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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: 5 days ago | Replies (2916)Comment receiving replies
Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose.. Came on after a broken ankle surgery..
Orthopedist thought it was nerve damage from surgery, but spread to opposite foot leg and hands. Had surgery, spinal taps, cat scans, mris, electrical studies. Finally diagnosed at Cornell Weil in manhattan. Was in a wheelchair by then. Was put on intravenous Ivig immunoglobulins every 2 weeks for 2 yrs. lost all motor and sensory in lower legs feet, and hands. I can walk again after much PT, immunoglobulin Iv and time to re myelinated the peripheral nerves. I was a health practitioner 25 yrs prior to my ankle fracture. Now, I can't work at all. My life has become confined and depressing.
My mom, why taking care of me had a major stroke. I tried gaba, neuron tin, lyrica, cbd oil, medical marijuana, now legal in New York but very expensive in liquid form. None of it has done much to decrease the constant tingling, burning, tightness, spasms,numbness. Has anyone tried the supplements with the b vitamins, alpha lipoid acid, turmeric, scull cap, omega 3 ? Has anyone tried ,laser treatments, acupuncture, anything?
Does anyone have a comfortable shoe or slipper? I tried at least 20 shoes. Lems are the only brand I can wear and not have to cut up.
I guess this is all.....my neurologists are pleased that I can walk again, and I will continue the immunoglobulin I've, but my quality of life
Is slim to none. Can't go anywhere without counting the minutes until I can take my shoes off. I am open to any suggestions, will go any where in the world for relief. Thank you
Replies to "Yes, have auto immune neuropathy cidp. Hands and feet unbearable pain. Took very long to diagnose....."
You have been through a lot. I'm sorry for your pain.
Here are some things that help me. I have cidp and sfn. I try to keep to a gluten free diet, no processed food, sugar dairy or alcohol. CBD ointment in 70 CBD to 30 thc ratio helps with night pain. Plain CBD ointment 250 mg helps during the day as does a lidocaine patch 5% on an area with severe pain. I take sublingunal victims B12 along with 2 tsp turmeric in green smoothies per day. None of first tier drugs like Lyrica work for me but I get some relief. from Ivig treatments 2 days a month. My foot pain has decreased because of a good diet and exercise.
Hi Pammy, I have chemo induced peripheral neuropathy and diabetes 2 from the steroids during cancer treatment, along with a couple of other reminders.Congratullation on persevering to be able to walk again! 👍. My daughter- in-law recommended the LEMS shoes this summer, and they have been a blessing. Although I Must use a trekking pole or a rollator for balance, I’m able to walk with some measure of comfort. I’ve read that Xeno shoes are much like the Lems with a wider toe box and zero drop. I’m allowed 1 pair of diabetic shoes a year (with Medicare paying 80%) and I’ve had good luck with the Dr Comfort brand. You don’t have to be diabetic to buy them.
I have read quite a bit about “The Protocol” on the small fiber neuropathy Facebook group but haven’t tried it yet. I understand that it usually takes a while to take effect if it does help, so I’m weighing the cost against the possible benefits. I’ll post to Connect if I find that it does help. I hope you’re in a location to enjoy the lovely fall weather. We’ve already had a light snow, but Mother Nature is teasing with a couple of fall like temperatures every 10 days or so. I really treasure those days as I can be outside more safely. Once winter settles in here in MN, I will lose much of my mobility to leave the house 🏡 until April or May. Wishing you the best ...
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Hi @pammy922, welcome to Connect. It sounds like you have a lot on your plate to deal with but I can tell you that you are not alone. I think we've all tried a multitude of shoes. I found the ones I like were Sketchers slip-ons but they do not offer much side support so I have to be careful using them for balance problems. I also struggled with socks and found that bamboo thread socks were really soft, comfortable and very easy to put on and take off.
I take over the counter supplements that I found in a closed group on Facebook that helps me and has also helped others that were in a lot of pain with their neuropathy. It may or may not work for you but it's worth a try if nothing else has provided relief. I have links to the group in an earlier post where I shared my neuropathy story here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@artscaping and @jenniferhunter have shared some great information on dealing with pain in many of their posts. I'm hoping they might have some suggestions for you.
@pammy922 it sounds like you have made significant progress being able to walk again. What is the biggest thing that would help improve your quality of life?