Need Help..peripheral neuropathy, chronic widespread pain and weakness

I would definately see what the Mayo docs have to say. Its seems like you have nothing to lose. Good luck!

a second opinion can't hurt if you presently have no relief from pain and your on all those drugs.

I also suffer from periferal neuropathy and symptoms you speak of. I have been to a number of drs. And now with one in Albany, ny. What a frustration!! My five minute appointment with my specialist left me more confused. No dialog, no concern and the next step is lidocaine treatments via Iv. So I have contacted the periferal neuropathy ago animation. If you would like I,ll update you. Good luck, I know what you are going through. I use to hike, bike , kayak and more. Last year had to stop. I have set a goal to get better for this summer and make up for last.

I suffer from idiopathic neuropathy, I had a knee replacement done 6-7-22. I have been having problems with muscle spasms as well as the neuropathy to the point I am unable to handle the pain! The surgeon had started me on Tramvdol and a muscle relaxer Diazipam. This was not covering the muscle spasms at all so he xhanged me to Flexeril. Since starting Flexeril my idiopathic neuropathy has spiked to uncontrollable levels. The Dr. has not altered his course and I am in misery with my feet burning as well as the muscle discomfort. I have only gotten 4 hours sleep in the past three nights! Help! Has anyone had these problems? Is the Flexeril causing the issues? I am using the prescribed drug for pain ( tramadol ) this does not at all cover my discomfort! Beginning to have very depressive thoughts. Any ideas from anyone. I am typing this at 3 am in the morn as I cannot get rest! I am unable to take Ambien, as well as Klonopin which I took prior to surgery as they don’t mix with the meds Dr. prescribed! Any help would be helpful, I cannot handle this anymore! Life with this kind of pain isn’t worth continuing!

@bill5
Have you tried the anticonvulsant Gabapentin. It's probably the most prescribed medication for Neuropathy. The recommended dose for Neuropathy is 1800-3600 mg a day. Some get relief on less some more. I knew someone taking 7000 mg. It can cause tiredness, dizziness, and memory and balance issues. It didn't help my seizures or Neuropathy but helps my brother. As for side effects, if any, they often decrease over time. Opioids may help you also. I took fentanyl for other problems that did help.
Good luck,
Jake

So very sorry this is happening , I know the feeling when you keep trying to help yourself and nothing seems to work. I agree with Bill below, I take Gabapentin ( 2800 ) and Hydrocodone for small fiber neuropathy’s . It at least takes the edge off and I can sleep. I do use half of a Xanax when I cannot sleep. Hoping this helps you .

Welcome @leigh17, Thanks for sharing what helps you. It sounds like you also have peripheral neuropathy. Do you mind sharing your diagnosis and most bothersome symptoms? Have you done any research on other available treatments?

Hello— I has your same dark thoughts about life after my severe polyneuropathy hit last year after surgery and a couple of unrelated infections left me unable to walk, and with a dropped left foot. Gabapentin has been a help for pain, and so has Telehealth family therapy for my husband and me, along with antidepressant medication, which I initially resisted. I have a group of Zoom friends working on spirituality I get on with daily to start my day.
There is also a monthly meeting of the Foundation for Peripheral Neuropathy on Zoom, and they have a Facebook Group. You are not alone in the physical and paychic agony that neuropathy brings into our lives, and for whatever comfort it may offer, you are not alone. Keep writing.

PS to Bill5–That should read “I had” the same dark thoughts. . .
Intravenous immunoglobulin also has helped with pain, strength and range of motion. EFGH 1020

Hi John, I have had 4 spinal fusions over the last 12 years and have chronic pain from 2 of those surgeries. But I the last 3-4 months I have developed small nerve neuropathy in my legs and it’s extremely painful at times. I am undergoing blood test for autoimmune diseases right now and also having a CAT scan of my chest tomorrow. The medications that I’m taking are helpful but they certainly don’t take the pain away. I also have four compression fractures in my thoracic spine recently had a kyphoplasty and then they intercostal nerve block which seems to backfired. I am 67 and was very active and athletic .