Not going to work for me - at times even the thin strap on strappy thongs is enough to start a flare even on a cold day (mine seems pressure related, too, not just hot or stress related) - but hubby thought of something yesterday I thought may be a brilliant idea for others who's Erythromelalgia is caused by heat only.
Hubby asked what about burns wraps? As burns patients are extremely heat sensitive, too, are meant to protect and insulate without heating. Would maybe be worth a look at for people as desperate for at least some answers, some relief, as I am.
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bengali
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My first reaction is: YAY, give this a go...which surprises me a bit cause my version of EM wants nothing touching the affected body parts at all...except pure shea butter.
I think I know what you mean about EM that's pressure-related...I have several, typically contradictory) EM triggers, though (activity, sitting down for too long, ambient heat, heat caused by covering (clothing, bedding etc), raynauds attacks, time of day etc etc). Basically, for many years, EM management has been a never ending daily juggling act. So I'm all for Thinking Outside the Box!
No, I can't. For me, even a light sheet on them in the middle of our *very cold* winters here is enough to set off a flare. Hate it, as have Reynaud's as well, ranges from annoying to sore; but put on a blanket and holy wow, itchy, hot, burning pain. So not for me, either, just hubby doesn't feel it like I do, doesn't understand as much what triggers it, is only trying desperately to help, and came up with it last night.
So as much as it won't work for me, I couldn't not say about it with the potential of it perhaps helping someone else
Hubby said then he wants to ask the hospital for some to see how I go anyhow though. So ..? Will not argue at all, he wants so much to help and if trying makes him feel better (as much as the idea of something wrapped around makes me anxious yo say the least), then I will if we can get ahold of any. Will update as I can if I can get some..
😊 I think you & I have a v simlar version of simultaneous raynauds & erythromelalgia
And 😉 I think you're right to at least be open to trying these novel approaches...so long as they don't involve "NO NOS" like soaking in water etc
I find it's vvvvv hard for anyone who doesn't have simultaneous RP&EM, no matter how much they care, to understand what it's like...and even harder for them to imagine managing it on & on....day in & day out....all year round...for flippin ever....BUT, 10+ years on from when I first realised my lifelong raynauds had developed a contradictory buddy-condition, I'm so used to this that it's as normal as breathing air...
10 years... I've had the Reynaud's for as long as I can remember. The first active flares for the Erythromelalgia in August (and I consider myself lucky in having a very proactive doctor who recognized very early on what it was); but now all the unknown extras on top of the pain of the regular flaring, so tired too, starting to mess with me a fair bit. The idea of going out even is getting to cause almost anxiety attacks, often bringing on flares alone. I hate it. My kids (and god hope they don't inherit this hell) don't understand, my husband is trying to desperately. I've gone from a fairly active, social, interactive community wise to someone trying so hard for my kids sake to keep them interactive and involved, but unable to do so many of the things I love to do. Gardening, riding a pony, writing (holding a pen half the time is not working), reading (turning pages, holding the book, not to mention the headaches). And do damn tired on top of the pain
Am vvvv I much feeling for you. You are right to feel lucky your doctor recognised your EM. Although I think EM is relatively widespread, especially in immune dysfunction & Connective tissue disorder patients, few are actually diagnosed with EM. my experience is that EM is relatively unknown & unrecognised in the medical community
Yes: I've had raynauds from early childhood too
I'm 63. My EM became severe 10 years ago...and I suspect I had EM to a less severe degree for years before hand. A rheumatologist finally diagnosed EM in 2011
My case is complicated because I have vascular Ehlers Danlos Syndrome + infant onset lupus (SLE) with early onset raynauds + sjogrens + hypogammaglobulinaemia and small vessel vasculitis. Lucky for me the prescription oral combined therapy meds I'm given for all those conditions do seem ever so slightly to take the edge off my EM symptoms some of the time.
I have learned to live with EM ...and with those around me not understanding why I have to do what I do in order to cope with simultaneous EM&RP.....But it feels ABSOLUTELY WONDERFUL to meet fellow-sufferers like you, Lupiknits & others: our understanding is unique
For me, they haven't figured out what else it is - waiting for my first rhumatogy appt. Hospital didn't know where to send me at first when my GP contacted them so they sent me to dermatology. Who then literally asked why I was there.. because it had nothing to do with dermatology. So I wait.
But I'm in my low 30's. Two young(ish) kids and a husband with a myriad of progressive health issues himself. I can't afford this. I need to be there, need to be able to do what I had been. And I can't. I simply can't do it all. And I feel like I'm failing on top of everything else.
Courage: this is v hard, but you've found this forum full of vvvv capable, caring people of all ages & backgrounds who really understand & are here to help.
Sounds to me as if your case involves some form of Connective tissue disorder & Immune dysfunction....many here are diagnosed with one form or another, not just lupus
Just everyday things are a massive struggle often. Trying to wash the dishes ATM for Pete's sake, and a simple 10-15 minute job takes so long, the act of even warm water on my hands for any length of time setting off hugely intense flares. It's so frustrating, such a battle for the simplest of things.
I am so glad I have found this forum, though, like you said, so many people, often experiencing similar problems, to help you through, not feel so alone With it all. Thank you.
You've find us AND you've got the health system taking you seriously enough to refer you to secondary care for investigations: 2 big achievements! Sending you gentle pats on the back & hugs 💁🏼
Very interesting. My feet are really bad at the moment. Red and burning, then dead with the Raynaud's. i have increasing problems at night. Get into bed with cold feet and socks, later kick off the socks, then alternate with feet outside the bed, sleep, wake up with feet freezing, feet inside the bed. Repeat all night.
I can't wear socks at all, the only exception being extremely thin ones very early morning if it's extremely cold, even then I might get half an hour or so. No blanket, even thin sheet over feet at all. Often a thick bunch of quilts to elevate my feet at night (better than laying with my feel propped against the wardrobe!). Electric blanket on, need (!!) The blankets between my legs and the warmth, as otherwise flares start straight away with a vengeance. I hate the cold hands, feet, but so much better than the alternative
Hi again...just in case you haven't found this already, here is the link to the most comprehensive & up to date EM info I've found to date (simultaneous EM&RP is covered):
Thanks for the link coco. Reading it makes me suspect I've now developed EM with my RP. Sigh ..... will be posting about my rheumy appt later ...
Yes I have exactly the same problem only it presently only affects my finger pads and tips visibly. They are either burning red with cold or shrivelled and waxy (likd memory foam) with cold. Add some Pompholyx eczema onto the tips and I have a situation I'm failing to manage in any way at all! Gloves are necessary in cold weather or even a mild breeze can trigger a Raynauds attack if gloves too thin. But on a lovely warm spring day like today they go into melt down and I'm either craving cool surfaces to ease them (even the fridge has appeal at such moments) or I crave heat. The fluctuations in the appearance of my fingers reflects the extremes my disfunctional thermostat is taking it to. Touching anything is painful but impossible to avoid.
My main discovery has been about keeping my core warm enough but that's as far as I've got. I hate tight clothing or gloves as this seems to act as trigger too. My fingers look like they are covered in small burns so maybe your husband's idea would be good for those who only suffer from EM without the RP? Great that he's thinking it through so hard too.
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Burning scalp
Burning Feet waking me up
Burning/tingling fingers
Burning Toes!
