For Those Of You With Small Fiber Neuropathy Pain

[janiedelite]

The topic title says it all. I've tried Lyrica and Neurontin but couldn't tolerate the side effects. I've been trying alpha lipoic acid 600mg daily but it doesn't seem to help. My hubby and I are currently trying to conceive, so I can't take other nerve meds right now (like lidocaine patches, ketamine patches or MAOI's like amitryptiline). We have one little dehumidifier/AC unit and last summer I lived in that one room. We moved our bed into it and everything. I'd drape cool washcloths over by burning feet, hands, and face and prop my feet in front of fans. Some days were so bad I couldn't tolerate clothing except for undies (which was fine since I rarely went anywhere anyway). Summer is such an isolating season for me. How do you folks manage?

I'm probably going to invest in a good cooling vest... do you small fiber folks find that it helps at all with the burning pain???

Thanks, Janie

[Heiferly]

I can't stand to have anything touching my skin at all when I get the prickle burn in my skin, so I haven't tried a cooling vest.

As a side-note, amitriptyline isn't an MAOI ... I think it's a tricyclic antidepressant. I didn't know it could help for neuropathy. Have you tried it? Did it work?

[janiedelite]

Thanks, Heiferly, for the correction! I understand about not having anything touching your chest. Are you able to wear compression hose? I wasn't able to wear them through last summer, until November when the cool weather really set in. The crawling sensation is particularly irritating today, and I wish I could take them off but I'm going to try to tolerate them for as long as possible. It's so hard because we pool more in the heat, but I have more burning and skin sensitivity in the heat which prevents me from wearing compression and I'm even more debilitated.

No, I haven't tried any tricyclics. Once we're done trying to conceive, either a tricyclic or mestinon will be next on my list to try. My neuro specializes in small-fiber neuropathy pain and suggested amitryptiline next. My husband went on nortryptiline for 2 months when he had a lot of back pain from a car accident and was weaning off Ultram/tramadol. It worked great for him, reducing his pinched nerve pains and helping with ultram withdrawal. For me, prevention seems to be the best treatment (avoid heat and stress and strenous activity) but nights are the worst for this burning so I take some vicodin if it's really painful. Benadryl sometimes helps, too, although lately I've been taking daily zyrtec and haven't noticed any benefit from that H1 blocker.

I haven't been able to sleep with sheets on the bed for over a year now because they hold in too much heat on my burning feet. I only use a very soft, light down comforter and my feet stick out from underneath. Either my hands and feet are ice cold or red hot. I also have constant burning in my mouth and throat like I just drank a scalding cup of coffee. Caffeine makes it worse too.

Someone recently posted about not being able to feel things that are hot, but to me anything that's slightly warm feels hot. I see you have hyperalgesia/allodynia also. I haven't been able to wear my wedding rings for over a year because of the hand pain, and often can't hold hands with my DH.

What have you tried?

[ajw4790]

Hi,

I have neuropathy pain, but not the kind you describe. But, I was wondering if you had tried Cymbalta? That can help some with nerve pain. I have been trying to think of other ideas, but you mentioned most I had within your posts, and otherwise I am drawing a blank...

Because what you describe sounds like RSD (I know techincally it isn't) but, I am wondering what else people with Reflex Sympathetic Dystrophy use that may help you? I know they often go to pain clinics and use a variety of treatments. They use anything from meds, relaxation/meditation techniques, to easten medicine (like acupuncture). I wonder if this route would help you in any way?

Hope that you are able to find something to help this summer! I am already dreading summer!

[janiedelite]

Hi ajw4055, I haven't tried Cymbalta. Good idea! I have tried accupuncture, gluten-free diet, herbal teas and other remedies with no success. I checked out a video from the library on deep breathing and relaxation/yoga. A lot of people with RSD seem to have problems in just one area of their bodies so they can get injections and other local treatments can be effective. I have burning in all of my skin, so a systemic treatment will probably be best. If I exhaust all the suggestions of my neurologist, I'll request to see a pain clinic doc.

Right now I'm trying to avoid meds, though. But I'm wondering how I'll get through the summer. I can take narcotics while we're trying to conceive, just in small doses. I don't like to do it, but it works. If it gets too bad, my neuro said we could try topical lidocaine for my most sensitive areas (like my feet).

My mom has had small fiber neuropathy for 4 years, since her carcinoid syndrome came out of remission.

Anyway, sounds like I'm doing what can be done... . I'm just going to try to make the best of things staying indoors this summer. You all can relate!

Thanks, Janie

[pat57]

How long were you on the Neurontin ? The side effects usual disappear after 3-7 days.

[janiedelite]

Hi Pat, I was on the neurontin for 2 weeks. I didn't mind the usual fuzzy-brain side effects. Unfortunately both Lyrica and Neuronting completely shut down my colon . I have an unusually slow small bowel and colon anyway, but even with taking colace and senna I was painfully stopped up. I got relief the day after I stopped taking the pills. I think I tried taking the Neurontin twice, the first time was for 3 weeks and the second time for 2 weeks. My doc lowered the dose but I wasn't getting much relief from it anyway so I quit. On the other hand, Lyrica helped my pain immensely (not just the burning skin pain but all my back pain as well). But I had the same problem as when I took the neurontin unfortunately.