Small Fiber Neuropathy
Are there any treatments available or trials for Small Fiber Neuropathy? My symptoms get worse every day. Thank you
Interested in more discussions like this? Go to the Neuropathy Support Group.
Are there any treatments available or trials for Small Fiber Neuropathy? My symptoms get worse every day. Thank you
Interested in more discussions like this? Go to the Neuropathy Support Group.
My first disappointment was with a Neurologist. My first three foot Doctors could not help. I found one that has knowledge bout PN, hurrah! With PN affecting so many parts of the body, you would think the "specialists" that we have so many of, would have some knowledge of PN or at least refer you to someone who who could help. My hand Doctor was the one who diagnosed me before my hands were involved! BTW, I use CBD from the Dispensary, and had to try MANY types and formulas to find the one that worked best. Also, for me, Hemp CBD is not as pain relieving! Exercise helps as well. Best wishes!
I am waiting for treatment for SFN as well. Each year I have something new. Each year I am in more pain. First was numbness so bad it turned to pain. Then, among bodily pain I had a period of mouth sores. I had a low grade fever for approximately 18 months. (99 degrees to 101.6 degrees). My legs got "heavier" and weaker each day. I went to physical therapy for several months that helped a little. I am allowed to have steroid infusions, but they don't seem to be helping anymore as well. I am on pain medication, but breakthrough pain in abdomen and right flank are excruciating. As I type this now, I have had a migraine, and all it's symptoms or nine days. I also have rib cage pain that will not end. My doctor tried to get me into IVIG therapy, but insurance does not like
SFN diagnosis and will not cover. Weeks like these, I struggle to get out of bed and just have a life.
Hi @trudi22, Welcome to Connect. I'm sorry to hear that your IVIG therapy was not allowed by your insurance for your diagnosis of SFN. It doesn't sound like IVIG infusions will help much with the pain for SFN according to this 2021 article -- Intravenous Immunoglobulin Therapy in Patients With Painful Idiopathic Small Fiber Neuropathy: https://n.neurology.org/content/96/20/e2534
You might find reading through the following discussion helpful - Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
The Foundation for Peripheral Neuropathy also has some different treatments listed here including some over the counter items that may provide some relief - https://www.foundationforpn.org/treatments/.
Also, if your doctor thinks the IVIG will help here are some tips you might find helpful to get the treatment -- Tips for When Your Medical Insurance Company Will Not Pay: https://www.verywellhealth.com/health-insurance-company-wont-pay-3231743
Have you contacted your insurance company directly or did they just tell the doctor it's not covered?
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4 ReactionsDuloxetine is also called Cymbalta. It is a prescription medication. It helps calm my anxiety which causes significant pain. And then the pain creates more anxiety.
Good luck.
Chris
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2 ReactionsHi @johnbishop I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. Now it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem. I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. How it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem.
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1 ReactionDo you feel with all these limitation your quality of life has been diminished?
I am 65 and I am worried I may end up in a wheel chair.
Yes, my quality of life has diminished as I can no longer play sports or travel like I used to. My wife and I used to spend our summers in Maine ( I still have a sister age 97 who lives in Maine) and we used to go on two or more cruises every year (Caribbean, Europe, Alaska, Hawaii, South Pacific, Central America, ***). I am 85 now and still get around town with a cane so enjoy what you like to do while you still can.
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2 ReactionsI agree....what can we do to decrease the PAIN?????
Madge
It’s prescription
From your psychiatrist