Member Neuropathy Journey Stories: What's Yours?

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

Good morning
I have had two brain surgeries, diagnosed and an ankle replacement. I have tried gabapentin, nortriptyline, Lexapro, hydrocodone and Cymbalta. I am currently on hydrocodone it helps. I had a lot of side affects from the medications and decided to come off all the drugs and try to figure out ways to live with the pain. When I was on the medications I could not tell what was due to the small fiber neuropathy or the side affects of the medications. Now I am at a cross roads do I continue trying to live with the pain which is robbing me of opportunities and retirement. With the small fiber neuropathy my body causes me pain anytime I do anything standing, sitting, walking and laying in bed. The only thing I have left is my ability to think clearly with the antidepressants and anti seizure medications I was no longer able to think clearly.
Has anyone else found themselves at this cross road I would like to hear both successes and and set backs.
Thanks

Hello Dan @hansblix, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in this discussion so that you can read the stories of different members and learn what they have shared from their experience. If you click the VIEW & REPLY button in the email notification it will take you to this post in the discussion - Member Neuropathy Journey Stories: What's Yours? You might want to scroll to the top of the discussion and click the First button to take you to page one if you have not already read my story.

You mentioned that you have the same diagnosis as myself - idiopathic small fiber peripheral neuropathy and you were diagnosed at Mayo. You also mentioned this is the first winter of having the severe pain and you are now having trouble with the cold here in the midwest. I don't have the pain with my neuropathy but I can really feel the cold and it bothers me also. I have to wear just below the knee compression socks which are thin so in the winter time I also wear some heavy wool socks over the compression socks to help keep the feet warm. When I have to work outside, I've also discovered adhesive toe warmers which I can attach to the bottom of my socks at the toes, aptly called "Little Hotties". They do keep my toes and feet warm and last around 5 hours which helps a lot. Shoes are really important also. I've pretty much gone to all slip-ons for convenience. There is another discussion for shoes that help with neuropathy that you might find helpful

- If the shoe fits...right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

You mentioned the cold being your current concern because of the midwest winter time. Are you currently taking medication to treat the neuropathic pain? Are you able to share a little more about your symptoms?

Hello John, @johnbishop and anyone else. I am new here, and would like to learn more about what we may all be going through, in different ways and in different circumstances.

Please allow me get it out, because I and my wife (and 3 children) are greatly troubled:

I have been diagnosed with "idiopathic bilateral sensory neuropathy" in the FEET at Mayo Rochester in early December 2020 (EMG, sweat test, and all the rest). I take it that many of you know some of the coping and medical strategies for this. Also MIGRAINES.

But I have increasing pain in both KNEES. They took a July 2020 MRI on both knees that revealed "patelloformal syndrome" (moderate cartilage loss under both kneecaps) that, according to the following 3 specialists, does not correspond to the severity of the pain I am experiencing. Thus each of these doctors have just referred me to other doctors and left the matter undiagnosed and untreated:

1) A local highly-ranked orthopedic surgeon who referred me immediately to a well-known opiate doctor (July 2020)

2) A local young rheumatologist who said it's not rheumatological and said, somewhat irresponsibly, I've never seen such a case and "it must be a rare nerve disorder." (September 2020)

3) A local muskuloskeletal neurologist who a) did not know what patelloformal syndrome even was, b) said I was wrongly referred to him by the local neurologist coordinating all my care, c) that the rheumatologist was wrong when she said it was a nerve disorder, d) I should seek pain management (opiates). (Yesterday, 4 January 2021).

For the knees, I have lidocaine patches 5% for each knee, 12 hours on each day, 12 hours off. I'm taking tizanidine 4mg but I think that just calms me down a bit, and I think it's a muscle relaxer and doesn't address the nerve issue. I also use CBD topical cream.

I am on 800mg of gabapentin 3x a day for 5 months. Things are not getting better.

Needless to say, I am at my wit's end. SO...

Immediately after yesterday's muskuloskeletal specialist consult I scheduled an emergency psychiatric consult with a social worker and a psychiatrist for psychological TRAUMA for this afternoon (5 January 2021).

(All these nerve/neuropathy problems started about 6 weeks after I was hospitalized with "unintentional lithium toxicity" and withdrawn abruptly from very high doses of lithium (the psychiatrist admitted he never tested me for lithium blood levels; for 10 years he said he confused me with another patient of his) and effexor and trazodone.)

At today's TRAUMA consult, it looks like I will be asking for duloxetine & a shoulder to cry on for having to pay all the "costs," financial and physical and psychological, for many MDs not healing, but in many ways harming.

Mindbody techniques have been helpful, but I need a crutch, a band-aid, a drug, but precisely the kind of serotonin/norepinephrine drug that was perhaps wrongly given to me for years based on a misdiagnosis of bipolar II that stuck with me for 20 years.

Now it's out. I don't know who will read this, but it's now out.

Perhaps I am not alone.

Thank you for reading this.

Daniel

Hello John, @johnbishop and anyone else. I am new here, and would like to learn more about what we may all be going through, in different ways and in different circumstances.

Please allow me get it out, because I and my wife (and 3 children) are greatly troubled:

I have been diagnosed with "idiopathic bilateral sensory neuropathy" in the FEET at Mayo Rochester in early December 2020 (EMG, sweat test, and all the rest). I take it that many of you know some of the coping and medical strategies for this. Also MIGRAINES.

But I have increasing pain in both KNEES. They took a July 2020 MRI on both knees that revealed "patelloformal syndrome" (moderate cartilage loss under both kneecaps) that, according to the following 3 specialists, does not correspond to the severity of the pain I am experiencing. Thus each of these doctors have just referred me to other doctors and left the matter undiagnosed and untreated:

1) A local highly-ranked orthopedic surgeon who referred me immediately to a well-known opiate doctor (July 2020)

2) A local young rheumatologist who said it's not rheumatological and said, somewhat irresponsibly, I've never seen such a case and "it must be a rare nerve disorder." (September 2020)

3) A local muskuloskeletal neurologist who a) did not know what patelloformal syndrome even was, b) said I was wrongly referred to him by the local neurologist coordinating all my care, c) that the rheumatologist was wrong when she said it was a nerve disorder, d) I should seek pain management (opiates). (Yesterday, 4 January 2021).

For the knees, I have lidocaine patches 5% for each knee, 12 hours on each day, 12 hours off. I'm taking tizanidine 4mg but I think that just calms me down a bit, and I think it's a muscle relaxer and doesn't address the nerve issue. I also use CBD topical cream.

I am on 800mg of gabapentin 3x a day for 5 months. Things are not getting better.

Needless to say, I am at my wit's end. SO...

Immediately after yesterday's muskuloskeletal specialist consult I scheduled an emergency psychiatric consult with a social worker and a psychiatrist for psychological TRAUMA for this afternoon (5 January 2021).

(All these nerve/neuropathy problems started about 6 weeks after I was hospitalized with "unintentional lithium toxicity" and withdrawn abruptly from very high doses of lithium (the psychiatrist admitted he never tested me for lithium blood levels; for 10 years he said he confused me with another patient of his) and effexor and trazodone.)

At today's TRAUMA consult, it looks like I will be asking for duloxetine & a shoulder to cry on for having to pay all the "costs," financial and physical and psychological, for many MDs not healing, but in many ways harming.

Mindbody techniques have been helpful, but I need a crutch, a band-aid, a drug, but precisely the kind of serotonin/norepinephrine drug that was perhaps wrongly given to me for years based on a misdiagnosis of bipolar II that stuck with me for 20 years.

Now it's out. I don't know who will read this, but it's now out.

Perhaps I am not alone.

Thank you for reading this.

Daniel

I do not think misery loves company,but your neuropathy journeys connect us with encouragement and insight,thank you! I have had those shots between my toes,no relief but a jump in pain during the injections! I have no advice or suggestions for any burn control,cramping,electrical jolts or any new reaction to idiopathetic neuropathy. I will always be on the train to finding some relief,as we all are. For today I will eat ice cream a healthy diet can't be balanced without ice cream!

@notborntoburn you will notice that I have moved your post into the member neuropathy journey stories discussion to continue your conversation with other members about the general feelings of living with neuropathy.

Can I ask when you had the injections between your toes?