Peripheral Neuropathy vs. Erythromelalgia

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.

Jump to this post

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.

Jump to this post

Hello does anyone have Erythromelalgia of the face? I have SFN of the hands legs feet and I think on my face from Sjogrens. I also have Raynaud's in hands and feet. In the last year the SFN is getting worse, the livedo reticularis is getting worse, Raynauds worse, and now my face gets really red in malar rash pattern when in the light (outside) or with heat. I do not have the Lupus antibodies in my blood.

Jump to this post

Red, hot, and feels like sunburn.

Jump to this post

I also have both , PN and Erythromelagia . It’s a constant daily struggle for sure. Both of these affect my feet from just below my ankles to the tips of all toes. My diagnosis is Sjogrens ( includes Raynauds both feet and hands) PN and Erythromelagia. I started with Raynauds in my late teens. The rest of it has developed over the years and I’m now 75. For the EM/PN I take Gabapentin. I also take Hydroxychloraquine, Mobic and Evoxac . I have been applying Rhofade cream to my feet three times a day for the EM. This helps for about 2-3 hrs. I also have “ cold socks” that I use when my feet are on fire.
I see a Rheumatologist at JHH. He is constantly researching for treatments for the Erythromelagia. The nights are the worst as it seems lying down causes the symptoms to flare. Showing the cold socks that I use to reduce the inflammation.

Jump to this post

Yes mine swells and burns and tingles. Seems like now I'm getting it almost every day. Who diagnosed yours? What can you do for it? Do you have it all the time? Is it from a small fiber neuropathy of the face from Sjogrens?

Jump to this post

It’s the worst in my feet and legs. I saw all kinds of different doctors and specialists that didn’t know what it was. On a trip to the ER because the pain was so bad (no one would give me anything for pain) some random DR in the ER knew what it was immediately because his sister had it. Referred me to a rheumatologist with the diagnosis. The stuff they’ve tried doesn’t really do much. EM is odd because what helps one person won’t do anything for another. So unfortunately you’re likely in for some trial and error. The burning and swelling isn’t constant like it used to be. I’ve made a lot of life and environment adjustments to reduce flares. My EM resulted from idiopathic neuropathy.

Jump to this post