Living with Neuropathy - Welcome to the group

Hi there @helennicola........that is a great question. Now, what would that helpful drug do? Would it be important to be able to keep the nerves from aging.....and then dying? Sort of like a specialized anti-aging medication? If that isn't possible what about replacement......there may be hope there. I just imagine the millions of nerves that someone with SFN must replace. Perhaps there are ways to take better care of our nerves if we could start at an earlier age.

Do you think there needs to be more funding options for scientific research? Are "we" with neuropathy of any kind, passed by because there is no measure of success......no guidelines for improvement and the patients always die anyway. Are there quality of life opportunities? Can we really turn pain into joy?

I have been told by clinicians "if they live long enough everyone will develop neuropathy".

I watch (with my heart) our members who run smack into a huge impassable wall when finding out a cure for their neuropathy just isn't going to be an option at this time.

Your posts often reflect my thinking. Thank you for sharing your thoughts. Is there anything else you think we should contemplate?

May you have peace and be content.
Chris

Thank you so much for the welcome. I have extreme sensitivity to cold and air and greatly increases nerve pain. Does anybody else have this issue?

@steeldove @phoenix0509 @johnbishop @jesfactsmon @airpod

I hadn't lined up that whole name of my variation of sfn. But, I can use the long string of words John wrote, which is small fiber sensorimotor axonal peripheral polyneuropathy. How's that for a handle!

Jim

Hello @candilynn, Welcome to Mayo Clinic Connect. I am sure there are some other members here on Connect that share your symptoms of extreme sensitivity to the cold and the air greatly increases nerve pain. I only have numbness with my small fiber peripheral neuropathy but other members may be able to share how the cold and air affects their nerve pain.

Are you able to share a little more about your diagnosis?

Chris, I have no answers unfortunately, just questions. There are so many drug choices for so many ailments, I almost think maybe scientists find it impossible to discover a successful treatment for nerve disease. My first choice of course would be to stop the progression, second, to heal and third to prevent pain with no side effects. No new thoughts; just the same: positive thinking, (mindfulness) diversions, love, and comfort. I Hope you have a lovely peaceful weekend, the fall weather here has been beautiful so I am enjoying every day while I can. Helen

Thanks Hank, sounds like you all have fpund a recipe that helps decrease your wifes pain. I wish she could do a little walking around your neighborhood, but it sounds like she is in too much pain to do any walking. Keep buggering on-Thank you 👱‍♀️

Hello Candilynn and may I extend a very warm welcome!!! I'm sorry to hear about your pain. I too am very sensitive to the cold and in fact, years before I was formerly diagnosed w/ small fiber peripheral neuropathy, I used to make a joke that the mere barimetric pressure stung my face so much tears roll! Even a soft washcloth feels like sandpaper! The wind makes my facial skin sting. It coud be part and mostly neuropathy and also Fibromyalgia as well.

We know that there are findings although different, on skin biopsies for both diesases/conditions.

You know, for years the Rheumatologists and Neurologists have been at war over which specialty should manage these two diseases/conditions. They both involve nerves. I'm thinking that in the future, one of these specialties will manage both and I would think it would be Neurologists.

I know you will find a lot of support, encouragement, information and inspiration here on the Connect blog.

Many warm blessings, Sunnyflower

Hello John and @specialty555, I am so sorry to hear about your journey @specialty555. I have adrenal insufficiency from long-term steroid use aka am steroid dependent. The treatment for a crisis is steroids! So I have injectable at home if I am unable to take my daily oral dose. It showed up as low cortisole when tested.

Do you have an Endocrinologist who can manage this for you? Very important!!!

The average healthy person's body make about the equivalent of 5mg. of prednisone daily.

Infections, stress can really cause a crisis.

I wish all the best for you and will keep you in my prayers!

Warmest wishes, Sunnyflower

@sunnyflower thank you so much!!! I am on my 3rd endocrinologist I saw her a week ago and she wanted all the reports and rest results. She called me on Friday and said I just have to confirm something cause it does not make sense to me...you were in the hospital they put you on treatment you felt great, was released and didn't fell well few days later they lower your dose then they take you off the medication?? I said yes! She said that makes no sense. I hope she will have an answer for me this week. I am just so frustrated. I am so sick and tired of feeling like this. I sleep for a few hours then I am up. I am so desperate. My levels have been so low then 1 time they were high but I just feel horrible. I wish you the best. Thanks for your info

Oh my gracious! I hope they get this all figured for you STAT!! I 'm so sorry!

I have a lot of specialists over the years and also worked as a Medical Assistant for 20 years and coordinated a lot of patient care.

My take away is that we have to be our own advocate and fight like crazy to keep the doctors apprised of our status and ask a lot of questions. Ask for referrals and Diagnostics. They have 2-3 thousands of patients on their panels and even see other patients as well so they can't keep up on everything going on in each of our lives.

It can be exhausting and discouraging but do your homework, be prepared, don't be intimated, make a list of questions.

I am going to send my neurologist my list of questions for my upcoming phone visit and tell her I thought she may like to know ahead of time to make for a more efficient, productive visit. And, if she needs a longer appointment time to keep her on schedule, then I am willing to reschedule if within a reasonable time.

As an MA, I tried to keep my docs on schedule and they appreciated it. The docs are mostly all great but the system fails a lot.

@specialty555, I will keep you in my thoughts and prayers. Keep us posted, we really do care! Warmest wishes, Sunnyflower 😊🙏. @johnbishop @jesfactsmon @lorirenee1