Living with Neuropathy - Welcome to the group

Hi I have neuropathy and doctor is looking for cause. My ANA blood work came back positive for possible autoimmune disease and I will be seeing a rheumatologist. How does a rheumatologist check for an autoimmune disease? All I know is that I am in pain everywhere and need some answers. I am not diabetic.

If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

I also was on Gabapentin but because of fall issues have switched me to cymbalta. Has any one had good luck with that?

@summertime4 -- Here are some of the common lab tests done by a rheumatologist.

Common Lab Tests Ordered by Rheumatologists
-- https://arapc.com/what-is-rheumatology/common-lab-tests/

I have polymyalgia rheumatica (PMR) which is currently in remission. When it is active, I hurt all over and it's very difficult to walk or move around. My PMR was diagnosed by a Erythrocyte Sedimentation Rate (ESR or sed rate) test and a physical examination by a rheumatologist. PMR is not the only health condition that shares the hurt all over symptoms though.

Can you tell me what CBD oil brand and strength you use. thanks, I need some relief.

Thank you gone fishin2743 I believe you are right I had been doing water therapy before diagnosed with neuropathy. Then diagnosed with lymphedema and went to lyphedema therapy. Messed my program all up and now does not think I have lymphedema. I too have my marijuana card and use oil and gummies. Sometimes helps. I thought if they find a reason for the neuroathy they could treat that condition and it would hel. I just don't know anything any more except pain and disappointment.

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

I am so sorry you are going through this. i don't get my CBD over the counter. I have a grower in the family who makes it for me. I don't even know what the strength is. I wish I could be of more help.

Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.

Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.