Idiopathic Small Fiber Neuropathy Research

Just finishing a dorsal root ganglion stimulator trial. The stimulator is from Abbott. This is my 6th day of the trial. They want a 50% improvement in pain before they will implant it permanently. As of today, I consider the trial to be a failure. I also did a trial of a spinal cord stimulator from Abbott using Burst technology back in the early Fall of 2021. It was also a failure.

Why do some patients get relief and others do not with stimulators is a question that they don’t have an answer to. Medicare paid for both stimulator trials but they won’t pay for another one. The only option I have left is medical marijuana when it should be available in my state late this year or early next year.

As far as my research goes, there doesn’t appear to be any product out there coming to market anytime soon for neuropathy. Oh they do plenty of clinical trials researching neuropathy but nothing in terms of new drugs every comes out of the research.

Good afternoon @shitnyoung. I would like to add my welcome to that of @johnbishop. He has given you a good start with his response. I do have SFN and was diagnosed in 2017 also. And yes, it gets worse. When I think about how I felt in 2017 and how I feel now it is an amazing difference in severity. My SFN is trauma-related from injuries and orthopedic surgeries.

Today, I would like to see if I can help with the balls of your feet. Yes, they can hurt unbelievably. Are you driving? If so, do your SFN feet interfere? Are you using any topical ointment? I started with a Lidocaine-based compound ordered by my neurologist. It helped and he was able to increase its potential by changing the formula. There are compounding pharmacies that create these rather individual and one-of-a-kind treatments.

However, after a while I needed more. That is when I was introduced to MFR.........myofascial relief therapy. I have my feet done twice a week now and that keeps them in a reasonably feel-good state.

I also changed my pain medication to medical cannabis and use a CBD/THC balm on my feet. And finally, I don't know if this is a biggie but I changed my daily shoes to Hokas. They give me a good foundation for walking. Standing for more than a few minutes is another situation and a hurdle I have not conquered.

Let's move to your ears. Do you have Tinnitus in your ears? Is the "burning" inside both of your ears? There are discussions going back and forth about neuropathy being responsible for ear pain. Now you may not believe this but I recently began to use hearing aids for the advancement of inadequate hearing. I was surprised to find that my Tinnitus and ear pain have diminished....not totally disappeared but making rare and less painful appearances.

If I could change these three words for you........."I'm absolutely miserable"......I would be there in a heartbeat. I know what miserable feels like and still feel that way at times. That is when I practice meditation and mindfulness. Have you ever considered learing about using those practices to improve your tolerance and resilience?

May you be free of suffering and the causes of suffering.
Chris

Thank you Chris for taking the time to reply back to my message. I thought maybe I was the only person with SFN that had the balls of my feet so painful to make walking nearly impossible. I thought maybe my mind in running away with this thing and could it be fibromyalgia on top of the SFN. It hurts to cross my legs (the muscles) in fact my major muscle groups ache something terrible with the least exercise. I live in a small town so taking advantage of some of these treatments is not available here. I do have tinnatis continually, my ears burn when I lay on a pillow like a norma person and I can only listen to earbuds for a short time before that becomes uncomfortable. Feels like I've got a bug crawling in my ear canal. I can still drive, but the burning of my thighs and buttocks is just a matter of endurance. How much I can ignore the pain. The facial massage, is it on the face? And that helps the feet? Thanks again

Shelton

Hi Shelton
Have you ever seen a Podiatrist regarding the pain in the balls of your feet? If not, you should. You may have a condition called meatarsalgia, which is unrelated to PN. It's treated with orthotics, NSAIDS, etc.
Just a thought.

Thanks Jeff I am pursuing that approach now. I come upon that condition while researching dorsal root ganglion and it made sense to me. So I intend to pursue both. I have nothing to lose but pain. Thank you and Chris for sharing with me out of your concerrn for someone you don't even know. God bless.

You're welcome! BTW, another condition that causes pain in the ball of the foot is neuroma.
Making a diagnosis is often difficult, especially when you are dealing with a disease like PN, which can mimic so many other conditions, and changes day by day, for no apparent reason.
This is one of the reasons to be sure to see a qualified physician to diagnose and treat medical problems. Unfortunately, there is no guarantee of a cure, but there is the potential for some relief.
Good luck!

Hi there Shelton. Thank you for your response. I want to clarify a couple of things. MFR is a hands-on therapy and it means Myofascial Massage Therapy. It is for the entire body including the face. However, in this case, I was referring to the feet. The actual process for feet is called bilateral leg and foot release followed by soft tissue mobilization of the plantar area. The therapist uses cross-fiber friction techniques. I happen to be fortunate enough to have two therapists at every session because of the severity of the SFN. So, one does the release placing my feet against her shoulders. The other one follows with the cross-fiber friction. If you would like more information you can find it at https:connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr--for-treating-compression-and-pain/

If you feel you want to pursue MFR you can go to "Find a Therapist" on myofascial .com OR you can let me know where you live and I will find you a therapist to contact if there happens to be one in your neighborhood.
Do you think it is worth a try?
May you have happiness and the causes of happiness.
Chris

trying to get linked up with a good podiatrist now. Thanks for your help.

I’m new to this diagnosis, about 13 months. The pain is increasing as is my dosage of gabapentin! I’m not finding much encouragement reading this sight regarding treatment nor research. I’m going to naively ask has anyone found any relief from a diet? I’ve completely stopped drinking alcohol, 10 months even though this wasn’t an issue. I’m a celiac / hypothyroidism gal tested positive by skin graft.

Also are any of you having gastric issues?

Thanks!

I'm new to this group; have had PN for at least 15 years; started abruptly one day with toes being numb; then it progressed so that now, both feet are numb. Thankfully, I don't have pain, but it feels like I walk around on sponges. I have been using frankincense and myrrh oil, massaging it into my feet each night for about 2 months now. I think MAYBE there is some relief going on. Has anyone else every tried it?