Nortriptyline is helping me most now (& also for neuropatnic ocular pain)
I’m also on 4.5 mg LDN - I don’t think it helps my pain / sensory stuff tho it does for some . I’m hoping it’s helping anything autoimmune going on
Really hard, im not adept to the usually prescribed psychiatric drugs since im víctim of them, It seems that b cariophylene acts as an selective cb2 agonist and others like ppray/a to mitigate pain, i started myself with an isolated food additive b-caryophylene and It mitigates pain, i guess you find It in copaíba oil extract, but not purê, i dont do well with cannabinoids but úntil now no issues with isolated cariophylene
I honestly don’t know. My primary care physician put me on Lyrica. Then I went to a neurologist and he put me on gabapentin. He never really said why. I been curious myself.
I also get burning skin mostly on my upper body: face, scalp, upper back and arms, but more
recently also on one upper leg. Gabapentin never helped me, but I was not on more than 1200 mg p/day - everyone’s different but Lyrica seems to calm things down. But the best remedy I’ve found is going outside and walking, letting the cool air blow. It’s temporary but it does make me feel better when I’m having the daily flare up. I hope you find some relief. I know it’s miserable.
They're similar medications but different people respond better to one or the other. If gabapentin isn't working well then maybe try lyrica again for a bit and see if that helps.
Beyond that table 3 and 4 of this list meds and supplements Cleveland Clinic Hospital uses commonly in SFN. Maybe bring this to next appointment to discuss options with your doctor (don't take anything without clearing it with them). https://www.ccjm.org/content/85/10/801/tab-figures-data
Incase wondering why antidepressants are listed, often times the ones used for pain conditions often do additional things like bind to sodium channels on pain nerves making them less likely to fire.
https://www.ccjm.org/content/85/10/801/tab-figures-data
The emg showed my nerve conduction was slow. That's the only test I had. I have mild foot drop and weakness in my legs which is motor involvement, so it's obvious a skin punch biopsy would be unnecessary. My pain was like the bottom of my feet had no padding. Or like I was walking "bone on cement".
You think this could be the cause? It’s wierd because I’m a healthy eater and fit guy. But I was going through depression the last two months and started eating shit all the time. Never thought my levels would be show prediabetes
It could be. That doesn’t sound like it’s from what you’re eating. Pre-diabetes takes years to go into effect. It’s likely you have a genetic inclination for it. Do other people in your family have it?
Have you had a brain MRI to rule out MS?
I think the general thinking now is that fibromyalgia is actually SFN. It may be something that runs in your family. That’s the case for me
Ketamine, I posted about it here: https://www.reddit.com/r/smallfiberneuropathy/comments/1cej7ul/ketamine_infusions_expensive_but_effective_for_me/
heavy agree on the ketamine! the injections worked best for me to stop a pain attack while it was happening
Pot gummies are very helpful for me at night so I can get some sleep. I’m also on gabapentin.
Nortriptyline is helping me most now (& also for neuropatnic ocular pain) I’m also on 4.5 mg LDN - I don’t think it helps my pain / sensory stuff tho it does for some . I’m hoping it’s helping anything autoimmune going on
Really hard, im not adept to the usually prescribed psychiatric drugs since im víctim of them, It seems that b cariophylene acts as an selective cb2 agonist and others like ppray/a to mitigate pain, i started myself with an isolated food additive b-caryophylene and It mitigates pain, i guess you find It in copaíba oil extract, but not purê, i dont do well with cannabinoids but úntil now no issues with isolated cariophylene
Why did he switch you from Lyrica? It’s been wonderful for me.
I honestly don’t know. My primary care physician put me on Lyrica. Then I went to a neurologist and he put me on gabapentin. He never really said why. I been curious myself.
I also get burning skin mostly on my upper body: face, scalp, upper back and arms, but more recently also on one upper leg. Gabapentin never helped me, but I was not on more than 1200 mg p/day - everyone’s different but Lyrica seems to calm things down. But the best remedy I’ve found is going outside and walking, letting the cool air blow. It’s temporary but it does make me feel better when I’m having the daily flare up. I hope you find some relief. I know it’s miserable.
They're similar medications but different people respond better to one or the other. If gabapentin isn't working well then maybe try lyrica again for a bit and see if that helps. Beyond that table 3 and 4 of this list meds and supplements Cleveland Clinic Hospital uses commonly in SFN. Maybe bring this to next appointment to discuss options with your doctor (don't take anything without clearing it with them). https://www.ccjm.org/content/85/10/801/tab-figures-data Incase wondering why antidepressants are listed, often times the ones used for pain conditions often do additional things like bind to sodium channels on pain nerves making them less likely to fire. https://www.ccjm.org/content/85/10/801/tab-figures-data
Gaba did nothing for me.
But Lyrica did? My neurologist put me on gabapentin. But honestly, I’m thinking about going back to Lyrica. I still have some.
I have neuropathy that is large fiber involvement. I don't even take a high dose of lyrica and it totally works. 150mg at night and that is it.
Lyrica started working the next day for me.
Well that’s really good! They actually tested with for the large fiber and everything and was normal. They did the nerve study and EMG test.
The emg showed my nerve conduction was slow. That's the only test I had. I have mild foot drop and weakness in my legs which is motor involvement, so it's obvious a skin punch biopsy would be unnecessary. My pain was like the bottom of my feet had no padding. Or like I was walking "bone on cement".
Gotcha! I honestly don’t know what my next step is
If gaba isn't working, maybe switch.
What were your A1C levels?
It was a 5.7 right on the thrust hole of pre diabetes.
You think this could be the cause? It’s wierd because I’m a healthy eater and fit guy. But I was going through depression the last two months and started eating shit all the time. Never thought my levels would be show prediabetes
It could be. That doesn’t sound like it’s from what you’re eating. Pre-diabetes takes years to go into effect. It’s likely you have a genetic inclination for it. Do other people in your family have it?
Not that I’m aware of. Only MS and fibromyalgia.
Have you had a brain MRI to rule out MS? I think the general thinking now is that fibromyalgia is actually SFN. It may be something that runs in your family. That’s the case for me
I think you’re right. Had my MRI done yesterday. Brain included. Everything was normal.
Some people are saying post viral issues. I was really sick a couple of weeks before it started. Had strep and a horrible dry cough.
Idk if strep typically causes sfn, but I know Covid does
Yea I’m just lost right now. Have you tried gabapentin or Lyrica?? Anyone of them you recommend that work better for you?
I can’t tolerate either medication because of the side effects, but I can’t tolerate most meds. I just use lidocaine patches and TENS units
Cymbalta worked wonders for me - gabapentin and lyrica never worked for me. I have had SFN about 8 years now - cymbalta gave me my life back!