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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years we have seen every specialty of physicians that we can see. Some of the tests, etc tried are: EMG(needle in the legs), MRI, Blood tests of every kind, Tens machine, a trial for spinal stimulator, very large dosage of Vitamin B-12 injections for several months, My partner does no not have diabetes. He was treated by a chiropractic doctor and a homeopathic doctor with trial of multiple vitamins and minerals. He has tried physical therapy, He has seen two different pain management doctors in two different groups of doctors. He even tried a foot doctor. He hurts so badly that he does suffer from depression at times because of the pain. He never gets any relief. How does one suffer acute pain day and night for years? He has tried neurontin, Lyrica, and cymbalta with no relief. He had a very bad time with cymbalta. It was so difficult to stop taking cymbalta and he had brain sparks from that drug for months after he stopped taking it. We live in the Jackson Mississippi area and most of the doctors in our area just have no answers for us. I think that they fail to help patients so often that they have given up. We are in process of trying to decide if we should try the Mayo Clinic in Florida. We have no other doctor to help us in our area. Both feet are numb with acute pain. He can not wear any shoe that touches his toes. He wears sandals with socks year round. HIs hands are starting to be numb but no pain there yet. Is there anyone out there who has this acute "hopeless" problem? Has any physician helped you to find relief?
Replies to "I am a caregiver. My partner has idiopathic neuropathy. In the past 3 to 4 years..."
I fully relate to your partner's condition. I have idiopathic peripheral neuropathy, with numbness, pins and needles, and burning pain in my feet, and some numbness in my hands, and the neuropathy is also causing urinary and sexual problems. I've seen several neurologists, a pain specialist and my pcp. I've gone through the whole list of neuropathy meds,both those that are specific to neuropathy, and off label ones, with no effect. I've been taking Morphine sulfate contin, in addition to the other meds, with minimal pain relief. 4 weeks ago, I had a spinal cord stimulator implant, and starting last Saturday, I had significant pain relief. I still have some pain, but it's so good for my feet not to hurt so much all the time. It won't do anything for the other issues, but it's a start.
Depression took over my life in 2004, and when the neuropathy pain started, it really impacted the depression. In '05 & '06, I attempted suicide a number of times, and had to retire on disability. There was no way I could function in my vocation as a minister. I'm still working with a therapist, 11 years later, and thoughts of suicide are pretty much a daily challenge.
Chronic pain can be debilitating, and certainly affects our mood. I would recommend finding a pain psychologist. They can be a great help.
Many people have found Marijuana helps with chronic pain. It's legal here in Oregon, but too expensive to be a reasonable option for me. Maybe Medicare will one day decide that it's a safe, legitimate alternative to opioids and everything else that's out there.
I hope he finds something that helps soon. He's fortunate to have a caring caregiver. We all have a need for love, especially for love that is active, not just passive or romantic.
Jim
I feel your pain...no pun intended...I have your pain. I ended up seeing a rheumatologist at Mayo Scottsdale for my issues. As many find it is a trial and error process for pain management. I've tried so many I don't believe there are any left. As it stands, I take 9 gabapentin and one cymbalta capsule a day. I seem to do fine with cymbalta. I take it in the morning to get the full effect. However, my neuropathy pain is so severe I also apply a fentanyl patch of 50mcg/hr every 2-3 days. I cannot function without the patch. Towards the end of the life of a patch, my pain is almost unbearable. Depending on the level of my activity, the pain can return just after 2 days. But my prescription only allows me one every 3 days. So, I have to either go without or stretch some out to 4 days when I'm not so active. I can't get anymore than 30 patches in a 90 day prescription because of insurance. If I do it's $1100 more!! I believe it will only get tougher for doctors to prescribe any kind of opioid pain meds. I pray my patches aren't going to be effected by the new regulations by the Feds. I hope this will lead you on to some answers to your questions and eventually to some relief.
Connect
Hello @ealanddtc - welcome to Mayo Connect. I'm glad you found us! I can empathize with your partner. I've been struggling with idiopathic small fiber peripheral neuropathy (SFPN) for 20+ years. The only saving grace for me is that I only have the numbness and not the pain. I do know there are no medications that will fix the problem with the numbness. They all just block the pain signals to the brain (my words - I'm not a medical professional and have no training!). I also have spent a lot of money on the different snake oils offered to fix it to no avail. There is hope though. I can share what works for me and has taken away some of the numbness or at least stopped the progression up my legs. Here is the bookmark to my "story" that is earlier in this discussion.
https://connect.mayoclinic.org/comment/36103/bookmark/?ajax_hook=action&_wpnonce=b6c96fff56
I'm hoping others will jump in and share what works for them also.
Thank you for being your partner's advocate. It can be a depressing thing if you let it get you down. You just have to stay positive and keep taking one day at a time.
John