Living with Neuropathy - Welcome to the group

Hi, @ryan900 - welcome to Mayo Clinic Connect. Since you were wanting input on whether you're symptoms might constitute peripheral neuropathy, I moved your post here to this thread with many members called "Living with Neuropathy - Welcome to the group."

Here you will meet members like @johnbishop @anniemae @artscaping @parus @kevinking @gailfaith and others who may have some input on your overly sensitive and at times burning-like pain in your palms with bone-type aches and stiffness in your wrists, forearms, fingers and thumb, bearing in mind you are a type 1 diabetic.

How is your pain today, @ryan900?

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Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.

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Absolutely! I live in Wisconsin. As soon as I walk out the door into the cold it lights the nerve pain right up. If it's windy it's even worse!

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Good Morning!.
I am new to this group. My name is Ronnie. I am 64 years old and live in Central Florida. My diagnosis of neuropathy was confirmed yesterday after several tests. My neuropathy is in my toes up to my ankles. In addition, my legs are weak

Although I have my diagnosis, I do not know what kind of neuropathy I have. I will see the neurologist in two weeks along with an appointment with my neurosurgeon right after. Although I don't know what kind of neuropathy I have, I was told it is coming from my spine (L5/S1).

I have been living with chronic pain for over 10 years. The pain came from my cervical and lumbar spine. Within this past year, I have had surgery on both and I am happy to say I no longer suffer from pain!!!!!!!!!!!! However, the lumber disc that is involved with this neuropathy (L5) is directly below L3/4, which is where I had my surgery. In addition, the nerves along my spine are clumping (clustering) together. The doctor who performed my test, yesterday, was surprised that I am not experiencing any pain because my neuropathy is quite advanced.

As a newly diagnosed person with neuropathy, I do have some questions I was hoping you (members) can share, based on your experiences. I don't know if the KIND of neuropathy has an impact??? If you feel uncomfortable answering my questions, no problem, I understand!!

1. Are you able to drive? The neuropathy is worse in my right foot and my hubby has concerns I will not be able to move my foot quickly enough in case of an emergency.
2. Can neuropathy be reversed?
3. Can neuropathy progression be stopped?
4. What limitations have YOU had? Is it because of your current situation or because the fear of getting worse?
5. I walk with a cane but I still fall and/or trip. How about YOU?
6. Have you gone for aquatic or land PT? Has it helped?
7. Do you experience pain? If so, did it start at the beginning of your neuropathy or since the progression?
8. How quickly did YOUR neuropathy progress or have you been able to slow it down or stop its progress?
9. Has surgery been suggested? If so, have you had surgery? What kind? Did it work?

Thanks for sharing.....
Ronnie (GRANDMAr)

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I have been dealing with neuropathy since I had a severe sprain which caused both CRPS and a traumatic neuroma to form back in 1998 in an area slightly closer to the toes than a Morton's Neuroma - its been suggested its a Morton's Neuroma and then after surgery redefined (again and again) as not one ugh. I have been through so many procedures and medicines - nerve blocks, surgeries, every suggested pill... My last major procedure was a surgery where the neuroma was removed - the pain stayed away about 9 months...now its back as bad as its ever been. I am on Lyrica, Cymbalta,Lidocaine/Prilocaine and Capsaicin cream.. each thing offers a bit of relief but no where near good relief. I stay active as I can. I practice walking properly or my foot turns in. It hurts insanely bad but I don't want my foot to weaken. The pain has spread up my shin ...weird thing is I have bruising that never goes away along my nerve line my doc says that can happen as the neuropathy spreads. I am 55 with 4 grown children and 2 grandkids. Married 37 years to a very supportive man who has his own health issues. And we own our business and work from home. I am feeling pretty down ...just tired of this. Not suicidal ... but so tired of it. How do you all get through the day?

Oh it is a cutaneous neuropathy in my left foot..and now shin.

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Good Morning!.
I am new to this group. My name is Ronnie. I am 64 years old and live in Central Florida. My diagnosis of neuropathy was confirmed yesterday after several tests. My neuropathy is in my toes up to my ankles. In addition, my legs are weak

Although I have my diagnosis, I do not know what kind of neuropathy I have. I will see the neurologist in two weeks along with an appointment with my neurosurgeon right after. Although I don't know what kind of neuropathy I have, I was told it is coming from my spine (L5/S1).

I have been living with chronic pain for over 10 years. The pain came from my cervical and lumbar spine. Within this past year, I have had surgery on both and I am happy to say I no longer suffer from pain!!!!!!!!!!!! However, the lumber disc that is involved with this neuropathy (L5) is directly below L3/4, which is where I had my surgery. In addition, the nerves along my spine are clumping (clustering) together. The doctor who performed my test, yesterday, was surprised that I am not experiencing any pain because my neuropathy is quite advanced.

As a newly diagnosed person with neuropathy, I do have some questions I was hoping you (members) can share, based on your experiences. I don't know if the KIND of neuropathy has an impact??? If you feel uncomfortable answering my questions, no problem, I understand!!

1. Are you able to drive? The neuropathy is worse in my right foot and my hubby has concerns I will not be able to move my foot quickly enough in case of an emergency.
2. Can neuropathy be reversed?
3. Can neuropathy progression be stopped?
4. What limitations have YOU had? Is it because of your current situation or because the fear of getting worse?
5. I walk with a cane but I still fall and/or trip. How about YOU?
6. Have you gone for aquatic or land PT? Has it helped?
7. Do you experience pain? If so, did it start at the beginning of your neuropathy or since the progression?
8. How quickly did YOUR neuropathy progress or have you been able to slow it down or stop its progress?
9. Has surgery been suggested? If so, have you had surgery? What kind? Did it work?

Thanks for sharing.....
Ronnie (GRANDMAr)

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Dear Ronnie,

If your neuropathy is caused by damage to your nerves in your spine, your neurosurgeon/orthopedic surgeon will have some idea if your neuropathy can possibly be improved through more surgery.

I am now 77. My neuropathy (profound and disabling) is not caused by nerve damage in my spine. I did have a compressed nerve in 2016, and the pain was terrible (sciatic type pain down my right leg). A laminectomy on L3/4 completely and immediately stopped the pain, thank goodness.

CAUSE: According to my Immunologist, my neuropathy is caused by my Immune System attacking and damaging my nerves. The irony is that my Immune System is deficient and cannot protect me, adequately, from infection. I have IVIG every four weeks to make my immune system stronger so that I am no longer constantly sick with viral, bacterial and fungal infections.. I'm very grateful for that.

1. Driving. When I asked my neurologist, he said that is my decision, not his! I now wear braces on both legs, and can no longer drive. That is one of the worst losses I've experienced so far.

2 and 3. From my research it seems that most neuropathies cannot be stopped, cured or reversed. The exceptions occur when the neuropathy has a very specific cause that is identified early and then the cause can be eliminated. Early diagnosis is important because usually nerves that are damaged cannot be repaired.

4 and 5. My neuropathy began long before it was diagnosed in 2010. I was stumbling, tiring easily, unable to take long walks, unable to ride a bicycle, and experiencing leg cramping and tingling feet. But I was dealing with so many OTHER health issues that I thought the problems I listed above were just due to being 'out of shape'. By 2010 I had profound neuropathy from my knees down. MY LIMITATIONS: I have 20% of normal physical abilities. I wear leg braces (2016) and walk with a walker (2017.

6. I've had PT 3 times for my legs. It doesn't help, I'm sad to say.

7. Because my neuropathy is profound, the nerves no longer function at all. So I don't have pain in my legs. However, I also have small fiber neuropathy in my skin, which hurts, burns and stings. Even my face, lips, tongue and eyes lids are affected. I take 4200 mg of Gabapentin daily to control that pain.

8. My neuropathy progressed quickly, I think. It started in my legs around 2002 at the same time I had nerve damage to the system that supplies saliva and tears. I take a medication to give me some saliva and tears. I have nerve damage to my bladder (2006) which has no real treatment, skin (2015) for which I take gabapentin, and the latest diagnosis is gastrointestinal neuropathy affecting my esophagus (dysmotility and achalasia) and my small intestine which causes SIBO, small intestine bacterial overgrowth. Achalasia (failure of the valve at the bottom of the esophagus to open properly) is treated with outpatient surgery (which will have to be repeated since) and SIBO is treated with antibiotics and which will return eventually and have to be treated again.

9. Surgery will not help my neuropathy since the nerves are damaged by my Immune System.

My case is an extreme example of immune mediated neuropathy. However about 30% of people with autoimmune/immune disorders have some form of neuropathy.

Hope this helps.

Regards, ElaineD

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Good morning Ronnie! @grandmar, Glad you found this discussion. Age 75 - my experience and 2 cents with my idiopathic small fiber neuropathy...
1. Driving - I can still drive, do not like driving more than an hour or so, or at night.
2. Can neuropathy be reversed? - maybe, depends on type, cause, etc..
3. Can neuropathy progression be stopped? - maybe, I think mine has been slowed or stopped but it's subjective on my part - my story shared here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
4. What limitations have YOU had? I try not to let the old man in - I can't run anymore ☺ and can only do moderate exercise.
5. I walk with a cane but I still fall and/or trip. How about YOU? Me too sometimes but I'm hoping to ditch the cane after a knee replacement next month.
6. Have you gone for aquatic or land PT? Has it helped? Nope, but I think it has helped a lot of people.
Foundation for Peripheral Neuropathy - Exercise and PT
-- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/
Effectiveness of aquatic versus land physiotherapy in the treatment of peripheral neuropathies: a randomized controlled trial
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5952298/
7. Do you experience pain? Nope, numbness only
8. How quickly did YOUR neuropathy progress or have you been able to slow it down or stop its progress? - link for question 3
9. Has surgery been suggested? Nope

As much as I would love it, there is no cure for neuropathy - still waiting for the magic bullet. Diabetic neuropathy is really the only type that I have read that can be reversed but I have no medical training or background so it's just what I have read.

Hoping my neuropathy friends have a pain free day or at least are able to deal with it to make it feel like it's better.

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