Living with Neuropathy - Welcome to the group

Hello kindred spirits. My main health concerns are all severe: pain, anxiety, insomnia and isolation.

Health was great until early 40’s, ~30 years earlier. MECFS evolved, which is neurological from stress, significant, and progressive. It is systemic, affecting multiple brain functions including cognitive,IBS and insomnia. Then Peripheral Neuropathy severely hit in feet, it too is systemic and progressive with high pain. I think these conditions are interrelated, neurologically. I’m functional but slow, getting more and more housebound.

I’m more or less tuned into the CFSME but not so much the related conditions. I’d like to see what we share in common, dealing with the symptoms et al. ✌️

Hello @stress, Welcome to Connect. I think you are right in that a lot of the neurological conditions are tied together. I don't have ME/CFS but do have small fiber PN, polymalgia rheumatica, and am trying to figure out if I'm in the catagory of those with metabolic syndrome which I think is related to my neuropathy. Here's some information that I think speaks to neuropathy and ME/CFS.

Small Fiber Neuropathy (SFN) Fibromyalgia and ME/CFS Resource Page: https://www.healthrising.org/small-fiber-neuropathy-resource-page-fibromyalgia/

There are a few other discussions that you might find interesting.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Another connection I'm trying to understand which could possibly tie in with what you mentioned is the Metabolic Syndrome -- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Have you tried doing any research using PubMed (https://pubmed.ncbi.nlm.nih.gov/) or Google Scholar (https://scholar.google.com/)?

Hi John. I appreciate the great reference material. I’ll spend some time on each.

I have been a reluctant researcher on MECFS since ~1990, and joined several of the forums in that arena. My home office is stacked high with research journals and articles from several sources you referenced=/ Cort Johnson has done a terrific job in setting up phoenixrising.me forums and Health Rising.org/forums, the 2 largest and most actively involved.

When you say you’re studying the metabolic connection I’m wondering if you’re referring specifically to the digestive system involvement? If so, I am also interested in learning more about it and IBS. My ‘gut’ feeling (pun intended) is that there is some strong correlation. My gut problems recently began and it feels like it’s being affected by nerves
(related to the SFN)? I recently scanned a book ‘The Second Brain’ that espoused the stomach as having its own nervous system, in addition to producing over 90% of the body’s serotonin. Dr. Mike Gershon went on to claim that it, the stomach can therefore function independently of the brain! Pretty interesting stuff, seeding more interest… .

I look forward to learning of your related ideas and those of others. Many thanks.

Thanks @stress, I will try to remember to share updates if I learn anything new. It's a bit over my head now and a lot of reading and trying to understand how it could or might be applicable to me.

My neuropathy symptoms surfaced 6 months after intestinal surgery. I have always thought that was the cause but all of the doctors I've seen just ignore the connection. I also read "The Second Brain" plus other related books prior to the surgery.

It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed to severe pain ~3 years earlier. Now it’s going up my legs and maybe systemically? I can feel feel it’s ‘tightness’ it my gut and maybe all over.🤷‍♂️and I t’s pretty scary. I’m seeing a gastroenterologist for IBS tests, now. I wonder about yours, in gut or all over and what you feel? Are you distressed…and or how you might be controlling it?

Hi @stress, I was wondering if your post was directed to me or if for @retired123?

Sometimes it's hard to know who your post is for unless you click the REPLY button below a post which lets the person know that you are replying to their post on Connect. Another way to direct your post to a member is to use their member name like I did here with you. When you click the POST COMMENT button at the bottom of the page, it normally means you are asking a question of any member or providing information for everyone.

@johnbishop Oops, apparently I hit the wrong button when posting, sorry. Actually, I was responding to @retired123, but I’m always open to learning from anyone.

Mine started and is in my feet and ankles making them so tight walking is assisted/difficult and I no longer drive. It started with tingling in the feet progressing to where it is now. My lower legs tingle and have the sensation of being cold but if I touch the skin it is not cold. My surgery was for a part of my intestines that was trapped in scar tissue and being strangled. I found it interesting you mentioned IBS. I had that for about 20 years. After the surgery it is gone even though the surgery was not related to it. It makes me wonder if IBS primed my body for this waiting for the opportunity to activate. Since small fiber neuropathy can affect the smooth muscles I find some functions different from before. No pain. I'm taking supplements, exercising and trying whatever I can that might help me get back to walking and driving. All info and suggestions are welcome as I continue to educate myself on this and will hopefully find the cause to treat it. I'm taking Pregabalin for the symptoms but that is only partially helping. I'm dealing with the rest as I don't want to take a higher dosage or more Rx. I'm taking chocolate and potato chips to treat the soul. 🙂 I'm not diabetic or overweight. Just aging and that might be the cause! In any case, it stinks. 6 weeks before this started I was walking all over a cruise ship and Alaska. That was 2 1/2 years ago. I fear there is no short answer for any of us.

Hello, I’m new to this group. I am suffering and hope to learn how to deal with my conditions and make connections. Thank you and Happy Holidays to all.