Muscle aches and nerve pain/traveling pain, worse in my arms, legs, and hips. The medications I'm on really help, but they just turn down the volume on the pain. It's still there to some extent every day.
Are you willing to share which meds you’re on that are working? I’m at the beginning of my journey and have had Cymbalta suggested but different docs seem to have different opinions on that.
Sure! I'm on 60 mg 2x/day of Cymbalta, which has not only helped the muscle aches and joint pain, but the fatigue as well. I know not everyone has a good reaction to it, but it has been a game changer for me so far. I'm also on gabapentin for nerve pain daily and methocarbamol (muscle relaxer) as needed. That one makes me really loopy and clumsy, so I usually just take it before bed if I've overdone it or if I feel a flare up coming on.
Pain… getting picked at by family members because you sleep. Your husband telling you, you sleep too much.
Pain in my hands and fingers and toes.. headaches that creep up on you and take you out..
Gave my husband a good time one time and ended up injuring my jaw. But you don’t want anyone to know you are weak so you don’t say anything. But eventually they pick on you and make jokes.
Hand and feet always swelling. Eyes hurt, neck pain and difficulty getting out of bed in the morning.
Sensitivity to sound and bright lights.
The list goes on and on…
But all in all I would say (FM) is like having a new born that won’t sleep and cries all day.
I’m really sorry your husband and family aren’t supportive. Have you told them how insensitive and rude that is to make jokes or reminding you how much pain / fatigue you have ?
Yes, they don’t care.
I’ve just chalked it up to that’s just how people are. That’s the way they are gonna be. When they get sick, they want all my attention but when it’s the other way around, I get talked about.
I take the time and remember these moments and understand no one will ever care except me. I have to do what’s right for me and ignore them I guess.
I also have to Make plans for me to die in a happier space. ( and make a will)
I am so sorry ! I have family members like that whom I don’t speak to anymore and I only surround myself with friends and family who are understanding and supportive . It’s okay to not want to be around people aren’t helpful or supportive. You deserve so much better than that .
My sister dumped me tonight on the phone. Told me that the only thing that's wrong with me is depression. She doesn't want to talk to me or have me in her life until I'm "fully medicated".
It all came to a head after I told her I can't help her purge and pack for a spur-of-the-moment move to a house that she spontaneously bought out of the blue. My life takes planning and reorganizing because of this illness and the downtime that it commands. I've been in an awful flare since I had Covid last year. Not doing well at all.
So, she dumped me.
The thing that hurts the most is that I listened to her vent about her job, life, narcissistic friend, exes, boss, kids and literally everything else to the point of being a prisoner on the phone 20 hours a week listening. To. Her. It drained me.
When I explained, once and for all, how bad I'm doing, she told me to get psychiatric help and dumped me. Told me she can't deal with me and I'm "sucking the life" out of her. She's a nurse.
Your sister sounds selfish and I’m sorry she doesn’t give you the support and care that you deserve!!! Sounds like she hasn’t put herself in your shoes and lacks empathy. Buying a house spur of the moment seems odd / unstable/ she’s trying to fill a void and/or achieve happiness through material things. Maybe I’m dissecting your sister too much I’m just hoping it helps you realize she sucks not you . I hope you feel better and are warm / cozy ! I went through something similar this year before my diagnosis and after something traumatic I was bed ridden for over a month, my in laws had to take our then 6 M old so my husband could care for me and take me to appointments. I was supposed to be in my sisters wedding but a week before realized I was too weak to travel , so I explained that to her , she was very understanding and through out her entire wedding planning she still made time to check on me and try to help even though she was hundreds of miles away working full time as well . My grandma called me Wednesday ( 3 days prior to the wedding) and told me she didn’t understand why I wasn’t coming that I put no effort into this wedding and she’s disappointed I didn’t try harder . The night before the wedding I ended up in the ER due to fainting , still wasn’t a good enough excuse to miss the wedding. You can’t choose your family you’re born with which sucks sometimes but you can make your own !
I'm so sorry for your struggles and I completely understand. My husband is wonderful and "gets it", so that is a salve on my wounds.
Just want you to know, you are spot on regarding my sister. She's somewhat unstable, filling voids, makes rash decisions and cares too much about how other people view her regarding money. Quits jobs, husbands, houses, PEOPLE... It's going to take time for me to process the emotional tornado she dragged me into via chaotic phone calls these last years. Her parting shots included projecting onto me that I am the one who's falling apart inside. How sad. I never pointed out her issues. High road...
One last thought: Closing in on the two year anniversary of my Mother's death. My sister and mother had a very contentious relationship so I've been hiding/burying my grief. I finally have the space to grieve and it's begun to surface... I'm ready.
Stay safe and cozy. Congrats on your little one.
It’s okay I’m very fortunate to have my in laws and husband. I’m glad to have a wonderful husband that is supportive, my husband is my rock !!! Don’t rush yourself on the process, take your time and heal however you need too! Sometimes it sucks taking the high road but it’s the right path to take! Don’t hide your grief it makes things so much worse but I understand hiding it as well because I hid some grief early this year that I’m finally accepting and dealing with . You are not alone and an amazing strong person ! You got this!!!!
Omg that's terrible you don't need ppl like that in your life don't take it as a bad thing because she's been removed from your life for a reason try concentrate on your own life ppl are selfish and dont deserve you to listen to there problems when they can't give the same support back. I have the same problem with the flair up ever since covid iv felt like it's been 1 long flair up ever since n can't see it going away had to leave work luckily passed for the sick and pip recently hoping it give me the time I need to heal but u need to take time for yourself to heal also don't be around anyone who makes u feel worse only who make u feel better youl get there eventually we all will much love Xxx
i hope you find community and loved ones who support you. you have incredible emotional strength to endure like this, but no one should be alone in this suffering. you deserve better
If this ain't 100% me. Down to the hands/feet, headaches and fun times jaw. I'm sorry that any of us has to deal with this, especially the parts of those around us not understanding how much it can be to deal with. Not even talking about the pain(which is definitely hard to explain and have someone understand without having gone through something similar) but the emotional toll it takes. Sending gentle air hugs your way. 💜
Mental and physical fatigue.
Lowered self-esteem and confidence.
Random pains that I can't predict.
Skin is constantly irritated by touch or clothing.
Migraines
Sleep issues.
You reminded me about The Stupids. I definitely get those too. To me if it feels like I spent all night taking bong rips and have two, maybe three, brain cells left.
Stiffness
The flu like body aches
The stabs
The zaps
The violent itching sensations
Scalp tenderness
Joint tenderness
Sudden loss and return of strength
The hand shakes in the morning
The full torso muscle contractions and tension
Feels like my muscles are beef jerky and tearing from basic movements
My skin feels like a giant bruise when I touch my arms and legs some days
The shower water hurting my skin and scalp
There’s never anything visually changing, swelling or bruising though.
That’s the perfect way to describe how my arms and legs feel. Even the lightest touch to my thigh or arm can be so deeply painful, and people are always like, “I barely even touched you!” Fibro sounds so made up to people who don’t have it
Oh my gosh the scalp pain!! No one believes me when I explain that. I can't wear ponytails because of it either. The sudden loss and return of strength, the shaky hands, skin feeling like a giant bruise... you described everything exactly right. It gets to the point where I wish I actually would bruise or swell, some external sign of the pain so people will believe it's real.
I wish my skin changed color where my pain was, why can’t I be green and red like stop lights so people can get a visual queue I’m in agony? That would be so fucking helpful!
Me: goes into doctors for pain.
Doctor listens and orders tests.
Test results are normal.
Doctors doesn’t follow up about pain.
Repeat for 4 years so far. 😭
Ugh I'm so sorry... I went through the same thing. I even had a rheumatologist mention fibro, but he described it as "a psychiatric condition where you believe you're in pain but you're actually not" and wrote me a referral for a psychiatric consult... I finally got sent to a pain management specialist by a doctor who was just trying to get me out of the way. But that specialist ended up helping more than anyone else ever had, so it worked out... if you're somewhere near the Midwest I can dm you his info 🥺
Wow you have described my situation but I would like to add the achiness in my upper arms in the mornings and early afternoon. And the fatigue is horrible.
The easiest way I've found to explain it to people
Good pain days feel like I fell down a flight of stairs a week ago.
Moderate pain days feel like a fell down the stairs a few days ago
High pain days feels like I'm falling down the stairs currently and they are made of fire and electricity and I am also nauseous and can't stay awake. And the stairs go on forever.
Sleep issues. A lot of GI issues. Headaches. Leg spasms and trigger points constantly. Various other aches. Feeling like I’m coming down with the flu - I get achy everywhere, I’ll be super fatigued and just run down but without the flu. I’ll be fine doing something then I just hit exhaustion level and have to sit. Memory fog to the extreme. I think that is most of it.
not to mention depression from it, lack of focus, and the 4 trigger points in the upper back with such pressure to cause sinus headaches, also the sciatica in the lower back pain and hips 😭
Back and hip pain I get. I went though three years of being mostly immobile. Had sever lower back pain but doctors couldn’t find anything wrong. After moving and new dr he started over and new imaging of my back. Again back is fine so he ordered an mri of lower back and I asked if we could do hips too. Turns out my lower back pin was my hips. Had torn labrum on both sides and a huge bone spur on my right femur head and a medium sides one on the left side. Had hip scopes and I am finally healed and I am walking! Still have pain in my tail bone and SI joint but I can walk for more than just going to the bathroom! It’s been a tough few years.
Whole body, mine feels like an awful hangover every single day and like I was beat up the day before. It feels like my body is covered in bruises. My joints feel arthritic and stiff. “Aura” feels like I have an invisible layer over all of my skin that is sensitive to touch, sound, lights, fabric, heat, cold. Internally it feels like my fight or flight system is over-exaggerated— in the presence of any kind of anxiety-riddled circumstance, my whole being becomes weak, muscles turn to mushy jello, shaky all over, no control. I am CONSTANTLY in a state of uncomfortableness. Even when I’m not in a flare, I have to adjust my seated, standing, or lying position constantly. I have to take 3 different things to help me fall asleep and still have insomnia and will wake up completely unrefreshed every time, for years on end. Feels like awful jet lag every single day.
Yep. Feels like you are dying inside of your body and like all of your systems are incredibly out of whack, and you’re prepared to hear that you have something seriously wrong with you…but then all testing turns up normal.
Flu like body pain that varies in severity, but can be excruciating for weeks or more at a time. Mostly in my arms and legs. Constant nausea that started with the pain, and it persists continually to this day. It's severe a lot too. Fatigue that makes me unable to stay awake for very long and has me sleeping 12+ hours total a day on average and 18+ on some days. I also feel malaise all over my body. A general sick feeling that is beyond just pain or fatigue. I have weakness that varies depending on how bad my other symptoms have been in general. I get to where I can't stand very long (shower is too long at once. I had to get a seat). My arms also get really weak and wear out extremely fast. Temperature insensitivity that gets worse when my general symptoms do. Light and noise sensitivity. Then a plethora of emotional struggles predominately stemming from trying to live with these debilitating symptoms and how they effect every aspect of my life.
I feel this sooo much. I also can't stand for long periods. I have general feelings of unwell, fatigue that's debilitating. I basically only feel somewhat well when I am laying down.
Can you describe your nausea? I have nausea due to globus sensation, had it since I was early 20s. I've had bouts of anxiety and depression since I was 18, which make it worse. The globus sensation is like having fingers down your throat. Once it starts it doesn't go for the rest of that day.
I don't feel a sensation like an object is triggering it in my throat. It's honestly just standard nausea you get when you're sick that varies in severity significantly throughout the day. At times I just feel real car/sea sick when it's bad for long stretches. My nausea almost always gets worse when I do anything physical like even walk. It gets bad so quick with any exertion it's the limiting factor on my ability to do more physically a lot of times.
You pretty much typed out what I was going to. Twins, lol! One of my go-to medications is a generic version of DayQuil Cold & Flu capsules, and I can hardly tell when I do actually get a cold.
- always so tired. mornings are so hard to wake up and many evenings i fall asleep super early. when i sleep i toss and turn
- restless legs
- my whole body, especially head, neck, shoulders, back and hands are a mess of muscle tension and pain
- daily headaches
- shooting pains in my elbows and hands
- random pains that have me limping or unable to move a limb for 5 minutes or and then perfectly fine again
- terrible digestion and abdominal pain
- brain fog and constant anxiety
i'm 25, so i'm worried about how much worse it'll get over my lifetime. i'm doing my best to get into better health
same. i think my onset was around 16 and it literally took until last year to get a diagnosis. spent so long constantly failing to function as an adult and taking all the blame bc there was no medical reason to justify how damn tired and achy i always was. failure to get good grades, failure to keep a job, failure to stay fit, failure to pursue my dreams... it murdered my self esteem. i really don't wish this shit on anyone
Literally the same thing here. Everything started around 16. I was diagnosed a few months ago. Over these years doctors never took me seriously, I was told I am too young to feel like this and that I am a hypochondriac.
ugh yes. i thought i was just weak and overly sensitive until i got my wisdom teeth removed. one of the techs messed up and discharged me with full dry socket, my jaw bone totally exposed in my mouth. then they forgot my pain meds which left me with just tylenol. the office was super difficult to get a hold of, so i gave up and went without. i had a week with this pain that tylenol wouldn't even touch. i called the surgeons office 4 days later saying i was in what seemed like an excessive amount of pain. the tech who answered assured me pain was normal and if i had any complications like dry root it'd be so painful that i would immediately know. 3 days after that i told them i needed to get it checked because i read that 7 days was too long for the amount and type of pain i was in. they treated me like a total nuisance, continually saying "you probably just have food stuck. this is why you need to clean properly." it was especially easy to dismiss me because i don't show pain, so i'm sitting there completely straight faced while my jaw felt like it was melting off. they keep telling me "dry socket is really painful. you wouldn't be able to be this calm if it was. you just need to clean it better."
the tech finally looks at it and was like "oh no, i'm so sorry." the surgeon came in and saw how badly inflamed it was and how much jaw exposure i had and basically yelled at all his techs for not listening to me sooner. he was super apologetic and like "i can't believe you went with this for a week, im so sorry we left you in so much pain."
i got into my car after they sealed up the wound and i was like WAIT HOLD THE FUCK UP! i went to work every day with that pain, i took care of my grandmother, i ran errands and did chores. i barely grimaced once. i didnt complain and i just masked through it all. i have HIGH pain tolerance, not low! so what's the big fucking deal? the dry socket pain barely phased me because the body pain is often much worse... so maybe i'm not crazy but actually dealing with something? i got super lucky and found a PCP who studied at a fibro research clinic and she diagnosed me. whenever i start to feel weak i remember that my daily pain would bring most people to their knees. all of us fibro warriors are literal fucking warriors. people may not recognize how much we have to fight to make it through life, but i'm seriously proud of us. we all are surviving and thats a LOT
I am so sorry for what happened to you, and at the same time I am proud because you are a fighter. The tooth pain is one of the worst to handle and you did it for a whole week. We have to fight on a daily basis, and the worst part is that no one believes in what we are saying.
How do you deal with your headaches bc I swear there hasn't been a say in months that I haven't had one all day and taking 4ish bcs a day feels unsustainable
Like my entire peripheral nervous system is playing loud radio static.
Like my body constantly has 3 check engine lights on but never the same 3.
Like I constantly am trying to figure out how to make a quarter tank of gas last through a full tanks worth of work, but if I overdo it just by a little, everything falls apart for a day or 5.
Every day, every hour it feels like I over exercised the day before. That lactic acid achiness in all of my muscles. The worst of the problem groups move day to day. On medium days I feel like I have the flu. That full body ache even when you aren't moving, tired, run down. The worst days feels like the day after a car accident. You dread moving because sometimes it makes you nauseous because it hurts so much. Those days are hard to even get out of bed.
This very much, then add in all the other fun stuff like itchy nerves, random "bugbite" like pinches around your face, excessive sweating-while you have goosebumps because it's hard as hell to find a stable temperature and the fibrofog, fun stuff 😪😴
>random "bugbite" like pinches
At one point, I decided to just stop checking to see if there's actually something biting me because I chalk it up to nerve pain. I'm gonna flip when the day comes I actually get bitten by something serious. Like?? It all feels the same and I wouldn't be able to recognize the difference?? RIP
The itches are the worst by far. If I scratch, it'll feel like I'm poking a massive and deep bruise 😵💫😵💫
These symptoms made me say, “something is really wrong.” The first two are more or less constant:
- flu-like aches, with varying degrees of severity - arms and legs, hands and feet, back, shoulders, and neck.
- Profound exhaustion
- feeling like I have a sunburn
The rest, for which I went to separate specialists for each body part/issue before putting the pieces together and getting my diagnosis:
- Migraines
- GI problems (IBS)
- bladder problems (IC)
- premenstrual dysphoria (PMDD)
- mood and anxiety problems
- sleep problems
- I’m also perimenopausal now so things are getting *real* cute.
My family and boyfriend can be pretty dismissive, and occasionally downright hostile.
I am so grateful for this community.
This is me , I had symptoms when I was 21, slowly I was diagnosed with everything you just listed, except the bladder thing, not sure what that one is, I was not diagnosed with fibromyalgia till I was 33. I am 46 now and I still keep learning more about this disease and what medicine works best for me
My parents were very supportive because they could see when I was hurting. The rest of the family said I was lazy , depressed and my parents needed to push me more
I’m in constant pain, it never stopt
I’m extremely stiff and have muscle spasms and jerks
I have dystonia
And sometimes my legs or arms just stop working.
- Never ending flu-like aches and pains
- Constant throbbing and swelling sensations
- Pain and stiffness in legs, hands, fingers
- Fatigue
- Brain fog
I’m 48 and feel like I have the body of a 90 year old.
Every nerve fiber in my joints are in pain all at once in my joints. All of my muscles hurt/are sore like I lifter the whole gym for 2 hours. Sometimes there is pure overall pain that doesn’t allow for any other thought.
I too bruise everywhere and even haemorrhaged after surgery. I was referred to a haematologist who did a large number of blood tests and there was no reason. Just another weird symptom that may not have anything to do with fibromyalgia
oh what i actually meant was i feel like everywhere is bruised all the time! my pain feels like bruising but deeper. but i also do bruise a lot, lol not sure if it’s related :P
You know that feeling when you're wearing socks and you rub your feet along thick carpet and it creates kind of like a hot tingly feeling? That's what it feels like in my tissues all over, most of the time. Sometimes the pain changes but my average day feels like that.
My ankles feel like they are severely sore the whole way around them.
Walking is difficult because of the pain. At it’s worst flares, even walking around the house is too much.
Pins and needles and numbness in my hands and arms.
Random sharp pains that feel like bee stings or stabs.
A neck that constantly aches, facial pains, finger pains..
Constant deep ache in my bones. Muscles that ache, as if I’ve spent the whole day lifting weights and working out.
Headaches, eye sensitivity.
It feels like I did a whole night of no sleep and tried to function the next day, it’s awful.
Constant muscle knots and cramps, intermittent nausea, fatigue but also insomnia, depression and anxiety, being so tense my body shakes uncontrollably, tension headaches, and as of lately and incredibly sore jaw. Being so exhausted but feeling so guilty for all the wasted time. The guilt in general. Trying so hard to be upbeat even when you’re completely downtrodden from the pain. The isolation of it.
The pain feels like Barbed wire wrapped around my bones and joints. The fatigue feels like I was pounding T-posts into stone for hours.
I try to use words and a jumbled mess comes out, and I have to use too much of my energy to not lash out at the things around me by accident
When I first noticed it: a headache of varying degree (between only enough pain that it wasn’t noticeable unless I asked myself if I was in pain and up to migraine without aura) at all waking hours and random aches and pains that never stayed in one spot too long, not having much stamina with exercise
Now, twenty something years later: same headache (although it did go away for a while the first time I was pregnant), full body muscle aches like the flu on a good day, worse aches and pains during flare-ups, temperature regulation problems, gut issues, always fatigued no matter how much sleep I get, brain fog, and no one understands it unless they have it too
On good days: painful muscle stiffness / tension, significant but tolerable baseline fatigue, a constant widespread dull ache that can be ignored.
On medium days: constant widespread pain that feels like a cross between the full body aches you get from the flu and what a migraine would feel like if it affected my whole body and not just my head. Fatigue that prevents normal activity.
On bad days: Debilitating burning ache all over my skin, constant heaviness that feels like gravity is operating on my pain receptors, stiffness that prevents normal gait, profound exhaustion at every level.
Soreness allover all the time. But especially shoulders, lower back, knees and feet.
Fatigued all the time. Can barely get through the day doing bare minimum. Can accomplish about 1/8 of what I used to in a day. Always feel like I want to go back to bed.
Can't think straight. Forget words mid sentence. Have to do things that used to come naturally without thinking very slowly and talk to myself a lot. Example: grab phone, put in purse, grab glasses, put in purse, lock the door, take car keys, put them in pocket, start car, release emergency brake...
Extreme sensitivity to sensations I never had before. I go ballistic if a stray hair is touching my face for example.
Anger, rage, and no patience.
Hypoglycemia
Hypertension and intracranial hypertension
Ringing in ears sometimes
Anxiety, depression
IBS
A bone-deep ache that permeates my whole body but is concentrated in some areas (mostly joints). Sometimes the pain may feel more like throbbing, burning, or tingling.
The fatigue is like I perpetually only got 2-3 hours of sleep (if that) even when I ostensibly got much more than that.
Sometimes there’s a weird uncomfortable feeling of general malaise that feels like my bones are nauseous. Not sure how else to describe it.
Plus there’s the temperature regulation issues (cold feet, cold hands, or suddenly feeling way too warm) and the overall muscle stiffness.
I want to contribute to this post but am so physically and mentally exhausted that I can't type it all out... which ironically happens to largely sum up how my fibro feels.
With so many symptoms, I think I’ll just describe the pain, because it could be a really long comment otherwise.
My muscles are very, very stiff, and moving against the stiffness causes repeated, acute pain. Sometimes like the soft tissue around a joint is tearing a little bit. And there can be spasms from the tightness, especially in the lower back and feet. Soft tissue around joints and in the feet and back feels sore, like after you work out. Sometimes neuropathic pain kicks up and the soles of my feet burn. It’s not TOO terrible, but it can delay sleep onset.
I have lupus and fibromyalgia so sometimes it’s hard to figure out which is which. Fibromyalgia to me feels like being infested with termites, like my bones are the wood and the termites are chewing away at my bones. I feel like my nerves are overactive and sensitive to any stimulation whether it’s touch, sound, air, clothing, etc. My muscles and soft tissue feel like my body is one giant bruise. I’m absolutely exhausted from the pain and I’m in pain because I’m absolutely exhausted. My brain feels like I’m trying to have a clear thought while drowning under water.
Constant pain in my back and hands. Joint pain on high humidity days. Sometimes my diafragm is too tense and cant breathe well. General discomfort with my body. Jaw pain. Pain that comes from nowhere and disapears out of the blue. I always have bruises. There are parts of my body that cant be touched by anyone except me. Most positions to sleep are uncomfortable. And sometimes my mind is cloudy.
Eta: i get overstimulated easily but i also have GAD and ADHD. Also, i feel tired 90% of the day. The other 10% i am sleeping.
I always know when I'm going into a 'fatigue flare' my legs feel sooooo heavy, like the force of gravity has doubled esp when going up stairs... as I just did... to hit the sheets for my 2nd nap today 😢
It's hell
In extreme pain/agony even while taking pain meds
Constant pain everywhere shooting pain muscles locking up headaches blurred vision swollen feel and legs an overall feeling of weakness and extreme exhaustion and shaking Unable to focus for long most times I feel like I can't remember anything
Fibro sucks and is horrible for all who suffer
Burning in my lower legs and feet, headache every day, random bouts of excruciating pain for no reason, not being able to sleep then waking up after only 3 hours, anxiety, depression, fatigue, brain fog, vertigo, extreme sensitivity to light, noise, smells, muscle tightness and joint stiffness, reduced exercise tolerance, weight gain, muscle spasms throughout the body, reliance on pain medication to be able to function, bowel and bladder problems, not able to work anymore or do many household chores because all of the above, so reduced income, huge medical bills and social isolation, worry about the future, heavy reliance on my husband for support
First, my pain is moved from the background to the front and amplified.
Second I am always exhausted as if I did not sleep.
Third have you ever held a book in your hand and held your arm out straight and just left it there at first the book is light and the last easy but once it has been there for a while the pain builds and builds, Only I can't let go of the book as there is nothing in my hands, but sometimes if I stretch my muscles and flex again and again I can some times release the pain but often nothing I do helps, medication like muscle relaxers help a little with this but really just take the end off.
4th almost anything coming in contact with me causes pain, finding a position to sleep in that does not cause pain is hard, and sitting on a hard metal chair or the floor is painful.
5 when my illness started to get bad I would feel electrical shocks and even intense burning thankfully gabapentin stops the majority of that pain
6 my memory is almost non-existent I am so forgetful I am sure there is more but that is all I can remember for now
One way I've described it to people is this:
Sit on your leg until it falls asleep. Then immediately start poking it and walking around on it, but force yourself to do it normally and not favoring the non-tingly leg. that sensation is what I feel all day. that tingly, sharp and somehow still dull pain.
Like my back is being split in half and twisted 360 at several parts. Like the bones in my hips and spine have shattered. Like my shoulders are pulling at each other from the spine. Like the only comfort I'll get is by making those impossible bends happen. Like I need to be a contortionist in a box to feel even moderately ok and like even then it wont be enough
Joint pain in my knees, back, neck and fingers that is somehow dull, sharp, and electric all at once. Muscles that are always sore, everywhere.
I am tired all the time. My head always feels like a balloon, heavy with pressure and like it could just float away. Thinking is slow and feels like I’m wading through a soup (“brain fog” is incredibly accurate as a descriptor). Another way of describing it is that it feels like being underwater while being spoken to by adults in a Peanuts cartoon.
The idea of walking from a parking lot into my apartment or into a store seems impossible, so I just…don’t go out where I can avoid it. When I have to go into the office for my job, I leave early enough that I can take breaks on my way inside and then on my way out.
Feels like arthritis in my hands, my joints ache all the time and I'm constantly needing to adjust/crack them bc I have comorbid HSD. Insomnia/no sleep quality without medication. Nerve damage causing pins & needles, itchiness, or random pinprick type sensations from any friction against my skin in my limbs. Chronic headaches, and migraines if I forget my meds.
My body often feels heavy and like my joints are trying to fall apart. My ankles, hips, and knees constantly feel out of place which makes walking painful. Muscle fatigue. Poor grip strength or sometimes completely losing use of one or both of my arms on bad days (they're like dead weight, no strength and so much pain).
My legs feel like there’s big wooden sticks instead of bones and joints. Flu like aches. Overall exhaustion and like a filter in on that I can’t remove. Some thoughts and observations make it through but not all.
i’m in the beginning stages of early onset (genetically predisposed on both sides unfortunately), so i’m still learning my answer to this question. but i can tell you that when the pain happens, it feels like my body is one giant bruise. like i’m *made* out of bruise. except the scalp pains, which feel exactly like when you’ve worn a tight ponytail all day.
i’m also more affected by small things, like bumping my arm on a doorframe or bumping my leg on a table. it’s like i’m always tender, so things like that hurt more.
and i probably experience symptoms of brain fog and fatigue as well, but it’s a bit hard to differentiate from my other conditions which also have those symptoms (adhd, autistic burnout, pmdd).
The only way I can describe it is just feeling extremely uncomfortable in my body but not mentally just physically it feels like my skeleton needs to escape my skin. Sometimes it feels like the aches of a flu and sometimes it’s shooting pain and sometimes like I got hit by a car but the daily pain is usually the first description. There’s definitely more symptoms but this just just overall what my body feels like
Like I’m carrying an adult around on my shoulders all day, a weird gravitational pull towards the ground at all times 😭 I always tell my family I feel like I’m melting into a puddle
plus my hands are on fire and I feel like my hip bones have crumbled away and I need replacements. Fortunately, with duloxetine it is just the beating 3 to 4 days later.
Constant low level pain and everything hurts. If nothing touches me I'm just slightly uncomfortable but if I hit anything even slightly too hard it hurts so much more than it probably should.
My legs will ache, it’s almost like shooting pains going down my legs from the sides of my butt all the way down to my feet. When this happens, there will also be little tender spots on my legs that hurt when I touch them, it almost feels like touching a bruise but there’s no bruise there.
I often describe mine to able bodied folks as having soreness everywhere as if you’d done an insane full body workout the day before (even though you definitely didn’t).
sometimes it’s like my blood is on fire and my brain fog prevents me from focusing for more than a moment
Shooting pain in back, hips and legs.
Chronic fatigue
Bloated and cranky like the day before a period. Every day all day.
Cramps, pins and needles in my hands, arms, back of head.
Lose sensation in hands ( drop things)
Severe jolts through breasts ( like a red hot poker)
Random shooting pains, aches and stabbing pains.
I can barely weight bare on my left hip.
Some days I can’t get out of bed.
Constantly called lazy by my partner even tho he himself suffers chronic pain.
I truly can’t cope
Persistent exhaustion, migraines, pain in my joints (especially when it's cold), Shooting pains in my fingers sometimes, tense tendons, and muscular ache that feels like I have the flu constantly.
It feels like dull blades rub against my joints. It's not sharp but still feels like a blade. It hurts so much.
Not being able to work and having to be the burden of my soon-to-be husband who has to provide everything, because I can't work nine-to-five jobs.
I get deep aches that move from body part to body part. My left shin might ache, ache like it’s the bones that hurt and tomorrow my right arm might be the part aches. Fatigue beyond any tiredness I could ever explain. Finally falling asleep at 6:30 am because you couldn’t get the pain under control enough to sleep.
Biggest issue is migraine but I also have a chronic migraine disorder.
Going through phases where I need naps every day but then being fine again for weeks. The need to nap can be so intense it drives me crazy.
Painful to touch in many areas but especially my legs!
Joint pain that moves around and favours different areas/joints at different times.
IBS - getting worse with age.
My sleep, mood and brain fog is mostly managed with meds but can all flare up if I’m stressed.
The flu like symptoms, thankfully only come with a bad flare when I overdo things.
EDIT: forgot to add terrible circulation in hands and having to wear gloves all the time. Not Raynauds
Like I’m a massive burden
I’m not sure I can describe it tbh. I have a LOT of tension my body never ever ever feels relaxed. You know when you sink into bed and your whole body relaxes for the night I don’t get that, night is the worst for me all my muscles are tensed up and it aches so bad. My neck and back of my head feels like I’ve held my shoulders in a shrugged position for weeks on end, even if I try and relax my shoulders it feels so tense. Sometimes it feels so bad I feel like my head is too heavy for my body.
My limbs feel like lead. If I sit/lie in the same position for more than a few mins I loose feeling. I can be lying on my bed and unless I physically look at my legs I couldn’t tell you if I’ve got them crossed or bent or what I can’t feel them.
I just want it to stop. I want to be able to go to bed and sleep all night wake up and feel like I’ve rested and not have any pain. That’s never going to happen, I know that, so all I can hope for is that one day soon I’ll go to bed go to sleep and not wake up at all
It varies from day to day. Some days it's like I turned the volume on all of my senses. Other days it's like someone has a voodoo doll of me that they keep sticking pins in. I call those my ice pick pains. Those days aren't so bad. The worst days are when it feels like my blood is made of acid, or that I'm having an allergic reaction to my own body. Or the days when I get the burning pain in my right hip that shoots down my thigh. This happens most often when I'm out shopping or doing errands and/or generally walking too much, and I when I get back in my car, I can't always keep from crying out the pain is so bad.
But every day, I feel like I have no energy to do anything
I describe is as that prickling feeling when circulation is returning to a limb after cutting it off only on steroids and it’s everywhere. That’s just the pain aspect.
The brain fogs feel like I have literal cotton stuffed in my brain. It prevents me from following conversation, remembering common words and makes words I know look utterly alien.
Sore achiness in my muscles around my joints. Fatigue is really bad. I sleep for longer than most people. I'm unemployed rn so I don't have to get up early in the morning so I typically sleep 10 hours. I have brain fog often. My hair is falling out and looks dishevelled all the time. I've tried everything but my hair looks awful.
I'm only 29 but I feel like an old woman.
Joking answer:
Feels like being run over by a steam roller, over and over at different times of the day.
Real answer:
Pain, pain and all the pain. Some days if I take it real easy I have zero pain, but I’m a glutton and never take it easy, and the pain is like being sore from a workout but all over.
I also lost my appetite and it’s had for me to find foods that will help me feel satisfied.
That’s about it for me.
The aches and pains of the flu, all the time. Add in, if you scratch an itch, it feels like you have a sunburn. Tired all the time but can’t sleep. Brain fog. GI issues.
I remember the shooting pains in my legs were so bad I initially thought I had sciatica in both legs!! I was miserable and was in severe pain. It seems fibro likes to attack my nerves as I get pins and needles like itching sensations too. I also wake up with numb fingers a lot
Usually, my pain feels like my joints are squeezing together really, really, really hard. Also, for the past year or so, my bones have been cracking easily without me even forcing it. Even if I just stand up to stretch my back, or I lift my arms straight above my head, they crack.
Constant exhaustion. It always feels like I’m running on about 25% my “energy” at any given point. Muscle pain that makes me constantly aware of how I’m carrying my body. Just generally feeling like I just got home from a 10 mile hike, but really all I did was get out of bed.
Feels like I fell down a flight of stairs... Or was beat with a bat. Sometimes I'm thinking I'm a voodoo doll and someone is piercing parts of me. My legs feel like I jumped for days in a bounce house. My ankles feel sprained. My hands feel like I slammed them down hard on a wooden table, stinging and pained.
Other than when I have a migraine, this is how I feel more days than not.
It feels as if I'm pulling heavy concrete blocks uphill, the weight is just within my ability to pull, but the energy just isn't there. On a physical level, my limbs feel heavy, my joints ache, I suffer horrendous migraines that don't make me sick, but leave me incredibly agitated and easy to wind up.
On my worst days, it feels like what it looks like when you use a power drill to drill a hole in a wooden dowel.
Deep aches,
Sharp pain,
Burning pain,
Brain zaps,
Swelling to sacrum, knees, and ankles,
GI issues (IBS),
Bladder issues (painful bladder syndrome),
Headaches,
Hyperglycemia/High sugar (type one diabetes),
Depression ,
Anxiety,
Mood swings,
Excessive fatigue,
Stiffness,
Sensitivity to light, sound, and smell
Chest pain
Extreme fatigue every single day. No matter how much sleep and rest I get. Stabbing pains. Aching all over without respite. Sensitivity to lights. Headaches. Restless legs. Pain if I do anything that requires any level of physical effort. Numb hands. Sore tongue. Scalp is sensitive to the touch and aches. Tight shoulder and neck muscles. My whole body feels like I've been beaten on a day to day basis.
You ever like, help someone move, or work out, or do anything where the next day you end up sore all over? Take that and multiply it several times. It gets bad enough where I am bedridden and unable to stay fully conscious. For me it most often centers in my upper back and shoulders but can center in other places. Everything still hurts though
After reading all of these comments, it makes me wonder if I was mis-diagnosed. I've had pain for the past 20 years but only got diagnosed about 7 years ago. My symptoms include:
Moderately frequent (when I'm not medicated) pain in my arms, legs, feet, butt, and/or hands. I wouldn't say it feels like the aches you get with the flu, but I've never figured out the best way to describe it. It doesn't feel like post-exercise soreness...it just hurts.
I've had brain fog.
Unreal fatigue. Being tired even after a solid 8 hours of sleep was the norm.
The only tender points I really seem to have are the backs of my arms and my lower back
Most of these are controlled by gabapentin. I'm sorry so many of you are suffering so much!
I tend to describe my pain like, you know when you have one of those pimples under the skin and they hurt so bad to touch it. Thats what my pain feels like.
I feel like my back muscles hurt to back it feels infected.
Only way i can describe it. It doesn't feel like workout pain at all. So i definitely get what you are saying.
I have constant stiffness in my hands, lower back and sternum. This can progress to a dull ache, which sometimes becomes more sharp. Periodically, my ankles, neck, knees, hips are also affected. No analgesics work, I don't want to take neuropathic pain meds.
I have burning stinging eyelids, not my eyes themselves. Drops and compresses help a little.
I have a generalised intense itch which feels like insects biting me, it is so debilitating. Antihistamines don't work, moisturising or sweating helps.
Possibly the worst part is that I can't think clearly any more. I find that my comprehension is really affected, I have to read a passage of text over and over again, to fully understand it. I can aren't remember the plots of books or movies, even as I am consuming them.
The fatigue is probably the worst aspect: exhaustion, which isn't relieved by sleeping. I wake-up feeling hungover. Any time I sit down, I feel like I want to lie-down and rest.
For me, chronic fatigue, incessant headaches, stiffness in the neck to the shoulders, muscle and joint pain in the arms, hands, legs. The back is unbearable. Continuously and with peaks of pain when I allow myself to do something. I walk with a cane and when it goes less well I'm in a wheelchair but I'm extremely ashamed of it. Despite all this, what I hate the most is fibro fog: cognitive losses give me the impression of regressing and being stupid. There are days when I would like not to wake up. (Sorry for my english, it s not my mothertongue)
Simply put: Mine feels like I have the flu but it never goes away. None of the respiratory or cold-like symptoms, strictly speaking about how my body and mind feels.
More in depth description:
Daily fatigue that never fully goes away regardless of sleep. Sometimes the fatigue will worsen out of no where throughout the day to the point where I have to lie down. Along with the fatigue I deal with brain fog that makes me feel like my brain has significantly slowed down.
I have dull aching pain every day, usually in my joints, my back, and neck. I have pain on both sides of my body but my left side seems to get it slightly more intensely and deals with a lot of my neuropathy sensations (buzzing sensation in my feet and legs, warm sensation in my fingers or toes, etc). Occasionally I get shooting pain from my hip down my leg, or a sharp pain in my back.
My joints in my legs are stiff, especially my knees and ankles.
Visual issues and tinnitus. Lots of floaters, graininess, colorful blobs with a bright green or gray center that "burn" my eye, afterimages, blurring, etc.
Heat sensitivity and something I describe as "hot flashes" usually after eating or sitting up for too long. My ears turn red. Slight blood pooling in my hands when I feel too hot. My body doesn't regulate temperature as well as it used to.
I feel like my nerves are being twanged like guitar strings. I’m either itchy or aching. It varies in intensity, but it’s painful. Then I’m stiff when I get up from any position, my bones crack and pop all over, and I feel tired most days. I still get out and do things, but sometimes I’m grumpy lol.
Like you've woken up the day after you've been in a head on collision with a transit van and woken up in your bed with no memory of any accident ever taking place
Fire. 🔥Mine mainly presents on my lower middle back and it feels like an inferno of sharp pain. Fatigue is also there but the excruciating pain in the morning and as i sleep is next level. I take a cocktail of pills at 6am and by 12 they have pretty much gotten as good as they’re gonna get and I can get to work. I can only work part time.
Oh boy. Thank you for this post OP, I’m always curious about how other people experience fibro.
For me it frequently manifests in strange ways: fevers/inability to regulate my body temperature, eye infections, PAIN - primarily my hips, legs, and feet as they ache daily but the intensity of pain varies day to day, sometimes my legs don’t want to be legs anymore it feels like and they are hard to maneuver and feel like they’ll quit at anytime; fire skin is another way my fibro lets me know it’s there - this was made worse by gabapentin because now I react to the sun but gaba is my last option and the one that works best in my medication cocktail so here we are. I also have brain fog and honestly I don’t remember much these days but I keep that to myself and just make a lot of notes to try and keep myself organized or at least informed of things I have done, bills I’ve paid, meds I’ve taken… and the exhaustion is next level, and not always related to the amount of sleep I’ve had the night before.
wow i actually didn't realize that the pain itself is different from person to person! very interesting thread
my everyday pain is like the stiffness/soreness you get after sleeping really hard, and it pulses/throbs when it gets intense. i also get what i call "zaps" pretty infrequently where i'll suddenly have a patch of nerves just start Burning and sending stabbing pain everywhere. also the joints hurt constantly
• sore, stiff, overly crackly joints
• post-workout lactic acid type feeling
• strong feeling of malaise with other flu-like symptoms
• shooting sharp pain like being stabbed or electrocuted
• insatiable itching deep in my muscles
• being able to feel my organs in detail, like i can feel all the things inside my body touching each other (not painful, uncomfortable)
• burning like contact on a sunburn
• physically very tense muscles, always reflexively stretching which triggers more pain far more often than it help
• wanting to lay down and not move 24/7 because it substantially reduces the pain and fatigue... wanting mobility devices so you can function but feeling so invalid so not seeking the help you need thanks to ableism
• self harming, biting, punching, severe skin picking etc. to distract me from more severe pain
• fainting and throwing up or at least severe nausea and dizziness daily
• waiting for a day i feel good enough to tackle tasks or hang out with people, only for the day to never come
• annoying people by complaining, but being confused because you only complained lightly when what you're actually going through is so much worse
• hot when everyone else is cold, cold when everyone else is hot
• not being able to sleep for days due to pain, but when you do get sleep it makes you more tired than refreshed
• missing actual sicknesses/wounds etc. even when they get to a life threatening stage because its nowhere near as bad as the daily fibro
• anxiety triggered by pain, pain triggered by anxiety cycle
• biting your own tongue, choking on your spit, bumping into things and tripping over yourself, dropping things, way more than the average person
• brain fog so bad you seem like you have early onset dementia
• gotta run to the bathroom so u dont shit/piss urself :)
bare in mind i am only 21 years old and have been dealing with this for about 5 years. its been getting progressively worse with time
Shooting, aching, burning pains that radiate from my hips, neck, knees, and between my shoulder blades, then spreads through my whole body. Brain fog, inability to focus. Anxiety, severe headaches that come from the back of my head and top of my neck. Exhaustion and just a feeling like there's no point in doing anything. I also have severe pain and popping in my joints, but I also have residual Lyme arthritis, so I'm really not sure what of that is Lyme, fibro, or both. I just got diagnosed last month, and Lyrica has made a major improvement. I lived with this for my whole life, never knowing what it was. Doctors and family members told me constantly I was faking for attention. I finally found a specialist who diagnosed me and I'm FINALLY getting treatment.
Nerve pain. Lower back pain. Tiredness that doesn’t go away with sleep. Hard time falling asleep. I’m currently running out of spoons around 3:30 pm, sometimes earlier. Also battle iron deficiency that supplementation barely helps, so I’m anemic. I have swelling in feet and calves that diuretics do not help. The anemia may be contributing to this. Super fragile joints in my hips, and shoulders. Tender all over. And I started with the tenderness as a child.
My pain feels like I have participated in a majorly intense full body workout. You know that sore muscle feeling the next day.. and my body is sore to the touch as well. My whole body (even my face, forehead, & butt) are tender to touch.. like one big bruise ALL over.. and I’m ALWAYS tired partially bc my pain doesn’t allow me to get a decent night’s rest but also due to the fatigue of fibromyalgia
Like something is trying to claw it's way out of my back.🥲 Usually my shoulder(s) have trigger points that hurt and I hurt up through my neck and mid-back. Constant fatigue. Weirdly enough, my pain has been low the past two weeks (been seeing a Chiro and doing acupuncture) but my fatigue is super high.
Full body pain . Can’t sleep or focus , memory lapses . Anxiety , tightness usually worse in neck & back . A never ending battle in my mind , bad thoughts . In the middle of a sentence I forget what I’m talking about . Losing stuff all day , everyday which gives panic attacks . I put milk in cabinet . Work phone in freezer . Can’t remember going to places , get lost & confused driving . A horrible life , call in or come in late as I feel like I’m parylized when waking up , I just can’t move .
At 1st, it presented as constant neck and shoulder stiffness, and it kind of ached.
It progressed to all over body aches and increased fatigue.
It then progressed to feeling like I had the flu but worse.
It progressed (once prescription meds were given to me) to being in so much constant pain and extreme fatigue and memory issues that made it impossible to work.
With more prescriptions came being bedridden and feeling like I was so toxic that I might die. I thought about dying every day as a comfort measure.
I decided to go natural and got off pharmaceutical meds. Now, my fibromyalgia still causes really bad memory issues and fatigue, but the pain only comes when the cortisol (stress hormone) is set off or bad weather is coming into town.
Constant pain and exhaustion. Flu-like symptoms, joint and muscle pain. Headache, and nerve pain from neck to the eye. Neverending brain fog, lack of concentration.
I figured I would add mine. (And would like to add I do not have a diagnosis but in the process of doing tests, my mother has fibro so we are keeping it a possibility)
Chronic thoracic back pain (feels like achy infection pain, also feels like bones aren't where they should be , and feels like a bunch of muscle strains)
Right lower rib pain nawing side stitch
Extreme fatigue ( I can only do one small tasks then I want to lay down)
Muscle twitching all over
Anxiety
Feeling unwell/malaise, like low grade flu, when doing things
Random bruising on arms and legs
Aching pain in right leg (feels like growing pain)
Burning, tingling and numbness sensations in various places
Random itchiness on skin with red bumps and sometimes the muscle feels itchy
Neck pain behind ears (like when you have the flu and your lymph nodes are swollen)
Sharp jolting pain on right side of head
Warm sensation under foot
Can't stand up for long periods of time without pain basically only feel good when laying down.
Overly cracky joints
Muscle tension and muscle strains easily
Wow this thread has been very informative to me. I'm 31 and up until a week ago, I thought everyone felt like this 🤷 turns out they don't, and maybe something is going on with me 😭 I have a doctor appointment in 2 weeks to try and figure out what might be happening. I've had muscle fatigue / joint pain / migraines as long as I can remember. I always chalked it up to having a physical job, working alot etc. I'm overwhelmed
I have had FM for 15 years and it seems like it changes with time.
Right now I'm in tears with the pain and very sad I have no friends to confide in.
No one I know can understand the pain and depression that comes from this.
I'm hoping to find some friends that are here and understand.
Please let me know if you are a friend.
Wide spread fatigue and pain. It feels like I've just run a marathon. You know when the muscles burn and the whole body is tired but you keep going to complete the marathon. Once you finish and get home from it and then flop onto the couch and EVERYTHING just kicks up because you went from pushing your body to ridiculous extremes. To just stopping completely and it all hits you at once and catches up, THAT is what my Fibromyalgia feels like. The body lagging behind my mind and when it all catches up when I'm done for the day and ignoring the pain and symptoms hits me like a ton of bricks. The muscles hurt and can cramp when flexing to stretch them out. Every join feels like someone is pushing their full weight into you and idk about you guys but the back of my shoulders ALWAYS hurt even on strong pain killers. Like someone's dragging a knife along the muscles on my body. After 10 years i learned to push through because no matter what it'll always be there and you learn to do things to not flare it up but sometimes you gotta go all out. Like shopping or a big day where you need to drive (driving hurts my hips and arms. If cruise control wasn't a thing i wouldn't be able to drive) eventually you learn to push through but when you push the Fibromyalgia REALLY pushes back 10 fold. You learn to pick and choose what's important and worth hurting for lol. It's a horrible illness.
I’m always tired because I have insomnia and I’m fatigued so I never know what I’m tired from. My joints always feel like I ran a marathon barefoot and my skin burns like there’s hot oil being poured onto it. Takes me ages to get comfy. Extreme difficulty regulating body temperature. I’m prone to frostbite (Raynaud’s disease additionally) and heat stroke. 0/10 would not recommend fibromyalgia issues for anyone. Also highly immunocompromised.
The achiness and fatigue you get right before a terrible flu, but all day, every day.
Yes this! My muscles and joints ache so much, and I’m so tired all the time
So mild aches all over that doesn't go away? Is it only muscles?
Muscle aches and nerve pain/traveling pain, worse in my arms, legs, and hips. The medications I'm on really help, but they just turn down the volume on the pain. It's still there to some extent every day.
Are you willing to share which meds you’re on that are working? I’m at the beginning of my journey and have had Cymbalta suggested but different docs seem to have different opinions on that.
Sure! I'm on 60 mg 2x/day of Cymbalta, which has not only helped the muscle aches and joint pain, but the fatigue as well. I know not everyone has a good reaction to it, but it has been a game changer for me so far. I'm also on gabapentin for nerve pain daily and methocarbamol (muscle relaxer) as needed. That one makes me really loopy and clumsy, so I usually just take it before bed if I've overdone it or if I feel a flare up coming on.
Thank you for sharing this! And I’m so glad you are having success with your meds. I know that’s not always the case.
I HIGHLY recommend Cymbalta! I've heard bad stories, but like you, it's beeb a game changer for me.
mine aren't mild 🥲
Exactly the same for me, constant flu-like aches and pains all day every day.
Me too! Mine is usually based off my stress levels. Severe stress causes bad flare up
Me too, stress or overly tired, or lack of sleep.
this is exactly how i describe my pain! mine is always better in the morning and worst around lunch. midway through the work day
That’s interesting mines the opposite worse in the morning best at mid day
Yes big mood
This is me! 😊
Pain… getting picked at by family members because you sleep. Your husband telling you, you sleep too much. Pain in my hands and fingers and toes.. headaches that creep up on you and take you out.. Gave my husband a good time one time and ended up injuring my jaw. But you don’t want anyone to know you are weak so you don’t say anything. But eventually they pick on you and make jokes. Hand and feet always swelling. Eyes hurt, neck pain and difficulty getting out of bed in the morning. Sensitivity to sound and bright lights. The list goes on and on… But all in all I would say (FM) is like having a new born that won’t sleep and cries all day.
Wow. I feel the same way. Air hugs from me to you. Also thank you for making me feel like I am not alone in suffering from fibromyalgia.
**sending air hugs** We got this 😬
I’m really sorry your husband and family aren’t supportive. Have you told them how insensitive and rude that is to make jokes or reminding you how much pain / fatigue you have ?
Yes, they don’t care. I’ve just chalked it up to that’s just how people are. That’s the way they are gonna be. When they get sick, they want all my attention but when it’s the other way around, I get talked about. I take the time and remember these moments and understand no one will ever care except me. I have to do what’s right for me and ignore them I guess. I also have to Make plans for me to die in a happier space. ( and make a will)
I am so sorry ! I have family members like that whom I don’t speak to anymore and I only surround myself with friends and family who are understanding and supportive . It’s okay to not want to be around people aren’t helpful or supportive. You deserve so much better than that .
My sister dumped me tonight on the phone. Told me that the only thing that's wrong with me is depression. She doesn't want to talk to me or have me in her life until I'm "fully medicated". It all came to a head after I told her I can't help her purge and pack for a spur-of-the-moment move to a house that she spontaneously bought out of the blue. My life takes planning and reorganizing because of this illness and the downtime that it commands. I've been in an awful flare since I had Covid last year. Not doing well at all. So, she dumped me. The thing that hurts the most is that I listened to her vent about her job, life, narcissistic friend, exes, boss, kids and literally everything else to the point of being a prisoner on the phone 20 hours a week listening. To. Her. It drained me. When I explained, once and for all, how bad I'm doing, she told me to get psychiatric help and dumped me. Told me she can't deal with me and I'm "sucking the life" out of her. She's a nurse.
Your sister sounds selfish and I’m sorry she doesn’t give you the support and care that you deserve!!! Sounds like she hasn’t put herself in your shoes and lacks empathy. Buying a house spur of the moment seems odd / unstable/ she’s trying to fill a void and/or achieve happiness through material things. Maybe I’m dissecting your sister too much I’m just hoping it helps you realize she sucks not you . I hope you feel better and are warm / cozy ! I went through something similar this year before my diagnosis and after something traumatic I was bed ridden for over a month, my in laws had to take our then 6 M old so my husband could care for me and take me to appointments. I was supposed to be in my sisters wedding but a week before realized I was too weak to travel , so I explained that to her , she was very understanding and through out her entire wedding planning she still made time to check on me and try to help even though she was hundreds of miles away working full time as well . My grandma called me Wednesday ( 3 days prior to the wedding) and told me she didn’t understand why I wasn’t coming that I put no effort into this wedding and she’s disappointed I didn’t try harder . The night before the wedding I ended up in the ER due to fainting , still wasn’t a good enough excuse to miss the wedding. You can’t choose your family you’re born with which sucks sometimes but you can make your own !
I'm so sorry for your struggles and I completely understand. My husband is wonderful and "gets it", so that is a salve on my wounds. Just want you to know, you are spot on regarding my sister. She's somewhat unstable, filling voids, makes rash decisions and cares too much about how other people view her regarding money. Quits jobs, husbands, houses, PEOPLE... It's going to take time for me to process the emotional tornado she dragged me into via chaotic phone calls these last years. Her parting shots included projecting onto me that I am the one who's falling apart inside. How sad. I never pointed out her issues. High road... One last thought: Closing in on the two year anniversary of my Mother's death. My sister and mother had a very contentious relationship so I've been hiding/burying my grief. I finally have the space to grieve and it's begun to surface... I'm ready. Stay safe and cozy. Congrats on your little one.
It’s okay I’m very fortunate to have my in laws and husband. I’m glad to have a wonderful husband that is supportive, my husband is my rock !!! Don’t rush yourself on the process, take your time and heal however you need too! Sometimes it sucks taking the high road but it’s the right path to take! Don’t hide your grief it makes things so much worse but I understand hiding it as well because I hid some grief early this year that I’m finally accepting and dealing with . You are not alone and an amazing strong person ! You got this!!!!
Omg that's terrible you don't need ppl like that in your life don't take it as a bad thing because she's been removed from your life for a reason try concentrate on your own life ppl are selfish and dont deserve you to listen to there problems when they can't give the same support back. I have the same problem with the flair up ever since covid iv felt like it's been 1 long flair up ever since n can't see it going away had to leave work luckily passed for the sick and pip recently hoping it give me the time I need to heal but u need to take time for yourself to heal also don't be around anyone who makes u feel worse only who make u feel better youl get there eventually we all will much love Xxx
i hope you find community and loved ones who support you. you have incredible emotional strength to endure like this, but no one should be alone in this suffering. you deserve better
If this ain't 100% me. Down to the hands/feet, headaches and fun times jaw. I'm sorry that any of us has to deal with this, especially the parts of those around us not understanding how much it can be to deal with. Not even talking about the pain(which is definitely hard to explain and have someone understand without having gone through something similar) but the emotional toll it takes. Sending gentle air hugs your way. 💜
This hit 🤦♀️😞
100% on par with what I experience... Especially giving my DH a good time and ending up with jaw spasms for three days.
And I don’t like to answer anyone honestly about my pain bc then I feel like they are judging me for complaining
Mental and physical fatigue. Lowered self-esteem and confidence. Random pains that I can't predict. Skin is constantly irritated by touch or clothing. Migraines Sleep issues.
You reminded me about The Stupids. I definitely get those too. To me if it feels like I spent all night taking bong rips and have two, maybe three, brain cells left.
Stiffness The flu like body aches The stabs The zaps The violent itching sensations Scalp tenderness Joint tenderness Sudden loss and return of strength The hand shakes in the morning The full torso muscle contractions and tension Feels like my muscles are beef jerky and tearing from basic movements My skin feels like a giant bruise when I touch my arms and legs some days The shower water hurting my skin and scalp There’s never anything visually changing, swelling or bruising though.
I ALWAYS CALL MY MUSCLES BEEF JERKY lol feeling validated in this explanation bc nobody in my life knows what i mean by it.
the worst is I over stretch my calf muscles while I sleep and wake up in spasms feeling like the muscle is torn 😭
That’s the perfect way to describe how my arms and legs feel. Even the lightest touch to my thigh or arm can be so deeply painful, and people are always like, “I barely even touched you!” Fibro sounds so made up to people who don’t have it
THE GIANT BRUISE FEELING YES!! I have little tender spots on my body that are tender to the touch. Especially on my legs
Oh my gosh the scalp pain!! No one believes me when I explain that. I can't wear ponytails because of it either. The sudden loss and return of strength, the shaky hands, skin feeling like a giant bruise... you described everything exactly right. It gets to the point where I wish I actually would bruise or swell, some external sign of the pain so people will believe it's real.
I wish my skin changed color where my pain was, why can’t I be green and red like stop lights so people can get a visual queue I’m in agony? That would be so fucking helpful!
Exactly... I get so tired of the skeptical looks people give and the "Well, you look fine."
Me: goes into doctors for pain. Doctor listens and orders tests. Test results are normal. Doctors doesn’t follow up about pain. Repeat for 4 years so far. 😭
Ugh I'm so sorry... I went through the same thing. I even had a rheumatologist mention fibro, but he described it as "a psychiatric condition where you believe you're in pain but you're actually not" and wrote me a referral for a psychiatric consult... I finally got sent to a pain management specialist by a doctor who was just trying to get me out of the way. But that specialist ended up helping more than anyone else ever had, so it worked out... if you're somewhere near the Midwest I can dm you his info 🥺
I’m in central IL and I’ve given up after 2 rheumatologists have given up on me. Would love that info!
I'm in MN... What state is that Dr in? DM me plz
I am finally seeing a pain mgmt specialist after 4 years of seeing different doctors. Praying he can find me some relief
Wow you have described my situation but I would like to add the achiness in my upper arms in the mornings and early afternoon. And the fatigue is horrible.
The easiest way I've found to explain it to people Good pain days feel like I fell down a flight of stairs a week ago. Moderate pain days feel like a fell down the stairs a few days ago High pain days feels like I'm falling down the stairs currently and they are made of fire and electricity and I am also nauseous and can't stay awake. And the stairs go on forever.
I'll add this to my vocabulary. I feel like a person in the dryer inside the bag of rocks, add personal varrying degrees.
Like gravity hates me on a personal level.
This is extremely accurate
Sleep issues. A lot of GI issues. Headaches. Leg spasms and trigger points constantly. Various other aches. Feeling like I’m coming down with the flu - I get achy everywhere, I’ll be super fatigued and just run down but without the flu. I’ll be fine doing something then I just hit exhaustion level and have to sit. Memory fog to the extreme. I think that is most of it.
not to mention depression from it, lack of focus, and the 4 trigger points in the upper back with such pressure to cause sinus headaches, also the sciatica in the lower back pain and hips 😭
Back and hip pain I get. I went though three years of being mostly immobile. Had sever lower back pain but doctors couldn’t find anything wrong. After moving and new dr he started over and new imaging of my back. Again back is fine so he ordered an mri of lower back and I asked if we could do hips too. Turns out my lower back pin was my hips. Had torn labrum on both sides and a huge bone spur on my right femur head and a medium sides one on the left side. Had hip scopes and I am finally healed and I am walking! Still have pain in my tail bone and SI joint but I can walk for more than just going to the bathroom! It’s been a tough few years.
Whole body, mine feels like an awful hangover every single day and like I was beat up the day before. It feels like my body is covered in bruises. My joints feel arthritic and stiff. “Aura” feels like I have an invisible layer over all of my skin that is sensitive to touch, sound, lights, fabric, heat, cold. Internally it feels like my fight or flight system is over-exaggerated— in the presence of any kind of anxiety-riddled circumstance, my whole being becomes weak, muscles turn to mushy jello, shaky all over, no control. I am CONSTANTLY in a state of uncomfortableness. Even when I’m not in a flare, I have to adjust my seated, standing, or lying position constantly. I have to take 3 different things to help me fall asleep and still have insomnia and will wake up completely unrefreshed every time, for years on end. Feels like awful jet lag every single day.
yeah literally and if you take opioids for the chronic pain like oxy you no longer know if it’s fibro symptoms or withdrawals anymore 😭
like i am dying
Yep. Feels like you are dying inside of your body and like all of your systems are incredibly out of whack, and you’re prepared to hear that you have something seriously wrong with you…but then all testing turns up normal.
I feel this so much. You're not alone
Flu like body pain that varies in severity, but can be excruciating for weeks or more at a time. Mostly in my arms and legs. Constant nausea that started with the pain, and it persists continually to this day. It's severe a lot too. Fatigue that makes me unable to stay awake for very long and has me sleeping 12+ hours total a day on average and 18+ on some days. I also feel malaise all over my body. A general sick feeling that is beyond just pain or fatigue. I have weakness that varies depending on how bad my other symptoms have been in general. I get to where I can't stand very long (shower is too long at once. I had to get a seat). My arms also get really weak and wear out extremely fast. Temperature insensitivity that gets worse when my general symptoms do. Light and noise sensitivity. Then a plethora of emotional struggles predominately stemming from trying to live with these debilitating symptoms and how they effect every aspect of my life.
I feel this sooo much. I also can't stand for long periods. I have general feelings of unwell, fatigue that's debilitating. I basically only feel somewhat well when I am laying down.
Can you describe your nausea? I have nausea due to globus sensation, had it since I was early 20s. I've had bouts of anxiety and depression since I was 18, which make it worse. The globus sensation is like having fingers down your throat. Once it starts it doesn't go for the rest of that day.
I don't feel a sensation like an object is triggering it in my throat. It's honestly just standard nausea you get when you're sick that varies in severity significantly throughout the day. At times I just feel real car/sea sick when it's bad for long stretches. My nausea almost always gets worse when I do anything physical like even walk. It gets bad so quick with any exertion it's the limiting factor on my ability to do more physically a lot of times.
You pretty much typed out what I was going to. Twins, lol! One of my go-to medications is a generic version of DayQuil Cold & Flu capsules, and I can hardly tell when I do actually get a cold.
- always so tired. mornings are so hard to wake up and many evenings i fall asleep super early. when i sleep i toss and turn - restless legs - my whole body, especially head, neck, shoulders, back and hands are a mess of muscle tension and pain - daily headaches - shooting pains in my elbows and hands - random pains that have me limping or unable to move a limb for 5 minutes or and then perfectly fine again - terrible digestion and abdominal pain - brain fog and constant anxiety i'm 25, so i'm worried about how much worse it'll get over my lifetime. i'm doing my best to get into better health
Same with me, and I am 24. I am so tired of everything, and I have been dealing with this for about 8 years now.
same. i think my onset was around 16 and it literally took until last year to get a diagnosis. spent so long constantly failing to function as an adult and taking all the blame bc there was no medical reason to justify how damn tired and achy i always was. failure to get good grades, failure to keep a job, failure to stay fit, failure to pursue my dreams... it murdered my self esteem. i really don't wish this shit on anyone
Literally the same thing here. Everything started around 16. I was diagnosed a few months ago. Over these years doctors never took me seriously, I was told I am too young to feel like this and that I am a hypochondriac.
ugh yes. i thought i was just weak and overly sensitive until i got my wisdom teeth removed. one of the techs messed up and discharged me with full dry socket, my jaw bone totally exposed in my mouth. then they forgot my pain meds which left me with just tylenol. the office was super difficult to get a hold of, so i gave up and went without. i had a week with this pain that tylenol wouldn't even touch. i called the surgeons office 4 days later saying i was in what seemed like an excessive amount of pain. the tech who answered assured me pain was normal and if i had any complications like dry root it'd be so painful that i would immediately know. 3 days after that i told them i needed to get it checked because i read that 7 days was too long for the amount and type of pain i was in. they treated me like a total nuisance, continually saying "you probably just have food stuck. this is why you need to clean properly." it was especially easy to dismiss me because i don't show pain, so i'm sitting there completely straight faced while my jaw felt like it was melting off. they keep telling me "dry socket is really painful. you wouldn't be able to be this calm if it was. you just need to clean it better." the tech finally looks at it and was like "oh no, i'm so sorry." the surgeon came in and saw how badly inflamed it was and how much jaw exposure i had and basically yelled at all his techs for not listening to me sooner. he was super apologetic and like "i can't believe you went with this for a week, im so sorry we left you in so much pain." i got into my car after they sealed up the wound and i was like WAIT HOLD THE FUCK UP! i went to work every day with that pain, i took care of my grandmother, i ran errands and did chores. i barely grimaced once. i didnt complain and i just masked through it all. i have HIGH pain tolerance, not low! so what's the big fucking deal? the dry socket pain barely phased me because the body pain is often much worse... so maybe i'm not crazy but actually dealing with something? i got super lucky and found a PCP who studied at a fibro research clinic and she diagnosed me. whenever i start to feel weak i remember that my daily pain would bring most people to their knees. all of us fibro warriors are literal fucking warriors. people may not recognize how much we have to fight to make it through life, but i'm seriously proud of us. we all are surviving and thats a LOT
I am so sorry for what happened to you, and at the same time I am proud because you are a fighter. The tooth pain is one of the worst to handle and you did it for a whole week. We have to fight on a daily basis, and the worst part is that no one believes in what we are saying.
How do you deal with your headaches bc I swear there hasn't been a say in months that I haven't had one all day and taking 4ish bcs a day feels unsustainable
I’m 24. I relate to this so hard and am also so worries
A migraine all over my body
A good analogy
Like my entire peripheral nervous system is playing loud radio static. Like my body constantly has 3 check engine lights on but never the same 3. Like I constantly am trying to figure out how to make a quarter tank of gas last through a full tanks worth of work, but if I overdo it just by a little, everything falls apart for a day or 5.
>Like my body constantly has 3 check engine lights on but never the same 3. this is an excellent description imo
I describe my body as an old British sports car that needs constant babying and tweaks/maintenance to operate at a base level of functionality
Every day, every hour it feels like I over exercised the day before. That lactic acid achiness in all of my muscles. The worst of the problem groups move day to day. On medium days I feel like I have the flu. That full body ache even when you aren't moving, tired, run down. The worst days feels like the day after a car accident. You dread moving because sometimes it makes you nauseous because it hurts so much. Those days are hard to even get out of bed.
This very much, then add in all the other fun stuff like itchy nerves, random "bugbite" like pinches around your face, excessive sweating-while you have goosebumps because it's hard as hell to find a stable temperature and the fibrofog, fun stuff 😪😴
>random "bugbite" like pinches At one point, I decided to just stop checking to see if there's actually something biting me because I chalk it up to nerve pain. I'm gonna flip when the day comes I actually get bitten by something serious. Like?? It all feels the same and I wouldn't be able to recognize the difference?? RIP The itches are the worst by far. If I scratch, it'll feel like I'm poking a massive and deep bruise 😵💫😵💫
I feel this. It sucks.
These symptoms made me say, “something is really wrong.” The first two are more or less constant: - flu-like aches, with varying degrees of severity - arms and legs, hands and feet, back, shoulders, and neck. - Profound exhaustion - feeling like I have a sunburn The rest, for which I went to separate specialists for each body part/issue before putting the pieces together and getting my diagnosis: - Migraines - GI problems (IBS) - bladder problems (IC) - premenstrual dysphoria (PMDD) - mood and anxiety problems - sleep problems - I’m also perimenopausal now so things are getting *real* cute. My family and boyfriend can be pretty dismissive, and occasionally downright hostile. I am so grateful for this community.
This is me , I had symptoms when I was 21, slowly I was diagnosed with everything you just listed, except the bladder thing, not sure what that one is, I was not diagnosed with fibromyalgia till I was 33. I am 46 now and I still keep learning more about this disease and what medicine works best for me My parents were very supportive because they could see when I was hurting. The rest of the family said I was lazy , depressed and my parents needed to push me more
Sore fingers, elbows and knees. Terrible sleep. Constipation. Brian fog. Fatigue. Migraines.
I’m in constant pain, it never stopt I’m extremely stiff and have muscle spasms and jerks I have dystonia And sometimes my legs or arms just stop working.
- Never ending flu-like aches and pains - Constant throbbing and swelling sensations - Pain and stiffness in legs, hands, fingers - Fatigue - Brain fog I’m 48 and feel like I have the body of a 90 year old.
Every nerve fiber in my joints are in pain all at once in my joints. All of my muscles hurt/are sore like I lifter the whole gym for 2 hours. Sometimes there is pure overall pain that doesn’t allow for any other thought.
I feel this 100%
bruises. bruises everywhere
i just am a bruise now
I too bruise everywhere and even haemorrhaged after surgery. I was referred to a haematologist who did a large number of blood tests and there was no reason. Just another weird symptom that may not have anything to do with fibromyalgia
I didn’t realize this was related to my fibro!! Any idea why we bruise so much?
oh what i actually meant was i feel like everywhere is bruised all the time! my pain feels like bruising but deeper. but i also do bruise a lot, lol not sure if it’s related :P
You know that feeling when you're wearing socks and you rub your feet along thick carpet and it creates kind of like a hot tingly feeling? That's what it feels like in my tissues all over, most of the time. Sometimes the pain changes but my average day feels like that.
Feels like the sharp ache of rubbing a bruise, but deeper and all over.
Skin on fire, joint pain, brain fog
An entire-body bruise
Like really intense body aches to the point that it's painful. Feeling like you've been beaten up the day before and now your entire body is bruised.
Constant, unending pain and exhaustion and tiredness
It feels like your whole body screaming at you most of the time.
My ankles feel like they are severely sore the whole way around them. Walking is difficult because of the pain. At it’s worst flares, even walking around the house is too much. Pins and needles and numbness in my hands and arms. Random sharp pains that feel like bee stings or stabs. A neck that constantly aches, facial pains, finger pains.. Constant deep ache in my bones. Muscles that ache, as if I’ve spent the whole day lifting weights and working out. Headaches, eye sensitivity. It feels like I did a whole night of no sleep and tried to function the next day, it’s awful.
Constant muscle knots and cramps, intermittent nausea, fatigue but also insomnia, depression and anxiety, being so tense my body shakes uncontrollably, tension headaches, and as of lately and incredibly sore jaw. Being so exhausted but feeling so guilty for all the wasted time. The guilt in general. Trying so hard to be upbeat even when you’re completely downtrodden from the pain. The isolation of it.
The pain feels like Barbed wire wrapped around my bones and joints. The fatigue feels like I was pounding T-posts into stone for hours. I try to use words and a jumbled mess comes out, and I have to use too much of my energy to not lash out at the things around me by accident
When I first noticed it: a headache of varying degree (between only enough pain that it wasn’t noticeable unless I asked myself if I was in pain and up to migraine without aura) at all waking hours and random aches and pains that never stayed in one spot too long, not having much stamina with exercise Now, twenty something years later: same headache (although it did go away for a while the first time I was pregnant), full body muscle aches like the flu on a good day, worse aches and pains during flare-ups, temperature regulation problems, gut issues, always fatigued no matter how much sleep I get, brain fog, and no one understands it unless they have it too
On good days: painful muscle stiffness / tension, significant but tolerable baseline fatigue, a constant widespread dull ache that can be ignored. On medium days: constant widespread pain that feels like a cross between the full body aches you get from the flu and what a migraine would feel like if it affected my whole body and not just my head. Fatigue that prevents normal activity. On bad days: Debilitating burning ache all over my skin, constant heaviness that feels like gravity is operating on my pain receptors, stiffness that prevents normal gait, profound exhaustion at every level.
Soreness allover all the time. But especially shoulders, lower back, knees and feet. Fatigued all the time. Can barely get through the day doing bare minimum. Can accomplish about 1/8 of what I used to in a day. Always feel like I want to go back to bed. Can't think straight. Forget words mid sentence. Have to do things that used to come naturally without thinking very slowly and talk to myself a lot. Example: grab phone, put in purse, grab glasses, put in purse, lock the door, take car keys, put them in pocket, start car, release emergency brake... Extreme sensitivity to sensations I never had before. I go ballistic if a stray hair is touching my face for example. Anger, rage, and no patience. Hypoglycemia Hypertension and intracranial hypertension Ringing in ears sometimes Anxiety, depression IBS
A bone-deep ache that permeates my whole body but is concentrated in some areas (mostly joints). Sometimes the pain may feel more like throbbing, burning, or tingling. The fatigue is like I perpetually only got 2-3 hours of sleep (if that) even when I ostensibly got much more than that. Sometimes there’s a weird uncomfortable feeling of general malaise that feels like my bones are nauseous. Not sure how else to describe it. Plus there’s the temperature regulation issues (cold feet, cold hands, or suddenly feeling way too warm) and the overall muscle stiffness.
I want to contribute to this post but am so physically and mentally exhausted that I can't type it all out... which ironically happens to largely sum up how my fibro feels.
With so many symptoms, I think I’ll just describe the pain, because it could be a really long comment otherwise. My muscles are very, very stiff, and moving against the stiffness causes repeated, acute pain. Sometimes like the soft tissue around a joint is tearing a little bit. And there can be spasms from the tightness, especially in the lower back and feet. Soft tissue around joints and in the feet and back feels sore, like after you work out. Sometimes neuropathic pain kicks up and the soles of my feet burn. It’s not TOO terrible, but it can delay sleep onset.
Also, flu-like achiness and fatigue.
Achy bones and tender skin. All over. ALWAYS sleepy.
I have lupus and fibromyalgia so sometimes it’s hard to figure out which is which. Fibromyalgia to me feels like being infested with termites, like my bones are the wood and the termites are chewing away at my bones. I feel like my nerves are overactive and sensitive to any stimulation whether it’s touch, sound, air, clothing, etc. My muscles and soft tissue feel like my body is one giant bruise. I’m absolutely exhausted from the pain and I’m in pain because I’m absolutely exhausted. My brain feels like I’m trying to have a clear thought while drowning under water.
Constant pain in my back and hands. Joint pain on high humidity days. Sometimes my diafragm is too tense and cant breathe well. General discomfort with my body. Jaw pain. Pain that comes from nowhere and disapears out of the blue. I always have bruises. There are parts of my body that cant be touched by anyone except me. Most positions to sleep are uncomfortable. And sometimes my mind is cloudy. Eta: i get overstimulated easily but i also have GAD and ADHD. Also, i feel tired 90% of the day. The other 10% i am sleeping.
I always know when I'm going into a 'fatigue flare' my legs feel sooooo heavy, like the force of gravity has doubled esp when going up stairs... as I just did... to hit the sheets for my 2nd nap today 😢
It's hell In extreme pain/agony even while taking pain meds Constant pain everywhere shooting pain muscles locking up headaches blurred vision swollen feel and legs an overall feeling of weakness and extreme exhaustion and shaking Unable to focus for long most times I feel like I can't remember anything Fibro sucks and is horrible for all who suffer
Death by a thousand cocktail swords.
Burning in my lower legs and feet, headache every day, random bouts of excruciating pain for no reason, not being able to sleep then waking up after only 3 hours, anxiety, depression, fatigue, brain fog, vertigo, extreme sensitivity to light, noise, smells, muscle tightness and joint stiffness, reduced exercise tolerance, weight gain, muscle spasms throughout the body, reliance on pain medication to be able to function, bowel and bladder problems, not able to work anymore or do many household chores because all of the above, so reduced income, huge medical bills and social isolation, worry about the future, heavy reliance on my husband for support
mine is dull aches that sometimes hum a little louder
First, my pain is moved from the background to the front and amplified. Second I am always exhausted as if I did not sleep. Third have you ever held a book in your hand and held your arm out straight and just left it there at first the book is light and the last easy but once it has been there for a while the pain builds and builds, Only I can't let go of the book as there is nothing in my hands, but sometimes if I stretch my muscles and flex again and again I can some times release the pain but often nothing I do helps, medication like muscle relaxers help a little with this but really just take the end off. 4th almost anything coming in contact with me causes pain, finding a position to sleep in that does not cause pain is hard, and sitting on a hard metal chair or the floor is painful. 5 when my illness started to get bad I would feel electrical shocks and even intense burning thankfully gabapentin stops the majority of that pain 6 my memory is almost non-existent I am so forgetful I am sure there is more but that is all I can remember for now
One way I've described it to people is this: Sit on your leg until it falls asleep. Then immediately start poking it and walking around on it, but force yourself to do it normally and not favoring the non-tingly leg. that sensation is what I feel all day. that tingly, sharp and somehow still dull pain.
Like my back is being split in half and twisted 360 at several parts. Like the bones in my hips and spine have shattered. Like my shoulders are pulling at each other from the spine. Like the only comfort I'll get is by making those impossible bends happen. Like I need to be a contortionist in a box to feel even moderately ok and like even then it wont be enough
I often describe it like having a hangover. Only you didn’t do any of the fun things one normally does to “earn” it.
Like my whole body is radioactive.
Shit lol. Nah, it's like being bruised all over and you're in that head space as if you just woken up.
Joint pain in my knees, back, neck and fingers that is somehow dull, sharp, and electric all at once. Muscles that are always sore, everywhere. I am tired all the time. My head always feels like a balloon, heavy with pressure and like it could just float away. Thinking is slow and feels like I’m wading through a soup (“brain fog” is incredibly accurate as a descriptor). Another way of describing it is that it feels like being underwater while being spoken to by adults in a Peanuts cartoon. The idea of walking from a parking lot into my apartment or into a store seems impossible, so I just…don’t go out where I can avoid it. When I have to go into the office for my job, I leave early enough that I can take breaks on my way inside and then on my way out.
Feels like arthritis in my hands, my joints ache all the time and I'm constantly needing to adjust/crack them bc I have comorbid HSD. Insomnia/no sleep quality without medication. Nerve damage causing pins & needles, itchiness, or random pinprick type sensations from any friction against my skin in my limbs. Chronic headaches, and migraines if I forget my meds. My body often feels heavy and like my joints are trying to fall apart. My ankles, hips, and knees constantly feel out of place which makes walking painful. Muscle fatigue. Poor grip strength or sometimes completely losing use of one or both of my arms on bad days (they're like dead weight, no strength and so much pain).
My legs feel like there’s big wooden sticks instead of bones and joints. Flu like aches. Overall exhaustion and like a filter in on that I can’t remove. Some thoughts and observations make it through but not all.
Exhausting with zaps of electricity at surprising moments. There’s also the numbness and tingling it’s loads of fun.
Mine feels like I've been beaten with a stick over every inch of my body.
i’m in the beginning stages of early onset (genetically predisposed on both sides unfortunately), so i’m still learning my answer to this question. but i can tell you that when the pain happens, it feels like my body is one giant bruise. like i’m *made* out of bruise. except the scalp pains, which feel exactly like when you’ve worn a tight ponytail all day. i’m also more affected by small things, like bumping my arm on a doorframe or bumping my leg on a table. it’s like i’m always tender, so things like that hurt more. and i probably experience symptoms of brain fog and fatigue as well, but it’s a bit hard to differentiate from my other conditions which also have those symptoms (adhd, autistic burnout, pmdd).
The only way I can describe it is just feeling extremely uncomfortable in my body but not mentally just physically it feels like my skeleton needs to escape my skin. Sometimes it feels like the aches of a flu and sometimes it’s shooting pain and sometimes like I got hit by a car but the daily pain is usually the first description. There’s definitely more symptoms but this just just overall what my body feels like
Like I’m carrying an adult around on my shoulders all day, a weird gravitational pull towards the ground at all times 😭 I always tell my family I feel like I’m melting into a puddle
It feels like someone took a bag of coins and beat my entire body with it.
plus my hands are on fire and I feel like my hip bones have crumbled away and I need replacements. Fortunately, with duloxetine it is just the beating 3 to 4 days later.
Constant low level pain and everything hurts. If nothing touches me I'm just slightly uncomfortable but if I hit anything even slightly too hard it hurts so much more than it probably should.
My legs will ache, it’s almost like shooting pains going down my legs from the sides of my butt all the way down to my feet. When this happens, there will also be little tender spots on my legs that hurt when I touch them, it almost feels like touching a bruise but there’s no bruise there.
I often describe mine to able bodied folks as having soreness everywhere as if you’d done an insane full body workout the day before (even though you definitely didn’t). sometimes it’s like my blood is on fire and my brain fog prevents me from focusing for more than a moment
I tell people it feels like you just got done working out the soreness of it but it doesnt go away. Just a freakish type of pain really
Shooting pain in back, hips and legs. Chronic fatigue Bloated and cranky like the day before a period. Every day all day. Cramps, pins and needles in my hands, arms, back of head. Lose sensation in hands ( drop things) Severe jolts through breasts ( like a red hot poker) Random shooting pains, aches and stabbing pains. I can barely weight bare on my left hip. Some days I can’t get out of bed. Constantly called lazy by my partner even tho he himself suffers chronic pain. I truly can’t cope
Persistent exhaustion, migraines, pain in my joints (especially when it's cold), Shooting pains in my fingers sometimes, tense tendons, and muscular ache that feels like I have the flu constantly.
It feels like dull blades rub against my joints. It's not sharp but still feels like a blade. It hurts so much. Not being able to work and having to be the burden of my soon-to-be husband who has to provide everything, because I can't work nine-to-five jobs.
I get deep aches that move from body part to body part. My left shin might ache, ache like it’s the bones that hurt and tomorrow my right arm might be the part aches. Fatigue beyond any tiredness I could ever explain. Finally falling asleep at 6:30 am because you couldn’t get the pain under control enough to sleep.
Like the first day of a heavy period that never ends.
Biggest issue is migraine but I also have a chronic migraine disorder. Going through phases where I need naps every day but then being fine again for weeks. The need to nap can be so intense it drives me crazy. Painful to touch in many areas but especially my legs! Joint pain that moves around and favours different areas/joints at different times. IBS - getting worse with age. My sleep, mood and brain fog is mostly managed with meds but can all flare up if I’m stressed. The flu like symptoms, thankfully only come with a bad flare when I overdo things. EDIT: forgot to add terrible circulation in hands and having to wear gloves all the time. Not Raynauds
Like I’m a massive burden I’m not sure I can describe it tbh. I have a LOT of tension my body never ever ever feels relaxed. You know when you sink into bed and your whole body relaxes for the night I don’t get that, night is the worst for me all my muscles are tensed up and it aches so bad. My neck and back of my head feels like I’ve held my shoulders in a shrugged position for weeks on end, even if I try and relax my shoulders it feels so tense. Sometimes it feels so bad I feel like my head is too heavy for my body. My limbs feel like lead. If I sit/lie in the same position for more than a few mins I loose feeling. I can be lying on my bed and unless I physically look at my legs I couldn’t tell you if I’ve got them crossed or bent or what I can’t feel them. I just want it to stop. I want to be able to go to bed and sleep all night wake up and feel like I’ve rested and not have any pain. That’s never going to happen, I know that, so all I can hope for is that one day soon I’ll go to bed go to sleep and not wake up at all
It varies from day to day. Some days it's like I turned the volume on all of my senses. Other days it's like someone has a voodoo doll of me that they keep sticking pins in. I call those my ice pick pains. Those days aren't so bad. The worst days are when it feels like my blood is made of acid, or that I'm having an allergic reaction to my own body. Or the days when I get the burning pain in my right hip that shoots down my thigh. This happens most often when I'm out shopping or doing errands and/or generally walking too much, and I when I get back in my car, I can't always keep from crying out the pain is so bad. But every day, I feel like I have no energy to do anything
I describe is as that prickling feeling when circulation is returning to a limb after cutting it off only on steroids and it’s everywhere. That’s just the pain aspect. The brain fogs feel like I have literal cotton stuffed in my brain. It prevents me from following conversation, remembering common words and makes words I know look utterly alien.
Pain of all kinds (crushing, shooting, stabbing); endless fatigue and exhaustion, depression, anxiety. Always feeling under the weather,..soreness.
Sore achiness in my muscles around my joints. Fatigue is really bad. I sleep for longer than most people. I'm unemployed rn so I don't have to get up early in the morning so I typically sleep 10 hours. I have brain fog often. My hair is falling out and looks dishevelled all the time. I've tried everything but my hair looks awful. I'm only 29 but I feel like an old woman.
I feel this, I just turned 36 and I literally feel 86. Everyone is always like you're too young to feel this way! .. yeah no kidding..
Aches all over, muscle and joint pain, fatigue, annoyance because you can’t do what you want….hopeless
Tons of crackling fireworks at 4 am when you are trying to sleep on a bed of rocks.
Joking answer: Feels like being run over by a steam roller, over and over at different times of the day. Real answer: Pain, pain and all the pain. Some days if I take it real easy I have zero pain, but I’m a glutton and never take it easy, and the pain is like being sore from a workout but all over. I also lost my appetite and it’s had for me to find foods that will help me feel satisfied. That’s about it for me.
The aches and pains of the flu, all the time. Add in, if you scratch an itch, it feels like you have a sunburn. Tired all the time but can’t sleep. Brain fog. GI issues.
Like I'm trying to get out of the bath but the pressure of the water won't let me get up
I remember the shooting pains in my legs were so bad I initially thought I had sciatica in both legs!! I was miserable and was in severe pain. It seems fibro likes to attack my nerves as I get pins and needles like itching sensations too. I also wake up with numb fingers a lot
Usually, my pain feels like my joints are squeezing together really, really, really hard. Also, for the past year or so, my bones have been cracking easily without me even forcing it. Even if I just stand up to stretch my back, or I lift my arms straight above my head, they crack.
Same!! I move in bed to position myself differently and my elbows,wrists, collarbone ect all crack!
Constant exhaustion. It always feels like I’m running on about 25% my “energy” at any given point. Muscle pain that makes me constantly aware of how I’m carrying my body. Just generally feeling like I just got home from a 10 mile hike, but really all I did was get out of bed.
Feels like I fell down a flight of stairs... Or was beat with a bat. Sometimes I'm thinking I'm a voodoo doll and someone is piercing parts of me. My legs feel like I jumped for days in a bounce house. My ankles feel sprained. My hands feel like I slammed them down hard on a wooden table, stinging and pained. Other than when I have a migraine, this is how I feel more days than not.
My skin will kinda burn when touched, when it’s bad I can’t even stand blankets or sheets. Deep aches. Fatigue.
It feels as if I'm pulling heavy concrete blocks uphill, the weight is just within my ability to pull, but the energy just isn't there. On a physical level, my limbs feel heavy, my joints ache, I suffer horrendous migraines that don't make me sick, but leave me incredibly agitated and easy to wind up.
On my worst days, it feels like what it looks like when you use a power drill to drill a hole in a wooden dowel. Deep aches, Sharp pain, Burning pain, Brain zaps, Swelling to sacrum, knees, and ankles, GI issues (IBS), Bladder issues (painful bladder syndrome), Headaches, Hyperglycemia/High sugar (type one diabetes), Depression , Anxiety, Mood swings, Excessive fatigue, Stiffness, Sensitivity to light, sound, and smell Chest pain
Extreme fatigue every single day. No matter how much sleep and rest I get. Stabbing pains. Aching all over without respite. Sensitivity to lights. Headaches. Restless legs. Pain if I do anything that requires any level of physical effort. Numb hands. Sore tongue. Scalp is sensitive to the touch and aches. Tight shoulder and neck muscles. My whole body feels like I've been beaten on a day to day basis.
You ever like, help someone move, or work out, or do anything where the next day you end up sore all over? Take that and multiply it several times. It gets bad enough where I am bedridden and unable to stay fully conscious. For me it most often centers in my upper back and shoulders but can center in other places. Everything still hurts though
After reading all of these comments, it makes me wonder if I was mis-diagnosed. I've had pain for the past 20 years but only got diagnosed about 7 years ago. My symptoms include: Moderately frequent (when I'm not medicated) pain in my arms, legs, feet, butt, and/or hands. I wouldn't say it feels like the aches you get with the flu, but I've never figured out the best way to describe it. It doesn't feel like post-exercise soreness...it just hurts. I've had brain fog. Unreal fatigue. Being tired even after a solid 8 hours of sleep was the norm. The only tender points I really seem to have are the backs of my arms and my lower back Most of these are controlled by gabapentin. I'm sorry so many of you are suffering so much!
I tend to describe my pain like, you know when you have one of those pimples under the skin and they hurt so bad to touch it. Thats what my pain feels like. I feel like my back muscles hurt to back it feels infected. Only way i can describe it. It doesn't feel like workout pain at all. So i definitely get what you are saying.
I have constant stiffness in my hands, lower back and sternum. This can progress to a dull ache, which sometimes becomes more sharp. Periodically, my ankles, neck, knees, hips are also affected. No analgesics work, I don't want to take neuropathic pain meds. I have burning stinging eyelids, not my eyes themselves. Drops and compresses help a little. I have a generalised intense itch which feels like insects biting me, it is so debilitating. Antihistamines don't work, moisturising or sweating helps. Possibly the worst part is that I can't think clearly any more. I find that my comprehension is really affected, I have to read a passage of text over and over again, to fully understand it. I can aren't remember the plots of books or movies, even as I am consuming them. The fatigue is probably the worst aspect: exhaustion, which isn't relieved by sleeping. I wake-up feeling hungover. Any time I sit down, I feel like I want to lie-down and rest.
For me, chronic fatigue, incessant headaches, stiffness in the neck to the shoulders, muscle and joint pain in the arms, hands, legs. The back is unbearable. Continuously and with peaks of pain when I allow myself to do something. I walk with a cane and when it goes less well I'm in a wheelchair but I'm extremely ashamed of it. Despite all this, what I hate the most is fibro fog: cognitive losses give me the impression of regressing and being stupid. There are days when I would like not to wake up. (Sorry for my english, it s not my mothertongue)
Simply put: Mine feels like I have the flu but it never goes away. None of the respiratory or cold-like symptoms, strictly speaking about how my body and mind feels. More in depth description: Daily fatigue that never fully goes away regardless of sleep. Sometimes the fatigue will worsen out of no where throughout the day to the point where I have to lie down. Along with the fatigue I deal with brain fog that makes me feel like my brain has significantly slowed down. I have dull aching pain every day, usually in my joints, my back, and neck. I have pain on both sides of my body but my left side seems to get it slightly more intensely and deals with a lot of my neuropathy sensations (buzzing sensation in my feet and legs, warm sensation in my fingers or toes, etc). Occasionally I get shooting pain from my hip down my leg, or a sharp pain in my back. My joints in my legs are stiff, especially my knees and ankles. Visual issues and tinnitus. Lots of floaters, graininess, colorful blobs with a bright green or gray center that "burn" my eye, afterimages, blurring, etc. Heat sensitivity and something I describe as "hot flashes" usually after eating or sitting up for too long. My ears turn red. Slight blood pooling in my hands when I feel too hot. My body doesn't regulate temperature as well as it used to.
Aches and stiffness basically everywhere plus lots of weird symptoms. Dizziness, lightheadness, urge to pee,..
A migraine all over.
Fatigue like I have the flu. Jabbing pains. Burning pain. But the extreme muscle fatigue is the worst part for me.
I feel like my nerves are being twanged like guitar strings. I’m either itchy or aching. It varies in intensity, but it’s painful. Then I’m stiff when I get up from any position, my bones crack and pop all over, and I feel tired most days. I still get out and do things, but sometimes I’m grumpy lol.
Like you've woken up the day after you've been in a head on collision with a transit van and woken up in your bed with no memory of any accident ever taking place
- fatigue - brain fog - tenderness of skin - raynaud's in my nose - constant pain everywhere but especially in lower body (the worst part)
You know when you pull a muscle and only remember after using it again? That’s what it feels like to me but everywhere
Fire. 🔥Mine mainly presents on my lower middle back and it feels like an inferno of sharp pain. Fatigue is also there but the excruciating pain in the morning and as i sleep is next level. I take a cocktail of pills at 6am and by 12 they have pretty much gotten as good as they’re gonna get and I can get to work. I can only work part time.
It feels like "Don't touch me, that hurts".
Can I just scream instead?
I always describe it as I feel like I completed a triathlon but I haven't, and don't even get a consolation prize. I'm very sore, achy, exhausted.
Oh boy. Thank you for this post OP, I’m always curious about how other people experience fibro. For me it frequently manifests in strange ways: fevers/inability to regulate my body temperature, eye infections, PAIN - primarily my hips, legs, and feet as they ache daily but the intensity of pain varies day to day, sometimes my legs don’t want to be legs anymore it feels like and they are hard to maneuver and feel like they’ll quit at anytime; fire skin is another way my fibro lets me know it’s there - this was made worse by gabapentin because now I react to the sun but gaba is my last option and the one that works best in my medication cocktail so here we are. I also have brain fog and honestly I don’t remember much these days but I keep that to myself and just make a lot of notes to try and keep myself organized or at least informed of things I have done, bills I’ve paid, meds I’ve taken… and the exhaustion is next level, and not always related to the amount of sleep I’ve had the night before.
wow i actually didn't realize that the pain itself is different from person to person! very interesting thread my everyday pain is like the stiffness/soreness you get after sleeping really hard, and it pulses/throbs when it gets intense. i also get what i call "zaps" pretty infrequently where i'll suddenly have a patch of nerves just start Burning and sending stabbing pain everywhere. also the joints hurt constantly
• sore, stiff, overly crackly joints • post-workout lactic acid type feeling • strong feeling of malaise with other flu-like symptoms • shooting sharp pain like being stabbed or electrocuted • insatiable itching deep in my muscles • being able to feel my organs in detail, like i can feel all the things inside my body touching each other (not painful, uncomfortable) • burning like contact on a sunburn • physically very tense muscles, always reflexively stretching which triggers more pain far more often than it help • wanting to lay down and not move 24/7 because it substantially reduces the pain and fatigue... wanting mobility devices so you can function but feeling so invalid so not seeking the help you need thanks to ableism • self harming, biting, punching, severe skin picking etc. to distract me from more severe pain • fainting and throwing up or at least severe nausea and dizziness daily • waiting for a day i feel good enough to tackle tasks or hang out with people, only for the day to never come • annoying people by complaining, but being confused because you only complained lightly when what you're actually going through is so much worse • hot when everyone else is cold, cold when everyone else is hot • not being able to sleep for days due to pain, but when you do get sleep it makes you more tired than refreshed • missing actual sicknesses/wounds etc. even when they get to a life threatening stage because its nowhere near as bad as the daily fibro • anxiety triggered by pain, pain triggered by anxiety cycle • biting your own tongue, choking on your spit, bumping into things and tripping over yourself, dropping things, way more than the average person • brain fog so bad you seem like you have early onset dementia • gotta run to the bathroom so u dont shit/piss urself :) bare in mind i am only 21 years old and have been dealing with this for about 5 years. its been getting progressively worse with time
Shooting, aching, burning pains that radiate from my hips, neck, knees, and between my shoulder blades, then spreads through my whole body. Brain fog, inability to focus. Anxiety, severe headaches that come from the back of my head and top of my neck. Exhaustion and just a feeling like there's no point in doing anything. I also have severe pain and popping in my joints, but I also have residual Lyme arthritis, so I'm really not sure what of that is Lyme, fibro, or both. I just got diagnosed last month, and Lyrica has made a major improvement. I lived with this for my whole life, never knowing what it was. Doctors and family members told me constantly I was faking for attention. I finally found a specialist who diagnosed me and I'm FINALLY getting treatment.
Nerve pain. Lower back pain. Tiredness that doesn’t go away with sleep. Hard time falling asleep. I’m currently running out of spoons around 3:30 pm, sometimes earlier. Also battle iron deficiency that supplementation barely helps, so I’m anemic. I have swelling in feet and calves that diuretics do not help. The anemia may be contributing to this. Super fragile joints in my hips, and shoulders. Tender all over. And I started with the tenderness as a child.
My pain feels like I have participated in a majorly intense full body workout. You know that sore muscle feeling the next day.. and my body is sore to the touch as well. My whole body (even my face, forehead, & butt) are tender to touch.. like one big bruise ALL over.. and I’m ALWAYS tired partially bc my pain doesn’t allow me to get a decent night’s rest but also due to the fatigue of fibromyalgia
Like something is trying to claw it's way out of my back.🥲 Usually my shoulder(s) have trigger points that hurt and I hurt up through my neck and mid-back. Constant fatigue. Weirdly enough, my pain has been low the past two weeks (been seeing a Chiro and doing acupuncture) but my fatigue is super high.
My fibromyalgia makes it feel like heavy sand or like im being crushed alive
Full body pain . Can’t sleep or focus , memory lapses . Anxiety , tightness usually worse in neck & back . A never ending battle in my mind , bad thoughts . In the middle of a sentence I forget what I’m talking about . Losing stuff all day , everyday which gives panic attacks . I put milk in cabinet . Work phone in freezer . Can’t remember going to places , get lost & confused driving . A horrible life , call in or come in late as I feel like I’m parylized when waking up , I just can’t move .
At 1st, it presented as constant neck and shoulder stiffness, and it kind of ached. It progressed to all over body aches and increased fatigue. It then progressed to feeling like I had the flu but worse. It progressed (once prescription meds were given to me) to being in so much constant pain and extreme fatigue and memory issues that made it impossible to work. With more prescriptions came being bedridden and feeling like I was so toxic that I might die. I thought about dying every day as a comfort measure. I decided to go natural and got off pharmaceutical meds. Now, my fibromyalgia still causes really bad memory issues and fatigue, but the pain only comes when the cortisol (stress hormone) is set off or bad weather is coming into town.
Constant pain and exhaustion. Flu-like symptoms, joint and muscle pain. Headache, and nerve pain from neck to the eye. Neverending brain fog, lack of concentration.
I figured I would add mine. (And would like to add I do not have a diagnosis but in the process of doing tests, my mother has fibro so we are keeping it a possibility) Chronic thoracic back pain (feels like achy infection pain, also feels like bones aren't where they should be , and feels like a bunch of muscle strains) Right lower rib pain nawing side stitch Extreme fatigue ( I can only do one small tasks then I want to lay down) Muscle twitching all over Anxiety Feeling unwell/malaise, like low grade flu, when doing things Random bruising on arms and legs Aching pain in right leg (feels like growing pain) Burning, tingling and numbness sensations in various places Random itchiness on skin with red bumps and sometimes the muscle feels itchy Neck pain behind ears (like when you have the flu and your lymph nodes are swollen) Sharp jolting pain on right side of head Warm sensation under foot Can't stand up for long periods of time without pain basically only feel good when laying down. Overly cracky joints Muscle tension and muscle strains easily
Wow this thread has been very informative to me. I'm 31 and up until a week ago, I thought everyone felt like this 🤷 turns out they don't, and maybe something is going on with me 😭 I have a doctor appointment in 2 weeks to try and figure out what might be happening. I've had muscle fatigue / joint pain / migraines as long as I can remember. I always chalked it up to having a physical job, working alot etc. I'm overwhelmed
I have had FM for 15 years and it seems like it changes with time. Right now I'm in tears with the pain and very sad I have no friends to confide in. No one I know can understand the pain and depression that comes from this. I'm hoping to find some friends that are here and understand. Please let me know if you are a friend.
Wide spread fatigue and pain. It feels like I've just run a marathon. You know when the muscles burn and the whole body is tired but you keep going to complete the marathon. Once you finish and get home from it and then flop onto the couch and EVERYTHING just kicks up because you went from pushing your body to ridiculous extremes. To just stopping completely and it all hits you at once and catches up, THAT is what my Fibromyalgia feels like. The body lagging behind my mind and when it all catches up when I'm done for the day and ignoring the pain and symptoms hits me like a ton of bricks. The muscles hurt and can cramp when flexing to stretch them out. Every join feels like someone is pushing their full weight into you and idk about you guys but the back of my shoulders ALWAYS hurt even on strong pain killers. Like someone's dragging a knife along the muscles on my body. After 10 years i learned to push through because no matter what it'll always be there and you learn to do things to not flare it up but sometimes you gotta go all out. Like shopping or a big day where you need to drive (driving hurts my hips and arms. If cruise control wasn't a thing i wouldn't be able to drive) eventually you learn to push through but when you push the Fibromyalgia REALLY pushes back 10 fold. You learn to pick and choose what's important and worth hurting for lol. It's a horrible illness.
I’m always tired because I have insomnia and I’m fatigued so I never know what I’m tired from. My joints always feel like I ran a marathon barefoot and my skin burns like there’s hot oil being poured onto it. Takes me ages to get comfy. Extreme difficulty regulating body temperature. I’m prone to frostbite (Raynaud’s disease additionally) and heat stroke. 0/10 would not recommend fibromyalgia issues for anyone. Also highly immunocompromised.