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Peripheral Neuropathy vs. Erythromelalgia

Autoimmune Diseases | Last Active: Sep 7 11:43am | Replies (56)
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@dipperlip1

I was diagnosed by Mayo's in Rochester with EM in 2006. They now what it is but no cure. Then 2 Years ago I developed neuropathy and my EM which has gotten better came back with a vengeance. I also have Raynauds My feet get very red and hot a night and in the morning after I am up for a while my toes turn blue and purple and cold. By mid afternoon my feet will turn fire red and swell and burn and also my ears. I am taking 650 mg. Alpha Lipoic acid since it supposed to be good for both the EM and Raynauds and 600 mg. Gababentine at bedtime to help my sleep (does not help to much). I am watching what I eat. Fruit, vegetables, whole grains, nuts and for sweets mainly extra dark chocolate. My neurologist has no good answer and neither does my Rheumatologist. Is anyone dealing with all of these conditions and if so, what do you do?

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Replies to "I was diagnosed by Mayo's in Rochester with EM in 2006. They now what it is..."
John, Volunteer Mentor | @johnbishop | Feb 7, 2022

Hi @dipperlip1, I'm wondering if the feet going from cold to hot and changing colors is caused by Raynaud's since it's one of the symptoms. There is a discussion you might find helpful:
-- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/.

I did find some suggestions that might help your condition listed in the following article -- What you need to know about Raynaud's disease: https://www.medicalnewstoday.com/articles/176713

@gardeningjunkie, @degarden_girl and others may have some suggestions or information for you also.

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gardeningjunkie | @gardeningjunkie | Feb 7, 2022

My Reynauld's would cause color change, from natural to red to white/clear when exposed to cold and this was a painful process. When heat was applied to reverse the symtoms I could watch the red color return to the clear translucent extremities., then the natural color returned.
At night I needed a heating pad to warm my feet, but once warm I could turn off the pad and here's the difference between my symtoms and yours, my feet never turned fire red and swell when they were hot.
As I have brought up, my lifetime of dealing with Reynauld's is almost forgotton. I've been taking CQ 10 for about 4 years. About 2 years ago I noticed I no longer needed to wear gloves just to handle cold wet produce in the grocery store or require my heating pad for my feet at night. I can wear flip flops most of the year. CQ 10 is only reported to work if you have had Renauld's all your life, it doesn't help if it is a side affect of a disease.
Also 3 years ago I cut out processed sugar, that lowered my internal inflamation and perhaps that helped too.

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