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Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: May 17 2:03pm | Replies (284)Comment receiving replies
Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are starting to get involved. Have an appointment with neuromuscular specialist June 5 and want to ask about IVIG infusions.
I have Hashimoto's and ITP but still am told that my SFN is idiopathic. I have ulnar nerve damage and carpal tunnel, have revision surgery next month to repair.
My SFN symptoms are worsening and now are above knee and elbows. GI has been involved since the beginning, very low blood pressure, and now migraines. I have tried all sorts of medicines and nothing has worked. I give up on doctors and tell myself I have to accept and live with this horrible pain but I end up going back with hopes to get help. If something has worked for any of you, please share, at this point I'm willing to try anything. 😔
Replies to "Been living with this monster for almost 20 yrs. Has been rapidly progressing, large nerves are..."
I have neuropathy which affects my legs and feet. Dr. Hasn’t been able to identify the cause yet. It was so unbearable especially at night. My Pain Dr. suggested a spinal cord stimulator. At first I was skeptical and kept putting it off until I felt like I had no choice but to at least try it. I went through the trial period and it did seem to help so I decided to have the permanent one implanted 3 weeks ago today. I can honestly tell you that it was the best decision that I have ever made! The neuropathy is at least 95% improved. I have the Boston Scientific stimulator. It is worth trying the trial to see if it gives you ralief. I hope you find something that helps you.
Hello @veronica2000, I moved your discussion and merged it into an existing discussion titled, "Small Fiber Neuropathy: What helps?" - https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.
It is a bit of lengthy discussion, but has many great posts about how other members are living with and managing their small fiber neuropathy.
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I’m living with this monster for 12 years, and honestly there’s nothing so far that I can say helped me.
Been on all the meds like Gabapentin, etc, with no relief.
Now only ed that takes the edge off my terrible pain in my feet is Tramadol.
Had IVIG infusions for 8 months with no relief from them either.
Just had an appt with a new neurologist in another state,probably my 7 th one.
I’m hoping maybe he will be able to help me.
Sorry I can’t help you.