Ideas for pain relief from Small Fiber Neuropathy (SFN)

Here is a good one...

My 15 year old son, who has idiopathic SFN, tried LDN for about 5 months. He started at a very low dose and the max was 4.5mg. He unfortunately did not get any relief from LDN and discontinued it. It was made at a compounding pharmacy. Like any treatment, I’m sure someone will get good results from it and if you’re in our situation where nothing has brought him any kind of pain relief yet, it’s always worth trying if your doctor thinks it’s a good idea.

First off, I'm very sorry to hear your son was diagnosed with SFN. That is so unfair and my heart goes out to both him and you. I'm hoping he is unaffected by many of the possible side effects and that his youth makes him more resilient to handling it. Thanks for the advice. Be well.
Rachel

@katec

I'm fortunate not having sfn hit me until I was 60 something. Having it as a teenager is pretty tough. How does it affect your son? Has he been able to find any helpful treatment?

I learned that I had pn 5 or 6 years after I realized that I had major depression. Adding chronic intractable pain to that has complicated my life. Pain and depression feed off each other. I've been blessed to have some excellent health professionals who have treated both the physical pain and the mental pain. I've also been encouraged by the members of this group.

Welcome to Connect. There's a lot of good support here, as well as a lot of good information. I hope you find some helpful ideas for treating your son's neuropathy.

Jim

Thanks so much for your kind words.

So far his SFN only affects his feet. He has severe pain on the bottom of both feet and it’s worse weight bearing but they hurt ALL the time. It’s been hard watching him go from a kid who never sat down and played soccer 5 days a week to someone who can’t even walk around the supermarket without being in tears from the pain....certainly not what we expected his teenage years to be like.

We have tried so many medications, therapies, supplements, elimination diets, footwear, etc and not a single thing has even eased his pain in the slightest. His pain is worse everyday. We are lucky to have a caring knowledgeable doctor, and even though she’s in Boston and we are in Texas she keeps close tabs on him, but she even admitted the other day she isn’t sure how to proceed with his treatment and will have to take with the “other experts” to get their opinions. So far his testing shows nothing out of the ordinary so he’s labeled as idiopathic so the direction of treatment is unknown.

I’m hoping some other people here have had some success finding some pain relief that we haven’t thought of yet! Thanks for any and all advice!

@katec

I know just what you're saying. I've seen neurologists, neuro specialists at a university hospital, a pain specialist, a pain therapist and my PCP. I'm blessed to have a PCP who is happy to refer me to specialists.

Have you considered a spinal cord stimulator implant? I had one put in in June of 2017. It reduced my pain by more than 75%. I've learned that everything I've tried gives me only temporary relief. I know that the stimulator is still helping with my pain, but not as much as it did the first year. After that, the pain got worse, and the company rep adjusted the settings, and since then, I have to have it adjusted every 3 months. Each time it gives me pain relief, but gradually the pain gets worse and the rep changes the settings. It's pretty much a 3 month cycle. It's helped me enough that I'm willing to recommend it to others.

Maybe you've already heard all of this. I think that the Burst DR stimulator is probably the best - that's what mine is.

The burning pain was only in the bottom of my feet, in the ball of my feet. Now it's in the top of my feet, as well. Walking, especially on hard surfaces, is very painful, but even on good days, when I lie down in bed, the pain kicks in with a vengeance.

My taste in shoes has changed. Now I look for shoes with a wider toe bed, and roomy enough to put in some gel insoles. If necessary I buy shoes a size larger than my size 13 feet. I especially like the Air Plus industrial work insoles. They're less than $9.00 at Walmart. The shoes I've started collecting are Clark's, but I'm still picky, even with the Clark's label. I found a pair of Nike's that are comfortable enough for working around our place.

I have a good pain specialist who has gone down a long list of medications, trying to find one that helps. Last month, he had me start Imipramine, and it's really helped a lot. The only other medication that helped was Lyrica, but I had a bad reaction to it that put me in the hospital for a few days. I've also taken morphine sulfate contin for several years, and it takes the edge off the pain, but it doesn't do the whole job. I tapered off it twice, and after a few weeks without it, my feet hurt much more, so I went back on the morphine.

I haven't tried CBD oil or medical marijuana, but a lot of people here in Connect have found it helpful.

Has your son tried topical cream of any kind? Do you have a pain specialist? Mine has been very helpful. The pain therapist I saw for 6 sessions showed me some useful techniques for dealing with the pain.

The neurologist at the university hospital confirmed my diagnosis of small fiber idiopathic peripheral neuropathy, and noted the beginning of autonomic neuropathy.

Finding a treatment for the symptoms of neuropathy can be a long, frustrating process. It seems to be a matter of trial and error. I empathize with your son. I never experienced pain before that never stopped, and was bad enough to make me cry. I hope that you'll find something that will bring relief to your son.

Jim

Hello. Has your son received lidocaine infusions for pain? My Neurologist recommended I try and I have been receiving them weekly for over 4 months. Like any other treatment, it provides partial pain relief. Some days more than others. I have realized it's all about the percentages.
Rachel

Thanks for your input.
I also take Gabapentin, 1500 mg daily, and don’t really know I’d it’s working that well for me.
Past few days nerve pain unbearable in my feet and ankles.
Just seems to come on suddenly, mostly in evening.
I take Ibuprofen round the clock, but I’m thinking of starting Evening Primrose Oil after reading your post.
I’ll try anything at this point.
Marilyn M