So it’s 10pm and of course I cant sleep because my hands are flaring so bad. Does anyone else’s hands look like this right before bed. I hold an ice pack on them but then after they seem to start to cool the ice pack is warm and the hands start right back way worse flares at night time.
I used to keep a cooler next to my bed, ready to go with frozen water bottles or whatever else. Just an idea … I’m not sure ice packs are the best way to go though, but do understand the need to get to sleep.
Do you get rebound from the ice packs at all?
Hope you are able to fall asleep soon xx
I dnt use ice packs all the time because I do rebound but when there really burnin all I can think of is keep them cool. Ya as you know I’m sure the back and forth is constant I’m trying to cool them but then when that wears off my hands heat up again, if I’m lucky though sometimes it will calm it down at least enough to fall asleep. The one dr also said I have Raynaud’s so thats another issue so it’s always back and forth on and off all day but heat worse at night. in comparison I would rather have cold hand then hot flares for sure.
I’m so sorry you’re going through this. I AM TOO! About a year and a half ago I started graduate school to get my master’s degree. I quickly became sick and was subsequently diagnosed with lupus and fibromyalgia. At the same time, my hands became very red most of the time, and I had to walk around with frozen water bottles or touching anything that was cold metal. It was driving me insane! I’m finally on a cocktail of medications that have helped a bit. However, at night I had to purchase a pillow with cooling gel on one side. I sleep with my hands under my pillow (I sleep on my side) and the cooling gel helps. I have to have my ceiling fan on and keep the room cool. I can’t have any alcohol as it immediately sets my hands off on a wicked, burning flare. I’m still learning how to deal with it, and I frequently have to walk around with my hands up in the air like I’ve just scrubbed in to perform surgery on someone. It really helps to keep my hands up in the air. Thankfully I don’t have erythromelalgia on my feet, but I do notice my knees flare as well, though not as bad as my hands. I feel your frustration. If I can’t use my frozen water bottles, in a pinch I can apply capsaicin to my hands where I flare and it helps a bit.
Its all just very frustrating when you cant ever feel normal and as you know when our bodies are at war back and forth from cold to hot this just seems never ending. I thought to that I may have an autoimmune thing with all this plus I seem to catch everything under the sun, but last year the rheum dr said that was neg. Sounds like you are going threw a lot of stuff to I’m so sorry for all that your dealing with as well. It really is nice to know though that others can relate to you when you feel alone in this. I will have to look into the gel pillow for sure because my face is also terrible at night whatever side I lay on burns up and fast and I flip back and forth all night but I cant sleep on my back. I to cant have even one or two sips of wine and my hands face and chest instantly turn bright red and flare. Sometimes my hands are speckled like that when I’m in between cold and hot but mostly they get solid pretty fast but I have had 3 fingers burning and other 2 not do you have this also?
Sometimes I’ll have 1 toe go and nothing else. Then one toe on the other foot. Then 3 toes or all of them. Then the whole foot. It’s like watching a Christmas tree. And all while I just sit on the couch doing nothing at all. So yes, I get the same stuff with just the EM variation but mine are with toes instead of fingers. My fingers do turn reddish and hurt some, but never like my toes. My toes turn purple during bad flares. It’s nuts.
it’s so true great example lol. With the Raynaud’s I thought I was supposed to have the death white but that doesn’t happen it’s more like spots. But my mom has Raynaud’s and hers is literally the death white and she has to run warm water on them multiple times a day. Where as yes mine will feel freezing at times but the cold doesn’t compare to the heat flare and hers is worse with the cold.
I keep Gel packs for when my hands and feet flare up. I keep mine in the refrigerator since we’re not suppose to apply frozen things when we have a flare. Hope you feel better! The best of luck.
Hands, feet etc! I just got diagnosed Dec 14, 2017. But this has been going on for years. It just started getting really bad this year! It overtakes my whole body.
I dropped the house temp (and it winter.). I can’t wear anything with selves longer than 2 in from my shoulder, only light weight materials, my feet are constantly giving over heating which rules my body. I can’t wear my hair down or I over heat. The doctor said it’s my small fiber and larger fiber neuropathy getting worst! I can’t wear socks, I am in summer shoes . Nothing but good times!
Ya I’m in Arizona and everyone knows how freakishly hot it gets here. It’s almost torture just getting from the house in the car when temps reach 115 117. But it’s winter here so it’s about 35 at night which is nice I have all the doors and windows open I’m freezing out everyone else but then at the same time my raynauds makes my hands and feet freezing and then it’s just a back and forth fight with my body. When I go to bed I have an industrial garage fan lol and the ceiling fan on and my hands and face still flare what a life we are all living.
I have the Raynaud s too! My feet so cold once I lay down to sleep! I can’t hold my body temp, so at night when I sleep I get cold! Summer and winter, I have two quilts on my side of the bed! With my fan on!
Biofreeze works really well for me on my hands. I use it every night and wouldn’t be able to get off to sleep without it. I Rub a 1.5 cm diameter globule in just before going to bed. It leaves the hands feeling a bit sticky but nothing gets rubbed off onto bedclothes. I don’t have further issues with my hands during the night but get woken by my feet flaring. I get out of bed, use Epaderm (UK) prescribed cream to moisturize my feet and move to a cooler area of the bed.
Bio freeze huh I have some of that here I use it on my neck so I will give it a try on my hands as well. Thanks for the idea
Ladies, leaving Las Vegas at my specialists request because the heat causes a lot more damage than just discomfort. My situation maybe slightly different, I have Secondary EM from excessive use of 5-FU chemotherapy. Basically they chemically destroyed my immune system and the experts for Early Onset Toxicity is Cedar Sinai. So Los Angeles here I come.
Across the board though it is highly recommended that you do not live in hot weather states if possible. EM as you know becomes acute with heat. If you must live in these conditions I would suggest a small room air conditioner to keep your temperature comfortable without worrying about an outrageous power bill.
Best of luck to all of you!