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sfn worsen with drugs and supplements

Messages
97
I wonder if anyones small fiber neuropathy here worsen with certain kinds of drugs and supplements?

I have idiopathic small fiber neuropathy treatment resistant that I have tried IVIG, steroids, nsaids and so on. I am on gabapentin 900 mg daily which helps a little about pain and sleeping nothing for my movement problems and weakness. time to time I take etadolac for pain.

as you could guess pain and being physically limited results in depression so I am in depression , I have anxiety as well. God this is hard to live and work like this in pain tingling electric shocks all the time. therefore I decided to give a try with a psychiatrist and started to prozac according to suggestions. the problem is I feel cold, electric shocks and burning went haywire since I started the drug which is a low dose in the beginning.

so my question is it possible ssri make my situation worse? or is it a side effect? how long should I wait? I feel the same with some herbals like nigella sativa and supplements like magnesium they made burning way worse. thanks. if anyone have same kind of problems like I have I would please if you comment.
 

Wishful

Senior Member
Messages
6,015
Location
Alberta
I think it's possible for nearly anything to worsen ME symptoms, and symptoms from other diseases. We're all different, and our various biological processes are interconnected with many more, so what works well for one person might have the opposite effect for someone else.

Dealing with ME seems to be a process of learning what makes you feel better or worse. If X makes you feel worse, avoid it, regardless of what effect it's supposed to have on other, mostly healthy people.
 

JadeD

Senior Member
Messages
172
Location
UK
My SFN has often got a lot worse with medication and I don’t understand why. SSRIs made my SFN go absolutely nuts. Weird pulsating electrical sensations, tremors, hypertension, sweating etc.
 

Dysfunkion

Senior Member
Messages
355
I over the past months saw a little benefit in daily life from switching out all my supplements with the most hypoallergenic versions of each possible. There is currently one brand for most of them I handle well and I'm going to be devastated if they ever stop selling. It's been quite the minefield when it comes to supplements as I'll have different reactions to things entirely based on their fillers, like it took me the entire summer of messing around just to find the single vitamin D3 supplement I can tolerate and it's by the same company I talked about up there.

Usually I deal with dietary triggers for mine the most and I have very few safe foods, I can eat more but there is consequences and they're accumulative which makes finding what is specifically doing what very complex. Most of my neuropathy is concentrated in my head face but I will get tension elsewhere on my body, spasms, a random spot on my right hand that just decides to start burning for no reason sometimes. Normally with me the neuropathy is either cold feeling in my face and scalp, or it feels like it's a mild fever and is more burny. I have more general energy overall when it's in cold mode. When it's more burny I'm slower mentally and have that overall general flu like feeling.
 

cfs since 1998

Senior Member
Messages
744
Yes, I've never taken an SSRI but it seems like almost anything and everything makes my SFN worse. I think it is the drug hypersensitivity that many ME/CFS patients experience. I don't know the root cause though. Seems like taking nothing is best.

How long were you on IVIG and how long have you had SFN? Was it confirmed with skin biopsy?
 
Messages
97
I think it's possible for nearly anything to worsen ME symptoms, and symptoms from other diseases. We're all different, and our various biological processes are interconnected with many more, so what works well for one person might have the opposite effect for someone else.

Dealing with ME seems to be a process of learning what makes you feel better or worse. If X makes you feel worse, avoid it, regardless of what effect it's supposed to have on other, mostly healthy people.
I have always had issues with depression and anxiety before I got sick I took several antidepressants beta blockers without any problems. also they helped me about social phobia anxiety etc. now things have changed they cause different problems like I mentioned. you are right I will give it a go for another two weeks since it is only week two to see if things settle otherwise I quit.
 
Messages
97
Yes, I've never taken an SSRI but it seems like almost anything and everything makes my SFN worse. I think it is the drug hypersensitivity that many ME/CFS patients experience. I don't know the root cause though. Seems like taking nothing is best.

How long were you on IVIG and how long have you had SFN? Was it confirmed with skin biopsy?
I only took one round of loading IVIG dose. do not remember exact dose I stayed in hospital for 5 days. I remember you thank for your contributions to my posts. we have discussed it on another post that I shared my experiences. I will dm it again to remind you. and yes it was confirmed with skin biopsy low fiber density found.

it is like a continuous loop for me untreated sfn without no root cause result in depression and depression make sfn worse.

taking nothing seems best but I have to. to work to live. if I am not sick I would never ever touch any drugs or supplements. in our cases we better find the useful ones.
I took ldn also it made burning worse which also suggested for sfn. even probiotics cause same issues.
 

JadeD

Senior Member
Messages
172
Location
UK
are there any other medications than ssris?

I was going to try agomelatine which doesn’t work on serotonin as much to help with sleep also but you need regular liver function tests. But I’m trying to focus on treating my SFN at the moment as that’s the worse symptoms for me personally.
 
Messages
97
I was going to try agomelatine which doesn’t work on serotonin as much to help with sleep also but you need regular liver function tests. But I’m trying to focus on treating my SFN at the moment as that’s the worse symptoms for me personally.
what do you do to treat yours? does it have a root cause?
 
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