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Peripheral Neuropathy And Heat

schmoogilah

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schmoogilah Newbie
schmoogilah
Posted

Hello,

I haven't been diagnosed yet, but I have a doctor's appointment this week to start the ball rolling on testing/etc. I have many of the symtoms, but have only just heard of Celiac - I listened to the People's Pharmacy on NPR this week and I had to pull over I was so shocked!

Many of the symptoms I've had all my life - bowel issues, depression, fatigue, etc... but two years ago I developed peripheral neuropathy and have been to many doctors and neurologists who have all basically told me that they have no idea why I have it. Idiopathic indeed!

I just wanted to ask of those of you who suffer from neuropathy, is it heat activated?

When I first developed this problem, it was in the Spring of 2008. It began with the sensation of numbness and tingling in my fingers and toes. Fairly slowly, over the course of about 2 months, a dull ache spread from my fingers into my hands and forarms. The same from my toes into my feet and calves. This ache felt like hangover pain when your body is dehydrated - except I don't drink! Gradually this dull ache grew worse and worse until the pain was almost unbearable. The pain spread up my arms and up my legs, but the numbness and tingling seemed confined to fingers and toes.

After weeks on opiates (which never really worked well), a neurologist finally suggested neurontin, and that actually does work - though a low level of ache and tingling is always there in the background, but I can live my life!

Remarkably, in the Fall of that year, the symptoms grew less and less, and I was actually able to wean myself off the neurontin entirely by Thanksgiving. No more pain, no more tingling.

But this Spring, it all started again, and as the heat bloomed, so did my pain. It's HOT already here in NC and I'm back on neurontin.

Has anyone heard of peripheral neuropathy that behaves this way?

Thanks for reading!

Jamie S.

Chapel Hill, NC

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ang1e0251 Contributor
ang1e0251
Posted

My symptoms were never as severe as yours. The tingling and burning in my feet was the worst. I guess I always suffer over all in the heat so I never noticed that my feet were worse then. I always thought it was just that being on my feet made them hot any time of year. I will have to say that is gone since I went gluten-free. When glutened it does come back for about a week in a mild version.

TrillumHunter Enthusiast
TrillumHunter
Posted

Sounds familiar. PN was my first symptom. It was much worse when I got hot. I was told it was most likely MS as I did have abnormalities in my MRI. That or just nothing. :blink: After suffering with it, and it is painful, for about eight years a neurologist diagnosed me with pernicious anemia--b-12. Her words were, "I don't know how you're walking around with a level this low!" I started injections and it did get much better. I was finally diagnosed with celiac about five years later and that has cleared it up entirely. I still take a monthly shot and I can tell when I'm overdue. But I haven't had anywhere near the problems I did before.

Here's what I would suggest-get a celiac panel run along with a check of your serum B-12, ferritin, folic acid and vitamin D. That's where I would begin if I was your doctor.

Best wishes for your good health!

Mrs. Smith Explorer
Mrs. Smith
Posted

Sounds just like me. Resolved gluten-free and with 3000mg methyl b12 a day.

schmoogilah Newbie
schmoogilah
Posted
  • Author

Hey, thanks for the quick replies!

All this is still a bit overwhelming, and my brain is reeling with all this information... yet I feel hopeful for the first time in soooo long...

Thanks again, and I will begin reading more on these forums. The internet IS good for something at last!!!!!

Tomorrow I have my MD appt and will start the ball rolling with the celiac disease panel and the other tests that were suggested: B12, Vit D, etc...

-J

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