Living with Neuropathy - Welcome to the group

I have several nerve related problems in my legs and feet and I don't know what is what. Years ago I had 2 biopsies done on my left leg that showed small fiber neuropathy. No treatment was offered. Next came a burning right foot that had had 3 surgeries, the second one was messed up, the third removed screws and plates that were too big for my foot and had caused a lot of pain, Four years after that I was dx with CRPS. The burning and pain was ridiculous as was the edema and shiny red skin. That moved to my left foot , left knee, and immediately after my second spinal cord stimulator was implanted, to my left butt due to being injured from being tossed around on the operating table called a Jackson table. That pain far outshown the surgery! So I would like to hear from someone who may just have severe sensorymotor polyneuropathy to help me sort out what is what.

Hi, @barbbie - You may notice I moved your discussion and combined it with another discussion titled, "Living with Neuropathy - Welcome to the group." I did this so many members on Connect discussing neuropathy would see your message and have a chance to add their thoughts. Hoping some of the members here, particularly those with sensorimotor polyneuropathy, will chime in with some support and help in sorting out what is what with the nerve-related problems in your legs and feet.

@barbbie - what pain or burning issues are plaguing you the most right now? Are these issues constant, or do they come and go?

My burning pain right now, which I think is CRPS, is in the ball of my right foot and the lower back of my numb neck. The foot pain moves around. My neck has been numb for a little over six weeks. My feet were red and swollen when I got up. My ankles were also filled with edema. I just saw a different osteopath who told me my whole nervous system appears to be hyperactive. That alone can cause a lot of weird things. Thanks for switching this over to the current category.

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Hi @barbbie, have you seen the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website? It has some good information on CRPS Treatment that might be helpful.
https://rsds.org/treatment/

Thanks for the referral. I learned some useful info.

Hi. My name is Carol. I am familiar with Mayo Clinic connect and known by summertime 4. However, Carol is my name and I have no problem sharing that.. I was recently diagnosed with idiopathic peripheral neuropathy. This diagnosis came about after a nerve conduction test with also the electrical shock. I have many of the classic symptoms which include awful pain in y left foot and toes. Of course numbness in both legs and an inability to walk without the risk of tripping. As for the idiopathic. I have not seen a doctor since this diagnosis so hopefully they will try to find a cause if there is one. I have been prescribed Gapapentin 600 mg for fibroyalgia so they may increase that. If anyone has any information they can share with me I would appreciate that. Thank you.

Carol again adding to above. I have significant swelling of my left foot and toes. I was told that sometimes Gapapentin can cause swelling. Has anyone experienced this from Gapapentin?

Hi Carol @summertime4, I also have nueropathy which has been diagnosed as idiopathic small fiber PN. I only have the numbness and no pain. I posted what helps me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also have a few other autoimmune conditions and have swelling mostly in my right leg which went on for quite awhile before I was diagnosed with lymphedema. The treatment for my diagnosis is the fun of wearing compression socks (knee high). Have you asked your doctor about the swelling in your left foot and toes?

I have no medical training or background but I wouldn't think the Gabapentin is responsible for the swelling. Here's a list of the side effects: https://www.rxlist.com/neurontin-side-effects-drug-center.htm#overview

@summertime4, Hi Carol, I am currently waiting for my EMG which is June 12th. I also have some type of neuropathy. I believe I had small fiber neuropathy for the past 15 years only I think it may have progressed to the large fiber, motor nerves. This is just my feeling after researching everything that I can. I know how frustrating it can be to hear that word “idiopathic”. My left foot is the worst as well with lots of pain and toe twitching, although I don’t have swelling but I have recently noticed some muscle atrophy in both feet. I can walk still, but not very much, just a little around the house mainly. I also have Fibromyalgia and I know that people with FM can get neuropathy. I take 600 mg. Gabapentin and 50 mg. of Amitriptyline. The combination helps me sleep which I am thankful for. You might ask for another medication to go along with the Gabapentin for pain relief. I hope that your doctors will look further into finding a cause for your neuropathy. I know how truly difficult it can be. Please take care. -Laura

Hi Carol, I have small fiber neuropathy in both feet with the numbness going upward nearing my knees. I also have, despite the numbness, a great deal of pain in both feet along with swelling of feet and ankles that has been dx as Complex Regional Pain Syndrome. I do not take any meds for it as I am allergic to just about everything! I do take diurectics and use lidocaine prolocaine cream along with lidoderm patches. I use a power chair around the house and a cane outside. I see pain management and have obtained relief for a short period of time. I also have a spinal cord stimulator implanted that is great for letting me do what I am able. It is tough when your feet hurt all the time. Haven't been able to learn how to walk on my hands yet. Keep talking and searching. It does one so much good as well as helping others.