Erythromyalgia or something else/more... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

9,117 members4,450 posts

Erythromyalgia or something else/more? Mast Cell Activation Disorder?


Bit of history first - I've had Reynaud's since a young girl. No other issues related to anything rheumatalogical other than intermittent ulcers rarely until a few years ago.

All of a sudden in the middle of winter whenever I'd hop into bed with the heated blanket on my feet would get burning hot, bright red, swollen, extremely painful. Ended up having to have my feet out, elevated, to be able to sleep at all, let alone not be up for hours with my feet killing me. Eventually the problem spread to my hands, so hands had to be out, on the pillow, too, got to where I couldn't hold my husband's hand for more than a minute or two at all or would start a flare. GP knew about erythromyalgia, put two and two together. All symptoms.s matches, couldn't handle the heat, summer was horrible, face, ears, chest got to where they were flaring too. Managing Reynaud's (and chilblains) other than wiHeadachesing like felodipine isn't an option, gloves, anything other than super thin cotton socks on extremely cold mornings isn't an option either, caused flares.

Had fair bit of joint aches, fatigue, and positive ANA results, so was put in methotrexate and hydro chloroquine he a bit over a year ago.

Fast forward to the last 6 months, my skin always very prone to dryness, is getting more and more cracked. Having more and more issue with easily infected cuts or etc, more issue with scarring (though I've always scarred reasonably heavily), a couple ulcers in my fingers, more and more gut issues, less movement in my fingers, more issues with being able to move my hands, dropping things, numbness and pain in my hands especially, but other joints, as well (hips, kness, elbows, etc.). Headaches, memory issues, just drained, tired.

Skin colour and texture starting to change on spots if my face, as well as spots up my forearms, not just my hands anymore.

SO..... Clinical nurse is thinking likely scleroderma, but since seeing them a few months ago (where we discussed ilopost (sp?) for helping control the Reynaud's),

But last few weeks I've started getting heavy rashes/hives whenever it starts to get too hot, blotchy red, raised patches, hot and god does it burn, particularly on my legs. Feels like an EM flare, but, ?? Face often goes flushed, too, sometimes chest, starting to get some blotches on my hands and arms, too, but feet and hands are usually solid red.

I put a pic up recently, and someone said it reminded them of mast cell activation disorder, and while, yes, I'm mentioning to the clinical nurse who will forward it on, has anyone had any experience with it? Never heard of it before yesterday, but I looked it up and the few photos I found matched, like almost perfectly..

Forgive the bad pics, angles weird, too, but gives you the idea anyhow. And no, the background colour without the raised red patches of my skin isn't usually like that, either, generally fairly pale...

5 Replies

Oh wow, I have to admit to being relieved at seeing your photo showing the EM flares on your lower legs/feet... It's the mauve knees that I relate to also. Over the years I've not found anyone else who also have mauve coloured knees when they're not actually flaring a glowing red. My knees were mauve a good 10 years before the EM kicked in. I wonder if the mauve colour could be a marker for acquiring EM later on?

Have you looked into POTS syndrome?

I have the same discoloration on my knees and legs. I’ve had it since I could remember. It was always more noticeable after getting out of the shower. Just recently I got really sick with burning muscle pain, swollen red and inflamed joints, and a lot of pain. A long with it I developed a burning red rash on my face, chest, and arms. My doctors just look at it and have no clue. They did find I have Ankylosing Spondylitis, and arthritis in my joints, as well as bursitis in my hips, and a few other things but no one has addressed this burning red rash that comes if I’m exposed to heat or if I get upset. Did you ever find out what if yours was Mast Cell Disorder? Thank you for sharing your story!

I feel for you. I’m not sure exactly what it is but your description is spot on to what my suspicions were as well. Some sort of mast cell problem. Whenever they took labs when I looked like this with flares, my allergy cells would always be high. I think I’m allergic to rice - no joke.

It also looks like you have maybe some mild livedo on the leg turned sideways? Ever been tested for antiphospholipid or had problems with blood clots?

erythromelalgia i have it i drop things all the time, can not put my hands in water with out screaming so ask about gabapentin. paraffin wax, probiotics, tumeric with pepper helps autoimmune a lot. pain specialist, rheumatology. see autoimmune doctor and get a second opinion now amlodipine, slidelifil and other meds that can help. acupuncture also can help meditation can help try a hobby to turn down the pain get your mind off it. journal every day. hope that helps julie

You may also like...