Crawling sensation all over body

@snowmass
I do get a cold nose at times but my hands did not swell. I get more numbness/pins and needles feeling in my fingers and do notice worsening symptoms if my neck is in certain positions or if I slept wrong the night before. Take a look at this cervical nerve map.

Is there anything that can be done about small fiber neuropathy? I do sometimes get burning sensation around throat, chest and stomach when these areas are stressed i notice. It’s so hard to find neurologist that will listen. I had two that i mentioned pulling sensation on the face and they prescribed me migraine meds. These are from cedar Sinai and UCLA networks…and another that blamed on stress…And they take so long to make appointments with….

How do you do it? I go thru so many ups and downs in daily basis even thought i try to be positive… very symptoms dependent…. I also am 53 professional…now having to face letting go of a lot of things in life… wondering if these are all permanent sometimes…especially when it comes to nerves…seems this field of med is not very developed as in muscles….

Neuropathy is strange. I have CIDP and 2 other autoimmune disorders, and I'm an infusion RN, administering the same meds that I take. I know the whole job thing is tough. I am always exhausted. I really could go on disability, but my family needs my income.

Hello @amandayounts14, Welcome to Connect. Thank you for sharing your experience with helping other patients. I can imagine that provides a lot of opportunity and insight into how the treatments work and the impact on the patients.

Neuropathy is definitely strange with so many different symptoms, causes and treatments. I don't have any real pain with my neuropathy which I've had for over 20 years before seeking a diagnosis. Even then after getting a diagnosis the neurologist didn't have any treatment answers to help with the numbness which is what brought me to Connect. I have idiopathic small fiber peripheral neuropathy and shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are some discussions on CIDP along with other autoimmune disorders. The Connect search function is helpful finding them. Here's a link to the discussions on CIDP - https://connect.mayoclinic.org/search/discussions/?search=CIDP.

Do you mind sharing what brought you to Connect?

@snowmass
I can totally relate. I am a 54 year old single parent of a 14 year old son and his sole provider. I lost my job last summer as part of a large layoff and have not been able to work since. My severance ran out early March. I now am on COBRA which is extremely expensive but need medical coverage for both of us (my son has ADHD and a heart defect and needs medications that are not cheap). It is hard emotionally in addition to physically and I have been very depressed and unable to function now which is so scary (used to be so productive, have 3 degrees, and worked a professional job 50-60 hours per week while juggling everything else and now only 10-20% my former self). I am not sure if I will qualify for disability and may need to hire a lawyer if denied. I did apply in February and waiting for the decision. In the meantime, I need to cover expenses with savings.

It is discouraging because I do think many doctors are overwhelmed and don’t really listen to their patients and their symptoms and put medication bandaids on when they don’t know what else to do. You feel like you are on a constant merry go round and going nowhere and not feeling any improvement in symptoms or quality of life.

My first neurologist kept testing and testing but I stopped going to him when he never really offered any treatment options following test results. My experience has been many doctors send you for tests and don’t really read the results or do anything with them so feels like a huge waste of time and money. My neurologist tested me for small fiber neuropathy with the punch biopsy in 2017 and it was confirmed I had this but he forgot and tested me again with other tests to see if I had SFN in 2019!!

My understanding is there really isn’t a cure for SFN but you need to treat the underlying cause if it can be identified (like diabetes, vitamin b12 deficiency, vitamin b6 toxicity, etc.). Some have neuropathy from chemo treatments (toxicity which kills nerves while trying to kill the cancer). You want to stop the progression as much as possible. Some nerve damage is permanent but some can regenerate.

What I am doing now for my SFN, spinal stenosis, DDD, cervical spondylitic myelopathy, Hashimoto’s thyroiditis, hearing loss (believe tied to SFN), osteoarthritis, antiphospholipin autoantibodies (tied to clotting risk), major depression, bilateral gluteal tendinopathy, bilateral hamstring high grade partial tears (no idea how/when this happened), long COVID, etc. is the following:

1. Pray!
2. Reduce stress as much as possible to reduce inflammation and get good sleep. Diet and hydration are important and I am trying to eat things that support nerve health and antioxidant.
3. Remove as many toxins out of your life as possible (in food, water, air, beauty products, no smoking/drinking, etc.). For example, I had saline breast implants which ruptured during COVID but the silicone liners are toxic and causing breast implant illness symptoms so I had them removed and not replaced and now taking supplements which are supposed to help detoxify your body (Inositol, Alpha Lipoic Acid and Acetyl L Carnitine which are also supposed to help with SFN. I notice less burning and pins/needles in my feet).
4. Find as many things as possible you can do for yourself that are within your control to feel better mentally, physically and spiritually and seek support of family, friends, neighbors, church and therapists to help you. I was never one to ask for help before and very independent but I needed to change everything in my life to accept my new reality and ask for help. It was very hard to hit my rock bottom but I am now on a path forward living in my new reality.
5. I am going to continue to pursue diagnoses and treatments but want to be realistic and prioritize symptoms because you feel yanked around when going to so many doctors and getting so many tests. I have upcoming appointments with orthopedic hip doctor, neurologist, primary doctor, new rheumatologist, new pulmonologist, and then surgeon for removal of gallbladder (it just stopped working and causes pain in my abdomen). I also may need surgery on my hamstrings and lumbar spine and need to prioritize and space everything out.

I wish you the best as you take day by day to get diagnosed and treated. You are definitely not alone and encourage you to leverage the Mayo Clinic support network along your journey. May God bless you.