Likelihood that the pain will progress or stop?

@stevebern, It's a question we have all asked ourselves will the pain and/or numbness from neuropathy continue to progress. I'm not sure there is a clear cut answer as many of us have started discussions and commented on neuropathy progression. Here's a search link that shows the many discussions and comments from members on the topic - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20progression.

I think that is the basis for our motive to keep looking for something that helps provide relief for our symptoms and to some extent gives us hope. That's one of the reasons that I like going back and checking my favorite neuropathy site every once in awhile to see if there is anything new - https://www.foundationforpn.org/living-well/.

Have you done any research on lifestyle type changes or alternative treatments that might provide some relief?

Hello and I feel for you.
I am in year 5 of similar pain, I woke up from a coma induced from covid. I took me months to realize I had sever nerve damage.
1 years ago from continued medical visits they finaly realized I had cidp and started on hizentra.
It is now a completely different life.
I'm regaining balance and the numbness is getting better. The pain is slowly residing.
Have a look into hemoglobin treatment. It has helped me and I hope it helps you.
Love from spain

@stevebern
Have you been diagnosed with small fiber neuropathy via skin punch biopsy? Have you been told what is causing your neuropathy? Have you had EMG/nerve conduction studies done by a neurologist? Have you had extensive blood work to determine if you have any deficiency or toxicity of vitamins/minerals? Are you diabetic or do you drink alcohol? That makes neuropathy worse. If you have any inflammation in your body it can make neuropathy worse.

Have you had any MRIs of your neck or lower back to see if you have any compressed nerves?

Thank you for responding, dlydailyhope.

I have not had a skin punch, I have had multiple EMG studies done, as well as a billion blood tests & spinal tap. Then I went to a rheumatologist and had a billion more… and I’m as healthy as a person can be, no anomalies or anything out of the green zone.

Never had aches or pains, never was sick, never spent a night in a hospital. I was very active, walking miles at a time, playing sports for hours, just very healthy.

Not diabetic, never drank alcohol, never did drugs until I started on medical marijuana a few years ago.

I’ve had MRI’s and CT scans - no bulges, no compression, no pinched nerves, all was unremarkable.

Official diagnosis according to 4 separate neurologists (including extensive investigation & follow-ups at Mayo & Cleveland clinics) is that it’s Idiopathic Peripheral Polyneuropahy, and no one knows what to do about it.

I’m 6’-4”, and when this started I was 262 pounds, so at the suggestion of my very supportive wife, I lost 40 pounds and cut out a lot of sugar… after two years, the only thing that’s changed is there’s more numbness and pain. Oh, and I had to stop working three years ago at 58 years old because I can’t even sit at a desk chair for more than a half hour.

I’ve tried every salve, balm, ointment, supplement, electric shock gadget and shoe insert. I walk (hobble) with a big walking stick and I spend my days on one of several recliners we have, with a heating blanket on my feet. I could only walk our dog 400 steps today, and I soon won’t even be able to do that.

I’m on Medicare now and am not done looking for ways to relieve the pain, including an upcoming hypnotherapist and an attempt to be seen at Johns Hopkins. PT was way too painful to have any benefit, but I found a place that puts you in a harness to take most of your weight off so you can do balance exercises.

I welcome any and all ideas, and am just trying to somehow mentally prepare myself for the next 20 or 25 years of increasing pain and immobility.

You sound a lot like me: never really sick, never spent a night in the hospital, athletic(tennis, cycling, golf, skiing, etc,). After a ski fall I experienced lower back pain. After a year and a half, I went to a neurologist who prescribed a cocktail of drugs that really helped. A year later I had a spinal cord stimulator implanted. Along with the meds I was almost pain free for about three years. Then the pain came flooding back for no apparent reason(2021). I had the pain pump implanted in 2023. Has neve given me any relief. I'm in the process of turning it down so I can have it removed. I never had any neuropathic pain until about six months ago. Then it began to creep into my feet, ankles, knees, thighs, and arms. EMG "diagnosed" it as Idiopathic Poly Neuropathy. In other words they don't know the cause. My meds barely touch it. Not sure where to go from here. Hope you can find something to help, I am seventy-seven but feeling a hundred. LOL.

Have you tried acupuncture? It has helped me tremendously but took about a month to have any effect. I now go every other week and am able to sleep better and function better during the day.

Hi Steve, you didn't answer dlydailyhope's question: "Have you had extensive blood work to determine if you have any deficiency or toxicity of vitamins/minerals?" This is one of my questions.

I have been living with peripheral neuropathy for 14 years. At the time my D3 levels were critically low, around 9. I have it tested each year now and my D levels only stay in the normal range if I take about 7,000iu daily.

I developed sensory and autonomic neuropathies 10 years ago after an episode of Guallain Barre Syndrome, and things have been getting progressively worse. I recently learned about how the deficiency or toxicity of vitamins/minerals can exacerbate neuropathy symptoms and, in some cases, cause it. Deficiencies in B1, B6, B12, and D3 are a part of this picture, as well as the toxicity of too much B6.

I recently discovered I am deficient in a form of vitamin E that can cause PN symptoms and have B6 toxicity. I stopped taking B Complex a few years ago when I learned about B6 toxicity, yet my multivitamin contained it. I stopped the multivitamin in mid-December and started on the correct form of vitamin E, and my symptoms are lessening. Any of these nutritional deficiencies or excesses can cause neuropathy issues. There are probably more, but these are what I am familiar with.

Taking medical grade third-party analyzed supplements is important, as well as knowing exactly what you need. Other supplements that help with neuropathy are NAC, 5-HTP, Co-Q10, R-ALA, magnesium glycinate, to name a few.

I am also wondering if you have removed the foods that aggravate nerves from your diet, mainly gluten, dairy, brown rice, sugar, and caffeine. If I consume any of these, my nervous system suffers, and my symptoms flare up.

Hi
Fred here, the 81 year old Vietnam Veteran. Still searching high and wide for help with my severe body inflammation. Deicded to start the new year weanig off all meds and back to exercising after a 32 day bout with Covid- worst sickness I have ever had.

My main medical doctor and I agreed that I am going to start with no more Tamsuloin or Finasteride and already seem to be feeling a bit better in only one day- too many side affects of medicatioms which I am so highly allergic to!! Will keep everyone intersted in updats. I also feel strongly that we need to put lots of pressure onthe Whit House to investigate and reallly curb the power of big med empire who seems to control a lot of what might work for us all- I am convinved of that given all I have read about research and progress in other countries. Semper Fi!

I haven’t tried that, and I haven’t tried the serious stuff being offered… methadone, ketamine, spinal cord stimulation.

I figured it’s too soon (at 61) to become an addict… but it’s probably on the playlist.

But actually, I AM holding off acupuncture, but not for too long much longer… thanks for the reminder.

Do you see someone with traditional Chinese experience?

Hi inmagic, sorry for not answering that part… yes, I’ve had endless blood tests, spinal taps, emg’s, mri’s, ct scans, etc. and everything is in the green.

Then I went to a rheumatologist, who did even more exotic blood & urine tests.

No deficiencies or red flags ever showed.

I’ve tried several supplements (and anti-depressants) for 30 or 60 days, one at a time to have a clean test… no change.

I have not, and probably will not remove those things from my diet (although I have cut down a lot on sugar and bread), because honestly… without SOME pleasure, what’s the point of life?

There’s nothing but exquisite pain, 24/7… I’m gonna have pizza and ice cream with too much hot fudge if I want it.