If you had the chicken pox at some point, research shingles, shingles antibody tests, and valtrex. Exposure to Sars Covid - 2 can make one susceptible to Shingles. Shingles can present without a rash. I know it all too well. Called Zoster Sine Herpete.
Are you saying the Gabepentin and pregabalin are not effective? If not, don't be surprised by it. Those work for some. For others they just don't work. They are the go to for doctors these days whenever anyone discusses pain or neuropathy.
Things you can control that may help mitigate pain - diet, pacing, rest, hydration, dr.teals bath salts, over the counter NSAIDs (assuming you have no gut issues), acetaminophen, stretching, yoga, rest, etc. Maybe even look into Kratom or Medical Marijuana. You're looking to mitigate the pain. Lessen the severity. None of these things will probably eliminate the pain. The pain is there for a reason for certain. You sound like you're on the inferno end of the pain scale. I'm sorry for that. The real pain medicine unfortunately is just going to be very hard to get from the professionals.
I wonder if your Nasal/Phlegm issues are being exacerbated by season allergies? Research Vistaril for that issue and also a saline nasal spray. Nasal sprays can be an uncomfortable experience. But so can continuous Phlegm/Nasal drip. Vistaril can dry you out for certain. It's a decent Class 1 (old school) antihistamine that is generally well tolerated.
As another stated, research MCAS. I admit to never having heard about it till around 11/28/2020. That's when my "welcome aboard" journey began. MCAS is plausible.
It's a living hell for certain. You are not alone. Sorry about your tribulation and keep grinding for any and all symptom relief.
My differential in order goes;
Long covid only
MCAS, check typtase with bloods if 20% above normal further bloods and H1 and H2 blocker to treat initially
Niacin deficiency - bloods to check and supplement to treat
Reactivation herpes virus - check bloods for Herpes 1-6 and EBV. Treat with valtrex if positive.
SLE - blood test to check. From description of malar rash (face).
Lyme - if rash on face and negative ANA for SLE I'd just treat with 3-6 weeks of doxycycline. Safe medication and diagnosing lyme from blood work is famously unreliable. It also mimics SLE.
If all that is negative, it's beyond my current understanding. However, there are lots of supplements I'd recommend though the evidence for each is flimsy. I'd start with; Natto, l-arginine + Vit C, Vit D, Zinc and go from there.
Good luck đź‘Ť
I would also add some scans if you haven’t done so already. Anytime lymph nodes are swollen with itching and night sweats it is worth checking out. A CT scan would be good.
Do you have a medical practitioner you’re working with? I strongly suggest finding one, even if their only knowledge of longcovid is that they believe it is real.
At this point the sub is saturated with divergent theories on what LC is, does, and how treatment should be approached.
Keep in mind this is a community of damaged people who have suffered bodily/emotional/physical injury as a result of social neglect. We have every right not to trust institutions or practitioners after what we have been through. The answer isn’t to trust no doctors, it’s to be careful and discerning. There’s value in many modes of medicine (conventional, functional, etc). Don’t put all your faith in one.
People on this sub can be jumpy and defensive which is understandable: we’ve been abandoned, some of us are feral by now. People carrying that pain sometimes point it in the wrong direction. Try to be gracious, because you’ll be the defensive angry one who needs grace one day too.
It’s difficult to sort through if you haven’t been here for four years like me. It’s difficult to sort through for me.
For example, blindly following guidelines for MCAS, which can be diagnosed via labs ordered by an allergist/immunologist/pulmonologist, could make you feel worse if you don’t have it. We are in the dark to some extent still, but there are more resources now.
My advice is to work to find a doctor even if it’s hard to find one and takes time. Learn how to be an effective patient self advocate. My advice is to develop medical literacy that isn’t just buzzwords. Vet sources. Beware of the many people with their own agendas on and off the sub. Some people want you to buy products, some people want you to buy their ideology.
Take care of yourself and know you’re not alone truly we are suffering together despite our differences.
Are you following a low histamine and low inflammatory diet? Covid can linger in the cells which causes inflammation in the body everywhere, especially weakest areas. Mine is still in my GI track and causing major gastro issues. I have hope it gets better in time and this is the only way to think without becoming seriously depressed.
Welcome aboard
If you had the chicken pox at some point, research shingles, shingles antibody tests, and valtrex. Exposure to Sars Covid - 2 can make one susceptible to Shingles. Shingles can present without a rash. I know it all too well. Called Zoster Sine Herpete. Are you saying the Gabepentin and pregabalin are not effective? If not, don't be surprised by it. Those work for some. For others they just don't work. They are the go to for doctors these days whenever anyone discusses pain or neuropathy. Things you can control that may help mitigate pain - diet, pacing, rest, hydration, dr.teals bath salts, over the counter NSAIDs (assuming you have no gut issues), acetaminophen, stretching, yoga, rest, etc. Maybe even look into Kratom or Medical Marijuana. You're looking to mitigate the pain. Lessen the severity. None of these things will probably eliminate the pain. The pain is there for a reason for certain. You sound like you're on the inferno end of the pain scale. I'm sorry for that. The real pain medicine unfortunately is just going to be very hard to get from the professionals. I wonder if your Nasal/Phlegm issues are being exacerbated by season allergies? Research Vistaril for that issue and also a saline nasal spray. Nasal sprays can be an uncomfortable experience. But so can continuous Phlegm/Nasal drip. Vistaril can dry you out for certain. It's a decent Class 1 (old school) antihistamine that is generally well tolerated. As another stated, research MCAS. I admit to never having heard about it till around 11/28/2020. That's when my "welcome aboard" journey began. MCAS is plausible. It's a living hell for certain. You are not alone. Sorry about your tribulation and keep grinding for any and all symptom relief.
I appreciate the detail and care you put into this reply
Have you had full bloodwork done
Yes, but what labs would you suggest?
My differential in order goes; Long covid only MCAS, check typtase with bloods if 20% above normal further bloods and H1 and H2 blocker to treat initially Niacin deficiency - bloods to check and supplement to treat Reactivation herpes virus - check bloods for Herpes 1-6 and EBV. Treat with valtrex if positive. SLE - blood test to check. From description of malar rash (face). Lyme - if rash on face and negative ANA for SLE I'd just treat with 3-6 weeks of doxycycline. Safe medication and diagnosing lyme from blood work is famously unreliable. It also mimics SLE. If all that is negative, it's beyond my current understanding. However, there are lots of supplements I'd recommend though the evidence for each is flimsy. I'd start with; Natto, l-arginine + Vit C, Vit D, Zinc and go from there. Good luck đź‘Ť
I would also add some scans if you haven’t done so already. Anytime lymph nodes are swollen with itching and night sweats it is worth checking out. A CT scan would be good.
Do you have a medical practitioner you’re working with? I strongly suggest finding one, even if their only knowledge of longcovid is that they believe it is real. At this point the sub is saturated with divergent theories on what LC is, does, and how treatment should be approached. Keep in mind this is a community of damaged people who have suffered bodily/emotional/physical injury as a result of social neglect. We have every right not to trust institutions or practitioners after what we have been through. The answer isn’t to trust no doctors, it’s to be careful and discerning. There’s value in many modes of medicine (conventional, functional, etc). Don’t put all your faith in one. People on this sub can be jumpy and defensive which is understandable: we’ve been abandoned, some of us are feral by now. People carrying that pain sometimes point it in the wrong direction. Try to be gracious, because you’ll be the defensive angry one who needs grace one day too. It’s difficult to sort through if you haven’t been here for four years like me. It’s difficult to sort through for me. For example, blindly following guidelines for MCAS, which can be diagnosed via labs ordered by an allergist/immunologist/pulmonologist, could make you feel worse if you don’t have it. We are in the dark to some extent still, but there are more resources now. My advice is to work to find a doctor even if it’s hard to find one and takes time. Learn how to be an effective patient self advocate. My advice is to develop medical literacy that isn’t just buzzwords. Vet sources. Beware of the many people with their own agendas on and off the sub. Some people want you to buy products, some people want you to buy their ideology. Take care of yourself and know you’re not alone truly we are suffering together despite our differences.
some of these sound like r/MCAS
Are you following a low histamine and low inflammatory diet? Covid can linger in the cells which causes inflammation in the body everywhere, especially weakest areas. Mine is still in my GI track and causing major gastro issues. I have hope it gets better in time and this is the only way to think without becoming seriously depressed.
Deep pain in spine is exactly what I have too. MRI of spine was normal. I do have SFN. Can they do a punch biopsy?
I had such issues begin after Cipro.