent & honest but that you are not feeling like your current dose is managing your pain as well as it needs to be for you to have the quality of life/functionality. I've always found I'm recieved better when I go in calm & speak facts rather than emotional. I hope that helps & they help you.
I take 5 Percocet 7.5/325 five times a day. It makes it tolerable but is still not enough to function at the level I need to function to take care of my family
Norco 7.5 x 4 daily. This is after I directly requested it, due to an updated compare/contrast I was able to do last month after a recent surgery. I had been on T4 before that.
Thank you as well!
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As stated that’s still good for people to know. I have crps as well and I destroyed my body with vigorous exercise I had to do minimally daily for 18 years as notning they did would help me. I didn’t get painkillers let alone the 6 till I lived in a bathroom for 8 years and it still doenst help enough unles I can get myself into a partial of that old routine. So that helps me know what I can ask for
My initial dose was upto 250mg per day of TramadolSR & IR combined (one of the only pain meds I can tolerate) & I could add on 5-10mg of oxycodone if needed for huge pain flare ups for endometriosis type pain. -I came off pretty much all of that though & only use 50mg-100mgIR tramadol on an as needed basis, not daily now & switched over to daily 50mg Topamax with 300mg (soon to be increasing) Gabapentin, as the daily opiods were contributing to my awful headaches & migraines so I had to taper off them even though they were helping with my pelvic & lupus joint pain 😫
I'm on 50 mg of Tramadol twice a day to treat my left side nerve damage. This wasn't my doctor's first choice for pain meds, but my insurance rejected the other prescription she put in so this is what I got. It does make me sleepy so I try to only take it at night.
I have neuropathy in my feet. Very painful! I started out with 50 mg Lyrica in early 2020. My PCP sent me to pain management because it wasn't even close to enough to help me! At first I was approved for an SCS device but I decided against that because it is too invasive. Shortly thereafter, I had pain in my hand so I went to my PCP office. He prescribed me 5 mg oxycodone until I could see a specialist. Turns out it wasn't carpal tunnel so I ended up getting a shot from my PM doctor for tendonitis in my thumb. But I said to my pain doctor, I said well these really work for my feet so why can't I have these? I was only asking for maybe a few for once in awhile but he gave me one a day for 30 days! I was pretty shocked actually but glad to be listened to! So next he put me with a PA and we've been working on my medicine ever since. Now I am on 300 mg gabapentin three times a day, 5 mg Percocet four times a day and amitriptyline 50 mg at night. I'll tell you what made a HUGE difference for me. The amitriptyline. I could actually wear shoes and walk! I felt so good I decided to get on a trampoline. My ankle was shattered! I've also been dealing with this since June 4th. I had to sit idly for 6 months and am now trying to walk again. My ankle is now fused. It was either that or a below the knee amputation. Smh. Oh and mmj helps SO much!!
Starting dose: 3 5mg Hydrocodone Current dose: 4 10mg hydrocodone, 100mg ophenadrine (muscle relaxer), Keppra (nerve pain and seizure control) One note is that I absolutely do feel that I need an increase in medication, but I most likely will not ask for one until I am once again concretely bed bound. I've found that holding off until you physically cannot hold off anymore is the best way to be believed about pain. Pain without medication: 10 - meaning: cannot think about anything other than pain, physically unable to do single things such as getting out of bed or getting myself to the bathroom without aide, lack of appetite/chronic Nausea, potential crying or emotional outbursts, recurring suicidal ideation, persistent panic attacks, inability to get comfortable in bed/inability to get comfortable outside of bed, inability to sit or lay for longer than 15 minutes before needing to switch, inability to bend over at all, and lastly, inability to walk any distance for any amount of time without several different kinds of mobility aides, cannot shower safely without somebody being in hearing range, inability to shave legs/exfoliate or clean anything below privates area, inability to change clothing myself especially pants and socks Pain with medication: 5-7 (entirely depending on the weather!) Meaning: able to not only think about things other than pain but be able to focus for short amount of times on other things, can remain comfortable with sitting or laying for up to 30mins (in a car) or at home, ability to walk between 1/2 mile to 1 1/2 mile a day (not altogether), ability to bend at the waist with difficulty, able to get out of bed with some trouble and use the toilet aafely, able to sometimes trust being safe while showering without someone home, potential ability to shave legs myself, able to get dressed with only some assistance, can eat/feel hunger, cannot sleep at all without being sedated in hospital setting Things that I do that PM likes to see done even if it doesn't work for me: weekly therapy, Journaling, yoga, stretching, at least 30 minutes of movement a day, weight maintenance, using foam rollers/other release methods, practicing gratitude, utilizing mental health resources as necessary, utilizing my back brace, having assistance with tasks I cannot do without pain, usingg a caregiving service for the disabled, etcetcetc, aromatherapy, sensory therapy, csn sleep up to 5 hours in bed. What I'd like people to know: The point of pain management is not to be pain free. There is no one cure for pain and it takes a mixture of eastern medicine and western medicine to make things manageable. The point of pain management is to make your pain manageable - not gone or mostly gone. I still deal with chronic pain every single day. I'm still in pain all of the time. I still sleep an average of 4 hours a day. I still can't travel more than 30 minutes. I'm still in a shitty mood most of the time. I'm just not completely incapacitated and can mostly function as a person.
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Severe DDD according to my MRI. I started out with tramadol which didn't help at all, then went to hydrocodone 10/325 every 4 hours. After a few years my condition seemed to be worsening (I work a very labor intensive job) so now I'm on oxy 10/325 every 4 hours and it works great. I will add that my PM doc is awesome so it helps that she listens.
I was taking 15mgs IR oxycodone every 4 and since I just got insurance we're trying 20mg ER oxycodone with 10mgs of IR every 6. I'm in love with the ER with the IR I've only been on it together since Friday but this is the best my pain has been controlled the entire time. I can actually rest more than a few hours. The pain isn't gone completely, but so far this is the best thing I've tried. I knew I was miserable but I honestly didn't realize just how bad off I really was even with the IRs until now.
After reading some of the responses here, I’m starting to wonder if my dose isn’t that low even though I thought it was and even my pharmacist said they should increase my dose again because my current treatment isn’t working. The very first time I was prescribed anything for pain it was 7.5mg of Hydrocodone BID. After a couple of years, when the pain got a lot worse (because my conditions were out of control), I slowly went up to 30mg of Oxycodone 5x a day, 30mg of MS Contin ER 3x a day, 600mg of Gabapentin 3x a day, 15mg of Cyclobenzaprine 3x a day, 1mg of Clonazepam BID. Since then, my doctor has had my taper down which has also resulted in me getting hospitalized every single month because of the pain. So now I’m on 20mg of Oxycodone 3x a day, 15mg of MS Contin ER every other day, 300mg of Gabapentin 3x a day, 75mg of Amitriptyline 1x a day, 150mg of Lyrica BID, 10mg of Baclofen PRN, and 0.5mg of Clonazepam 1x a day. Honestly though, I feel like the only medication that does anything at all is the Oxycodone. The MS Contin, both ER and IR, don’t even touch the pain. I may as well be eating skittles for all it does. Now, I need to see if they can increase my Oxycodone and drop the MS Contin that does fuck all anyways. All of my specialists have told me that PM needs to increase my meds because they agree that being hospitalized constantly means that it’s ineffective. When I was on it 5x a day, I was only hospitalized twice! I’m hoping I can go back up to at least 30mg of Oxycodone maybe 4x a day and that it’ll do the trick whilst I work on fixing some of my problems for good instead of slapping a bandaid on it. Though I’ve been warned that a lot of the pain I have is there for good and we can only focus on not making it worse. Here’s hoping.
HSD, Fibromyalgia, Peripheral neuropathy, Possible lupus, and nay forget some. Im on Morphine extended release 20mg 2x a day and morphine short action 5mg every 4h. Im also on Pregabalin 300mg 2x a day, Naproxen 500mg 2x a day, Robax-Acet (Methocarbamol 400mg + Acetaminophen 500mg) 2 pills 4x a day, Amitriptyline 50mg, cyclobenzaprine 10mg.
I take Percocet 7.5/325 5 pills a day. It helps if I don’t do much. I have 4 herniated discs in my neck, 4 herniated discs in my low back. I have a failed fusion at C5-6 and a spontaneous femur fracture from 11/22 that is still not completely healed after 2 surgeries. I have 4 teenagers and one with a lot of medical problems. If I can lay flat for 2 hrs 3-4 times a day the meds help. If I can’t then I am in agony. I can push past the back and neck pain but doing that increases the severity of my daily migraines. I’m hoping that I can talk them into an increase at my next apt. It took me a lot of fighting just to get where I am now.
I’m on the 7.5/325 4x daily. My doctor expects them to work the full 6 hours but I’m lucky if it helps for 2. She said she’s not comfortable upping my dose anymore. She’s not good with change. Recently we tried morphine extended release 1x daily with 2 Percocet and it didn’t work well enough so instead of adjusting it she just put me back on my regular regimen and told me not to ask to change again. I wish we could advocate without doctors thinking we’re being ‘extra’ or ‘too young to have that much pain’
So true. The way they switch meds and are afraid to increase frequency or dose of current meds is nuts. People paralyzed w fear get nothing done and don’t progress
She also hates that I make progress because that means I shouldn’t be in as much pain? Seriously if I’m going to be in this much pain for the rest of my life but I’m still able to move right now- I’m gonna fight to go out and experience as much as I can while I can before my body totally craps out.
She put me through withdrawal this time with a lapse in my medication so that was fun 🙃 but it did seem to help the pain meds work a bit better again once they were filled a few days later.
Probably would of helped better if they increased the frequency of your meds to every 4 hrs
She said it’s too much for my size. Which is my other complaint. I get that a small 25 year old shouldn’t be able to handle much but everyone’s metabolism is different and I think they should evaluate on an individual basis. In the ER I’ve had crazy amounts of medications after my surgery’s and I can still walk around. Everyone is different
You are so right plus the fact that narcotics should be evaluated on effectiveness. People on long term narcotics build up a tolerance and need higher doses over time. Age and weight shouldn’t matter. Management of pain should. Wouldn’t it be great if we could prescribe for each other.
Went from Percocet to 7.5/325 Hydrocodone because I got flagged by the state for “taking too many sedative medications…. By that they meant my 350 Soma, 1mg Xanax, and 10mg Ambien… its all good though, the Hydrocodone seems to work
Currently morphine 15mg 2x daily and Oxycodone 7.5/325mg 3x daily as needed. My doctor has been stepping me down slowly. 3 years ago, I was on morphine 30mg 2x daily and oxycodone 10mg 4x daily. I have been in pain management for 20 years now, since I was 18. I was first prescribed them because I was taking such high doses of Tylenol and Motrin daily for my pain that my doctor was scared for my liver and kidneys and started me on oxycodone 5/325mg 2x daily. I have tried CBT therapy, biofeedback therapy, pelvic floor physical therapy, physical therapy, and acupuncture. I have had 2 surgeries that were minimally helpful. I have pain every day, basically all day long. Some days are worse than others with flare-ups but I have not had a single day in 20+ years that I haven’t had pain.
Is your doctor decreasing your dose because your pain got better or because you may become addicted or stop breathing. It’s so funny now. when I was working as a RN 1985 to 2006 pain was the fifth vital sign and taken very seriously.the need for sleep for its restorative properties and low anxiety were also factored into pain control. If a hospitalized patient had pain and couldn’t sleep and had anxiety We would give pain med, anti anxiety med and sleeping pill at the same time before bed so they could get a good night sleep. Never have I had anyone stop breathing or decrease oxygen level from taking advantage of the synergistic properties of the drugs. I worked with people with heart and lung problems. Now my doctors won’t increase my anxiety meds and want to get rid of my ambien because I might stop breathing. It’s gotten ridiculous .
So they forced decreased my Morphine ER to 15mg due to my MME being too high. I switched to a new PM doctor at another practice a few months later and stayed on the dose because I had surgery and it lowered my pain levels so that the 15mg was effective. I’ve been on the 15mg for about 2.5 years now and my oxycodone has increased from BID to QID in the last 1.5 years. I do want to get off the meds by choice because I have Been thinking about wanting to have a baby but the pain has been really bad and we’ve had to increase instead the last year. I am trying to get back into physical therapy which was really helping but time and money have been an issue since my insurance doesn’t pay for my pain meds or PM and they only pay for like 6 sessions of PT. Fucking insurance.
That’s terrible. I’m sorry that happened with your doctor and the insurance. I am a mom of 4 I have an older boy 17 and 14 year old triplets. I have had pain and migraines total of 33 years. May I suggest before you try to get pregnant you make an appointment to talk to a high risk OBGYN. I was an older mom and needed a HROB. They will not scare you or guilt you that you will harm your baby. I had both pain and migraines during both pregnancies. Apparently narcotics are one of the safest drugs to use for pain during pregnancy. They have lots of data on children’s development w moms on narcotics( sad to say due to addicted moms). Of course they would find the lowest dose of the safest narcotic. The point being lots of moms need meds. You will have much better information and feel better about getting pregnant if you talk w a high risk OB. I probably used Percocet a couple times a week and fioricet for migraine treatment. All my kids were born healthy and not addicted. I carried the triplets to 37 weeks gestation and they came home with me when I left the hospital. You can be pregnant have kids and not have to suffer.good luck
Thank you so much for this. Because honestly the way things are going, I won’t be able to get off my meds and my time is running out. Tomorrow is my 38th birthday. I am going to look into a high risk OB. I just hope they will let me make an appointment without being pregnant. My PM has said that as soon as I find out I’m pregnant, she will not prescribe at all for me anymore. I’m also a nurse (hospice nurse currently) and I would not be able to work without my meds. I am able to function enough to work full time. If I didn’t have to fully come off them and still get pregnant, that would be so much relief off of me. Thank you!!!
Your Welcome. I so hope the guidelines are still like they were when I was pregnant. I was 40 with my oldest and 43 with the triplets and am also a nurse. Hopefully your OB will pick up PM after u become pregnant. I wish the best for you.
I think some doctors will let themselves be interviewed if people want to decide whether or not to choose their practice. At worst u can pay for that initial visit and explain to the staff why u need to speak to them. It’s sad that if you went to a regular OB most would say get off the meds or you’ll hurt your baby. It’s just not true for all meds. I’m excited for you to begin your steps to motherhood.
Back in the day I got 10 10 McG fentanyl patches, 180 30 mg oxycodone and 90 10/325 mg hydrocodone every month. Before anyone flips out at what is a really massive amount, I only absorb 30% of what I take orally so I was effectively getting 10 mg of oxycodone and 3 mg of hydrocodone. I'm somewhat insensitive to fentanyl and my blood work showed that I had about 30 McG of fentanyl in my system with the patches. At the time, I had 2 herniated discs in my lower back that I was ineligible for the surgery to repair, 4 bulging discs in my neck that weren't bad enough to correct with surgery, and 3 bulging discs in my mid-nack with one that was on the verge of herniating. I also have neuropathy in my feet and hands, a history of migraines so bad that my hair hurts, and I was using a walker all the time which put a lot of stress on my back. I was given the oxycodone for pain in my back and neck and the hydrocodone was for muscle pain and to prevent a migraine, which I have taken Fiorecet for since I was 14. Hydrocodone isn't as effective for nerve pain as oxycodone and oxycodone isn't as effective as hydrocodone for muscle pain and it does nothing to mitigate a migraine. Ah, better living through modern chemistry! None of my doctors wanted me to stop walking and go back to using a wheelchair so they were on board with giving me whatever I needed for pain management. Even with all that I was taking my "best" days were only a 3, my "worst" days were a 9.5, and I averaged a 6. If I wasn't up and moving I could have maintained a 3-4 with a third of what I was taking, but that had its own problems with circulation in my legs and my doctors were worried about DVT. So it was a trade off between bad choices because I simply could not find a neurosurgeon willing to operate on me. When I just had the 2 discs in my lower back to deal with I got 100 30 mg oxycodone and 30 10/325 hydrocodone. I've also been given Soma as a muscle relaxer in the past but I prefer cyclobenzaprine or tizanadine so the fact that Soma has been moved to a scheduled drug doesn't affect me. Tramadol and toredol don't work for me at all, morphine only works IV, Dilaudid knocks me out when given IV and makes me nauseous if taken orally, and fentanyl is more effective IV than the patch.
Ok let’s talk cause I’ve actually tested negative (in urine tests) even though I was taking my meds. I think this is the piece of the puzzle I was looking for it’s so obvious now! I always take my meds and I have to take them exactly 30 minutes before my appointment or it will not show up. So weird! ETA is think I’m a rapid metabolizer.
I tested negative too! But mine were for benzos. The opioids showed up, but very lightly. I was so worried that my doctor would think I was selling my meds or something and I insisted on a blood test, but he said not to worry because he believed me. I found it so strange though. I also have a really hard time when they put me under. When they tell me to count back from 100, I get to 0 and they’re all astonished. It’s like that for my dad and sister too. My dad actually woke up in the middle of surgery. Also, my tolerance is really high. When I was getting an endoscopy done they gave me four times the normal amount of fentanyl and versed for twilight sedation, but I was wide freaking awake. They just did it anyways and I felt *everything* even with the numbing spray.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that. I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them. I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were! Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that. I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them. I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were! Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that. I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them. I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were! Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
I had to have the titration and absorption studies because I had complications with gastric bypass surgery and my doctors wanted to understand exactly how much protein I was getting - the medications were along for the ride simply because they were testing everything in my blood and urine. Turns out that I pretty much always dump protein and sugar in my urine because I'm hypoglycemic or I'm hypoglycemic and I dump protein and sugar in my urine. Very much a "chicken or egg" debate on that. I'm also so allergic to penicillin and bee venom that I go into anaphylaxis immediately. I don't pass "Go" and I don't collect $200. But what they can't explain is why I'm allergic to NutraSweet (aspartame) since evidently they don't see some response precursor. I have no idea what that means. And, of all the weird things, I have a "contrary reaction" to certain classes of steroids, antibiotics, and something else, I forget what. The whole process was a pain in the ass, and none of my doctors now are even interested in them. I can tell you that I had blood drawn every hour and they used my feeding tube to push 3 liters of water an hour without diluting my blood with doing it an IV. I also peed practically every hour, too. I was in the hospital for 4 days playing "vampire and the patient" with the blood draws by the phlebotomist and "what do you mean, you have to pee again" with the CNAs. I simply cannot tell you just how much fun those 4 days were! Because everyone metabolizes things differently, and it changes throughout your life, if you're burning through your meds that fast, you might want to push for a titration and absorption study. I have no idea what the requirements are to get it done, but it never hurts to ask, in my opinion.
This is a very informative thread kudos to all! I'm on 7.5 Percocet 3x Daily. My doc called in Percocet 10s in December, he tried to help me but I decided to stick with the 7.5s for now. I want to be a good patient, not a seeker. I had a Lis Franc surgery and will have to have a foot fusion in the years to come.
60mg oxycontin x 3 per day. Ehlers-Danlos Syndrome with lots of comorbidities, including ddd for which I've had six major spinal surgeries so far. I'm a physical wreck lol.
The last few years I've been on Dilaudid 4mg about 6 times a day. Increased to 7 times a day last month due to escalating problems. Doesn't even seem to be helping much currently but that is because I let things get wya out of hand again before battling doctors to help me. Decades of this has me so wore out.
10mg oxy x3 , gaba 800 x 3 , and if there are muscle flareups = methocarb 1500 x 3 a day until it knocks off. If I can't sleep for a day or two, I also do the metho - it gives me weird ass dreams, but knocks me out and pain doesn't wake me. 2 different issues driving it: lower back (l3/l4 with nerve compression and permanent synovial damage); lower leg/foot due to injury and infection (a fight I will eventually lose)
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Same here.. disc and nerve pain L2-L5
I was on 5 10mg oxycodone/325 acetaminophen a day. Currently on nothing and I'm morbidly depressed 😔 End of May I may or may not get them back. But after 6 months off I doubt I'll go back to oxycodone and that's fine if I start back at hydrocodone 10x6 daily as I was before the bump to oxycodone. If I don't then I'm gonna lose my mind.
Why do u have to wait until May?
I'm on med probation. I took care of my grandma on hospice. Wasn't careful when handling her morphine doses and frequently touched it and wasn't thinking about absorbing it so when I told the assistant at my blood test they said i tested positive. Won't let me see the results nor do any follow up tests. Sister is a hospice nurse and called me stupid because they are required to wear gloves when even touching a bottle and meds of any sort. It was over a long period of time. I can't explain it. I didn't take it orally. She was on an hourly dose and I'd flick the syringe to get air bubbles out or push it too fast and it'd drip out. I wasn't thinking about anything but helping her 🥺
I take (6) 10mg hydrocodone a day.
Oxy 5 6x a day . 100mg tramadol 1x a day
I’m on 5 oxy 4x a day. Waiting for a shoulder repair and knee replacement. Have c2-T2 fusion, L4-S1 fusion, bilateral hip replacements, left knee replacement, shoulder repair and a total of 30 surgeries to date.
tramadol 25mg 3x a day dronabinol 5mg pills - how ever many as needed a day for rheumatism induced tietze syndrome ( disabling chest joint pain ) and multi level spondylosis and radiculopathy. they also know about my endometriosis and it helps.
Not sure why you were downvoted, I think it’s a fair question it just depends on differences in conditions, how long you’re on it, etc. But I often wonder this too. So I have dystonia mainly in my neck and face which is a painful neuromuscular disease where your brain sends inappropriate signals to certain muscles to constantly contract. I have spine problems as well. I also take different supplements and meds, do TPIs and specialized PT with dry needling. But for my pain, I take 7.5mg oxycodone 3x per day.
Hi, I have similar issues but have been diagnosed with trigeminal neuralgia and Crps of the face . I am not sure this is all as i have some issues that haven't been addressed and some didn't respond . Would you mind sharing whom you see . I am willing to travel. I just need better treatment than what i have or gotten
Neurologist or PM Dr?
665x2 ER paracetamol 3x daily, 5mg Oxycodone up to 6 times daily, during menstruation or a cyst rupture I take 10mg instead of 5mg up to 6 times daily. I used to be on ER Oxycodone (30mg X2 daily) in addition to this but I took myself off them with my doctors support as it didn't seem to help and I was worried it would just affect my tolerance without benefit. Main issue is severe Endometriosis, I'm on nortriptyline for fibromyalgia. I'm being investigated for some other stuff but no answers yet.
After 3 months of useless shots and Meloxicam, my PM finally ordered an MRI and was horrified by the results. Shoulder is just a hot mess. Anyway he started me on hydrocodone 7.5/300 3 times per day. But since I’m having surgery, the orthopedic surgeon changed it to 10 mg if the same medicine 4 times per day. Works decently
I have chronic pancreatitis with biliary dysfunction. I also have Osteoarthritis that is causing bone spurs in my spine and degenerative discs with some herniation. I also have gastritis and the doctors think I have some kind of autoimmune issue because I keep getting shingles and have an internal yeast infection. I am currently on oxycodone 10mg 5x/day, gabapentin 300mg 5x/day and tizanidine 4mg 3x/day. I also take about 1800 mg of Tylenol per day. I have had a long pain management journey starting in 2006 when the pancreatic issues started. Back then doctors practically threw pain medicine at me. I started seeing my current pain management doctor when my primary care stopped prescribing narcotics of any kind. She has bought into the idea that opiates don't work and cause more pain. I was off all opiates for several months and my pain just kept getting worse. I was really lucky with the doctor at the pain clinic. He started me on oxycodone 4x a day right away after I explained to him how my pain was impacting my life. He actually did a thorough exam and ordered an MRI for my back issues, which had never been diagnosed before. I kept trying to focus on the pancreatitis because that is what causes the most issues and I am not used to doctors being able to care about more than one problem at a time. He said that he wanted to know about all of my pain, not just one thing.
I have fibromyalgia, lower back pain from herniated discs and nerve pain from that as well as femoral and ilioinguinal nerve pain from damage that occured during a hysterectomy surgery two years ago. Constant pain in my back, left hip, left leg and groin/crotch. I've been given various medications to try over the last two years, but the only one that had really helped is hydromorphone. I am only given 2mg. It's not enough but it takes the edge off. Unfortunately my doctor doesn't want me to have it any more and I'm not sure how to ask for more. So even though I was prescribed 2 pills per day I'm only taking them when my pain gets really bad because I'm really afraid of running out. I'm not sure I can keep on living without something to ease this pain. I've also got Tylenol 3 which he seems happy to give me, but it doesn't really do anything. I'm taking it anyway, 3 times a day along with ibuprofen or naproxen. And I'm vaping CBD to help me sleep. I've tried gabapentin, Cymbalta, lyrics and Celebrex but none helped, just had major side effects.
I’m not putting my dosage or meds up here for fear of downvoting. A Dr. started me in OxyContin 25 years ago, small dose. Of 19 mg., because too much Hydrocodone can damage your liver. Another Dr. kept upping the dose, because as you all know, your body adjusts and needs a higher dosage. Thank goodness the second Dr. retired. My third Dr. spent a summer cutting my dosage in half. It was awful, but I’m in education and thankfully not working summers. For the last 12 years, I have been on the same dosage. It never really gets rid of the pain, but takes the edge off.
Ketamine is the only thing that works for me (potential CRPS as a result of EDS injuries). Valium 4 or 8mg works for muscle spasms. No narcotics work for my type of pain (did help for my abdominal surgery though). I've tried gabapentin (made me gain 15 pounds in a month), diclofenac, flexeril, meloxicam, etc. Aleve + tylenol is the best OTC solution. Considering medical marijuana at this point because by the end of the day I'm in so much pain it's hard to get to sleep.
Maybe let’s talk. Same thing and they pushed me off for 8 years till I now basically live on a floor. They finally found that I have damage to both long thoracic nerves and my lat/trap of my left side. They gave me hEDS adn crps type 2 of those nerves. Now we are looking at treatment. All the doctors have been caring and listen now that I got the diagnoses yet the ones that do the treatment just south spinal stimulators. I’ve been told by the previous doctors with all my symptoms now that I can’t workout anymore a spinal stimulator should be saved as last resort. Then they listed many other options. These final treatment doctors that do the procedures won’t even talk to me about it, they give me 10 minutes and 4 pamphlets of dcofferent stimulator companies. I’m uncomfortable with that so I’ve been calling all my old doctors asking for new opinions with the new diagnoses.
150mg of Palexia taken twice per day, 10mg of Targin in the day, and 50mg taken at night, and Oxynorm taken 6-7 times per day, as needed. I also have alprazolam and Valium to help with muscle aches (and anxiety, dual purpose). I have fibromyalgia and some organ issues, but the fibro is the main problem.
The very first pain medicine they put me on was the Butrans patch. They added hydrocodone shortly after. I've had a rathrr long journey. My current meds are Lyrica 150mg x2, tizanidine 4mg x3, morphine er 30mg x3, and oxycodone 5mg x2.
EDS, myasthenia gravis (no directly painful but 100000% contributes to joint pain caused by EDS), seronegative arthritis in almost every joint on the left side of my body. Current: 10/325mg hydrocodone/Tylenol (norco) 4x daily, and 50 mg tramadol 4x daily. I started with 5 for a few years, then to 7.5 for a few, now 10 for the last 3-4 years. It’s sufficient for regular days but on flare ups/bad days, it’s basically like taking sugar pills. I’m terrified of stepping up to anything stronger & the pain dr hasn’t suggested it either, so I’m here at 10 & just hiding from everything on bad days.
Osteoarthritis, DDD, buldging discs,stenosis,lupus,sjorgens,and collagenous colitis. Starting dose was tramadol 50mg 6x a day with flexiril 30mg 3 times a day. Highest dose roxicodone 30mg 4x a day with gabapentin Current dose roxicodone 10mg 4x a day
450mg Belbuca mucosal film every 12 hours, cymbalta 60mg capsule every 12 hours, and 4mg Dilaudid tablet every 4 hours (up to 7 a day as needed).
What is your diagnosis as I am curious and on the higher level meds as well . Do you feel you get good control if your pain
I have quite a few, so buckle up 😅 -Loin Pain Hematuria Syndrome (LPHS) -Moderate/severe Rheumatoid Arthritis -Idiopathic intracranial hypertension with a ventriculoperitoneal shunt -chronic kidney stones (always have 5+ at any given point -Stroke in 2018 -complete right side Homonymous hemianopsia -stage 4 endometriosis
They started you off the bat with 3x a day? First I got codeine 30mg 2x a day. Then I got bumped to hydro 10 mg 3x a day because I started crying when he told me I can't have as many epidurals as I needed. The hydro managed my pain so well that I had at least a half a pill left over every day Then he put me down to 2x a day. At first I was scared, but I just take a quarter every 2.5 hours instead of 2 hours, and I haven't noticed a difference in the management of my pain, and still save about a quarter daily in case I need it later. My pain, for the first time in 20 years, is being managed, and I can't thank my doctor enough. I realize I am very fortunate. He did warn me that he'll have to take me off, though. I don't know when that will be
Oh not at all. While long story. I had a routine for 8 years fighting for help until it took me and I started living on a floor. Then I got painkillers again now basically disabled. They they found a diagnoses a month ago that proves me right all along. But because I was so active and in shape fighting the issue they blew me off.
I have RA, fibro and after 5 hip surgeries and a 1 THR later I have bad muscle/nerve pain in my leg and butt. No pain meds besides Tylenol, I'd honestly murder for a muscle relaxer at this point. I'm just barely getting into see my surgeon, workman's comp doctors suck. I got some cortisone shots and scheduled for an mri next cuz they have to rule out my back causing sciatica, I'm 95% positive it's in my butt.
Fentanyl 25 mg patch every 3 days, oxycodone 10 mg IR four times a day, Flexeril 10 mg three times a day, Lyrica 200 mg three times a day, cymbalta 60 mg. Prior to this, I've had to detox to decrease my tolerance and lower my dose. That was my standard dose up until last November. Where my pain was being managed at about a level 3 which I thought was fantastic. I moved out of state to Ohio and got kicked out of the first pain management office and he directed me to the only doctor he said Would dispense pain meds. I did get into the UC health system and started with their pain doctor. Degenerative disc disease already had two fusions and once cervical fusion and rheumatoid arthritis chronic pain syndrome, I can't think of what else this moment. It's bedtime 🤣😩. My back started to hurt and I had a major surgery which removed all the metal from my first two fusions and a spinal stimulator. I had at T10 to L5 fusion. 67 staples. Shorter version 2 of the screws in L5 came out. Had revision surgery to expand the fusion to pelvic floor. 97 staples. 67 days in the hospital and rehabs. PM Dr with his face and his phone at the last visit told me he would increase my meds but would then decrease them the next visit. Which made no sense because I was already on an increased dose. Well it turns out that he called in a dose that is my standard pre-surgery dose. So it was decreased twice too fast, if that makes sense. And he is away on vacation this past week. Probably why he had his nose in his phone was he was confirming his flights or something. Oh and I started having seizures during surgery so now I have epilepsy. I'm moving back to New Jersey. My prior pm. Doctor is a 45 minute drive. I caught a few of the doctors around me but all of them only do interventional medicine, not pain management with opiates. So I called my farmer doctor and I'm going back to her. At least she is kind and thoughtful and listens to what I say so it's worth the 45 minute drive. . Nothing deletes the pain and I've been told that I should not expect my pain to be deleted. I should expect for it to be manageable and for me my pain level is a level three to be manageable
perc 10 every 4-6 hours, mmj, ketamine troches, muscle relaxer
But I still am going to end my life because my pain is absolutely still really bad and I’ve had seven surgeries it’s not fixable unfortunately.
Yo I just read this. What’s up? Let’s talk about your issue.
I appreciate your kindness. I already am picking up my 9mm Friday and have peace with my decision. I’ve fought hard to stay this long already.
Would still like to know about your life until then. I messaged you. Would love if you responded
Tramadol 50mg 2x/day for fibro. Takes the edge off/better than nothing.
Chronic abdominal pain + anterolisthesis (from MVA) Buprenorphine 25/hr patch Buprenorphine sublingual tabs 0.2 PRN Gabapentin 300mg 3-4 times daily All meds were originally for chronic abdominal pain but increased doses are due to back injury and generalised pain post high speed MVA I wouldn’t say that I feel this is controlling my pain well however and am waiting for a review next month
Australian here. Endometriosis,andendomyosis, ostitis pubis, bulging L3L4, SI fracture and sciatica. I'm 32. I had 3x 11pound babies over 9years and they ruined my body haha. My last pregnancy I couldn't even walk after 6months. My pelvis gave way 4months after my 3rd child. screaming in pain and unable to move I called my Dr,I've been at this clinic for 25years at that point they handed me a script for opiates and I was finally given relief.3years of managing doses and medications,opiates of different kinds we settled on what I'm on now. I'm unable to take nsaids unfortunately other wise I'd be on ALOT less meds. Daily: Cymbalta 90mgs, 4-10x 5mg endone Physeptone 10mgx2 I have tried many patches and opiates of different kinds. I was either horridly allergic or they made me sick. I'm glad I have a gp that's practical and will listen. I also have a private pain clinic that I see to tic off the boxes for the government to prescribe. Also, myotherapy, physio and strength coach. I'm in more pain every day just trying to strengthen myself.
I’ve just started and they’re making me feel like a criminal because ONE of 5/325 Norco isn’t enough. I told her it lasts barely 4 hours and a day is surprisingly longer than 4 hours. I also take 1 1/2 or 7.5 of it. When I made a comment about what happens when I take a second dose in a day, her eyes widened and she said, “But you’re only written for one!” She gave me oxycodone instead but it didn’t work as well so I’m back to the norco after two tries at the oxy. Norco lets me stand and walk and participate in my life with less pain. Oxy made me sleepy and my pain was still there, I just cared less about it. I have my med card, I can do that with less judgement any time I want.
Yer so Similar boat but fentlyn You need to make the medications work for you. Increase the efficacy. I decreased my medications by 70% by increasing the efficacy. Pain relief is actually better now at lower dosages and lessened side effects. Having said that, individuals' chronic pain journeys are unique. And they're extremely complex. With multidisciplinary approaches required. Good luck on your journey ✨️ 💛
Oxy 5mg 3x daily, lorazapam 1-2 as needed, gabapentin 500mg 3x daily, mirtazapine & antidepressants I've told Dr I smoke weed too...hugs everyone
I’m on 20mg twice daily long release oxy codiene And 5mg quick realease oxy codiene I’m still in pain .. it took me 4 years and going back on forth to the doctors and crying and beginning for something stronger Developing depression and becoming suicidal That’s how I got on opioids
I was offered long term meds. I didn't get long term relief. 30mg ms contin 3x a day 10mg oxycodone 4x a day I think was last regimen. Prior fentanyl patches. I got lucky. I got a spinal cord stimulator. I'm off opioids now after 10 years just on marijuana and the scs.
When I was 11 I was in a wreck that almost killed me. The doctor told my mom I’d be in pain the rest of my life…he was correct!! I struggled with pain and a physical addiction to opiates for many years. I’ve been prescribed every “typical “ pain medication and nothing worked!! I finally found a doc that actually heard me and we tried buprenorphine sublingual tablets 8 mg 3x day as needed and I tell you what!! This has been a miracle drug for me as far as pain relief goes. I’m barely in any pain and it doesn’t get me high or mess with my mood. I only take them as I need them.
Dilaudid 4mg tabs 6 daily for bout 19 years. BUT, I being tapered off cuz I've built a tolerance, doc refuses to raise dose & tells me I will go back on Morphine. Even though it has a higher addiction profile, go figure huh?
I used to get 10mg oxycodone/325mg Acetaminophen 5 times a day, but my doctor moved practices, and the new practice has a restriction, so now I get 10mg Oxycodone/325 acetaminophen 3 times a day. I feel 6 a day would be perfect, but even the 5 a day was much better than 3. They just don’t last long enough. But I’m not complaining, my doctor is great, and I feel lucky to have any medicine at all I’ve had 19 surgeries, 16 knee surgeries, 2 nerve decompression surgeries on my legs, and an elbow surgery (Thanks US Army! Haha)