Living with Neuropathy - Welcome to the group

It started about 2 years ago. Most difficult to deal with is not able to go anywhere. Been stuck at home for about 1 1/2 years now. Only time out is to see a doc.

@rajoy, You are right, it really does suck. The best thing each of us can do for ourselves is to learn as much as we can about our condition and what can help us live a better life with the symptoms we have. Although there is no real cure, there are many different treatments that can help provide some relief. The problem is finding something that helps you and what can help you there is to learn more about neuropathy and what treatments are available.

The Foundation for Peripheral Neuropathy is a great place to start your learning journey.
--- https://www.foundationforpn.org/living-well/

So sorry to hear no cause has been determined, Rich. In my case, I was fine until about two years ago. Woke up one morning with my feet feeling so heavy I could hardly move them. MRI ordered by PCP revealed stenosis in my lower back and I was referred for surgery. After seeing a number of ortho and neuro surgeons, I decided on an ortho spine specialist and had a laminectomy a year ago today. Immediately after surgery, the horrific pain in my hips and legs was gone. I could walk. But then I noticed the neuropathy in my feet, with numbness and tingling that had not been there before. Surgeon said IF the neuropathy improved it could take 12 to 18 months. A year later it is still about the same. It affects my balance and my endurance for walking. Tell me, please, what tests have the neuros had run on you? MRI? Nerve studies? EMG? Has anyone done blood tests to check vitamins/minerals levels? Have you been referred to Physical Therapy to see if it could help? And if you are in a city, have you checked to see if there might be any ongoing medical research studies you may qualify for? Obviously, I'm not a doctor. I'm just another patient like you. But I've learned through the years that we have to be our own advocates where our health is concerned. My ortho spine surgeon is not a neurologist, and he has given me Gabapentin, and then Lyrica, neither of which I was able to continue... and neither one helped. Last week, I saw a podiatrist, and she has just done a skin biopsy for SFN, and she has referred me to a neuro lab to have an EMG done in two weeks. My PCP has referred me to a neurologist, but two months later (and many phone calls) they still have not called me for an appointment. 🙁 My podiatrist immediately gave me a prescription for Metanx. I take it twice a day. I had never heard of it at all until I saw her. It will take several months to tell if it makes a difference. In the meantime, I will continue to research on my own. I hope you will do the same! Best wishes! Mike

Do PT twice a week. Did have a test. Not sure what it was. The Doc used equipment that gave me electrical shocks all up and down legs, arms and chest. Also a lot of blood work. Just waiting for answers. Also did have MRI, shied “minor stenosis” according to Doc. Not bad enough for surgery. This Doc doesn’t talk much. She did say I might have ALS, but not sure. Don’t really know what to do

My Neuropathy has gotten worse. In 2021 The pain doctor placed a spinal stimulator in my back. Also L3-4 and L45 a Minuteman Screw. Since then I no longer can walk without a walker, and that is only short distance before i have to sit down. Both legs from knee down to both feet are numb, cold, and very painful. The Doctor has me on Gabapentin 300 twice a day, Elavil 50mg at bedtime. And Celebrex 100mg twice a day. For Pain Tylenol 4 every 6hrs. The pain is so intense mostly at night. I can't get relief at all. I've tried lyrica no result. Nothing is working. Any suggestions would be appreciated.

Thanks
MB

Welcome @marytech46hh, I can't imagine how difficult it is for you having the intense pain at night with no relief and not being able to find something that helps. There is another discussion you might find helpful where members with similar symptoms are discussion pain management:
--- Anyone had a successful experience w/ Mayo Pain Rehabilitation Center?: https://connect.mayoclinic.org/discussion/has-anyone-successful-experience-with-mayo-pain-rehabilitation-center/.

Have you thought about or looked into a pain rehabilitation center?

I have balance issues all the time.
I feel like a weeble, can’t feel my feet, so I can’t grip what I’m standing on.
I use a cane or a walker now,when I’m out and about.
Can’t risk a fall or a break in my hip.

I have same symptoms as you describe, but I’ve been on your same meds along my neuropathy course, and nothing has helped me.
Tramadol gives me some relief, and Susan’s Salve which is a CBD ointment rubbed on my feet,takes the edge off most of the time.
Would like to have just one pain free evening sometime.

My name is Betty. I am 80 years old. I was diagnosed with Charcot Marie Tooth between 2000 and 2005, I take 2700 mg of Gabapentin daily. I did well following left shoulder replacement in 2021, but now both knees are bone on bone and very painful. I suspect I will be looking at replacement, but wonder if the muscles will be able to support the new knees. Has anyone else experienced this?

Welcome Betty @hulst43, I've had one knee replaced and the other one is bone on bone but so far isn't causing me any pain although my right leg with the knee replacement seems to be a little stronger. I think the key to knee replacements is faithfully doing the pre-surgery and post-surgery exercises to strengthen the leg muscles. I'm also 80 and have difficulty walking due to lower back issues but I do ride my exercise bike 4 or 5 days a week for at least 30 to 45 minutes a day. I also have a stand up rowing machine that I use for 10 to 15 minutes a day to help with the leg muscles.

There is another discussion that might be helpful started by @10nsmom who had a bilateral knee replacement.
--- Total Knee Replacement: https://connect.mayoclinic.org/discussion/total-knee-replacement-2/

Have you discussed the knee replacements with your doctor or surgeon to see if they have some suggestions for you?