Support for small fiber neuropathy with cold intolerance sensory nerve

Posted by gcattnu39 @gcattnu39, Jun 23 4:29pm

I have idiopathic autonomic peripheral small fiber neuropathy that has damaged my cold and hot sensory nerve endings. I am extremely sensitive to cold temperatures and my body is sensitive to cold and hot objects when I touch them.
My symptoms became a lot worse three years ago and after getting Covid this winter. I am freezing all of the time from head to toe.

Does anyone have these symptoms and has anything helped with the symptoms?
This all happened after a car accident and I injured my neck again!

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@gcattnu39

Hi….
Thanks for sharing! I wear many layers of clothes and bring blankets with me, too!

Do your symptoms get worse after being in colder environments (air conditioning or colder outside temperatures)?

Does anything help with the symptoms? Mine has become a lot worse and Covid made it worse!

Thanks!

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Since, I can’t feel my feet when they start hurting I take off my shoes for my husband to tell me if they are colder. If so he wraps a heating pad around them and a blanket. After, awhile he takes off the heating pad, leaves on the socks and blanket.

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@gcattnu39

Hi….
Have been to Mayo Clinic twice in MN and had many tests for blood work, MRI, EKG, thyroid, etc. One doctor said I had slightly elevated symptoms and I might have Sjogrens….but no definite diagnosis! Said I could take Sjogrens drugs to see if it helps but neurologist didn’t recommend it! Was not happy with Mayo Clinic on how I was treated!

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Did Mayo Clinic test you for serinegative Sjogrens? I was tested for it came up positive. The thing I dislike the most is I had my teeth cleaned six months ago and went back. I need seven crowns from cavities. I brush, floss, use a water pick along with using prescription fluoride.
The test include brain scan,
lip biopsy and two eye test to check for dry eyes and scratches on the cornea. They can also biopsy the salvia gland.

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@artemis1886

Did Mayo Clinic test you for serinegative Sjogrens? I was tested for it came up positive. The thing I dislike the most is I had my teeth cleaned six months ago and went back. I need seven crowns from cavities. I brush, floss, use a water pick along with using prescription fluoride.
The test include brain scan,
lip biopsy and two eye test to check for dry eyes and scratches on the cornea. They can also biopsy the salvia gland.

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I have the same problem my teeth gets decays all the time.
For dry eyes my naturopath recommended bilberry supplements ,and it helps! I don't have to use any eye drops.

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@sharka

I have the same problem my teeth gets decays all the time.
For dry eyes my naturopath recommended bilberry supplements ,and it helps! I don't have to use any eye drops.

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What kind of bilberry supplements do you use and how many milligrams. Is it just one pill a day? I would love to get rid of eye drops they dry and then you have dried stuff around your eyes.

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@artemis1886

What kind of bilberry supplements do you use and how many milligrams. Is it just one pill a day? I would love to get rid of eye drops they dry and then you have dried stuff around your eyes.

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https://carusosnaturalhealth.com.au/products/bilberry-15000
It's made in Australia, but anything similar should be working,
They do have special often, sometimes 2 for price of one.
I'm sure they post overseas.
It's amazing like soon after I have one, can feel my eyes are moist.
Worth trying.

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I would be having an MRI on your neck. I didn't realise i had a spur grow from C6 in my neck through the water and resting on my spinal cord. The amount of problems this causes is crazy. Ended up having surgery to remove it because had i had another car accident or fallen over i would have been in a wheel chair for the rest of my life. I only found out due to a very soft neck crack by a physio and i was paralyzed partially. The amount of nerve sensory problems was shocking and also there were alot of foods i could not eat.... strange but true and as soon as my neck was fixed ... i could eat those foods again. Apparently the spinal cord and the stomach are grown at the same time and one effects the other....
I also have Lupus so that has a whole set of new problems ... I can be in the middle of summer and my feet are freezing. Anyway thats enough from this duck hahahah take care

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@artemis1886

What kind of bilberry supplements do you use and how many milligrams. Is it just one pill a day? I would love to get rid of eye drops they dry and then you have dried stuff around your eyes.

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Have you tried Xiidra eye drops? I’m not a fan of drops either, but my Optometrist prescribed it and I’ve been very pleased. A drop in each eye at bedtime and first thing in the morning. My eye produce a lot of tears for a minute, and yes, when it dries I have little white flakes from the dried up tears I have to wipe off shortly afterward; but…. I haven’t needed any other drops during the day and can read all day without having dry eyes. An added bonus is I notice my vision doesn’t get blurry or tired like it once did. I’ve only been using it for 2 months, but maybe something you might add as k about, if you haven’t already tried it?

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@dbeshears1

Have you tried Xiidra eye drops? I’m not a fan of drops either, but my Optometrist prescribed it and I’ve been very pleased. A drop in each eye at bedtime and first thing in the morning. My eye produce a lot of tears for a minute, and yes, when it dries I have little white flakes from the dried up tears I have to wipe off shortly afterward; but…. I haven’t needed any other drops during the day and can read all day without having dry eyes. An added bonus is I notice my vision doesn’t get blurry or tired like it once did. I’ve only been using it for 2 months, but maybe something you might add as k about, if you haven’t already tried it?

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It has a sulfa component to it. My eyes swelled shut so I can’t take it.

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I have dry eyes and mouth. I have been tested for Sjoren’s. If I don’t keep my mouth moist, I will quickly develop a coated tongue with painful white bumps (lie bumps), and small painful sores on the soft tissue areas.
For eyes, I use Restasis drops twice a day. I tried the Xiidria drops, but I had a bad taste in my mouth after each dose.
For mouth, an ENT prescribed pilocarpine 5mg, 3-4 daily prn. This works great - immediately produces saliva.

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@julbpat

I have dry eyes and mouth. I have been tested for Sjoren’s. If I don’t keep my mouth moist, I will quickly develop a coated tongue with painful white bumps (lie bumps), and small painful sores on the soft tissue areas.
For eyes, I use Restasis drops twice a day. I tried the Xiidria drops, but I had a bad taste in my mouth after each dose.
For mouth, an ENT prescribed pilocarpine 5mg, 3-4 daily prn. This works great - immediately produces saliva.

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@julbpat Do you have trouble with sweating after taking the pilocarpine? First day I took it I went to work at a factory and had temperature check for Covid and I had a temperature about 15 minutes later it was gone , so I started waiting until I got to work to take it. Sometimes after I took it I would just start sweating so much I asked to be switched to another medicine which they put me on Cevilemine big mistake I would wake up soaking wet from sweat. I just recently switched back to pilocarpine and the sweating is not as bad

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