So the weather has finally broken in TN, and it’s actually 60+ degrees. I thought this would bring me great relief, but my hands are flaring terribly. They are bright red and white and my joints are killing me (I get swelling with flares).
Has anyone else experienced this? If so, does it get better after body adjusts to cooler temps? Heat is my worst trigger so I’m a little confused.
I seem to be having the same issue. Usually heat causes more problems with flaring but this morning which is a very cool morning I’m having flares Usually in the winter I have flares when I go from cold outside into over heated inside but this morning there wasn’t a drastic change in temperature. Confused…
Could it be Raynauds? Maybe not but just wondering as that is affected by both heat and cold.
Sorry to hear you’re having flares too, but it’s always nice to know I’m not alone I’m starting to think it’s temp changes and possibly humidity that are causing my flares (along with heat of course).
Thanks for the suggestion. I don’t think it’s Raynauds…cold always helps my flares. It hasn’t really been cold, but I have experienced flares with some changes in temp…but I’m starting to realize now these temp changes have also been associated with high humidity. So maybe that’s the other culprit? EM is so confusing and always seems to surprise me…I’m sure you can relate
Hi, my EM doc in NYC has told me over and over than the changes of season hot to cold. And cold to hot is often very difficult to all his EM patients. I guess since we have problems with body temperature regulation (damage to or faulty autonomic nervous systems) that the sudden changes are hard for us. I think we adjust eventually but the change is hard. After all ,y “normal friends” have issues with change of season temperatures it’s just that they don’t have pain.
All the best,
Thanks for the reassurance. The changing of the seasons has caused me to stay in a flare, but I’m hopeful it will stabilize as my body gets used to it
Thankfully, my primary care doctor has referred me to a new rheumatologist and a pain specialist, both of whom were listed on the TEA website. Maybe…just maybe…one of them will know how to better treat my EM. I love my hematologist but he only knows how to treat secondary EM with PCV, which I don’t have. Crossing my fingers
I spend 1/2 time in Texas and 1/2 time in Florida - very different climates. One thing I do know is that any form of weather change (particularly cold fronts), I flare quite a bit more and the tingling in my hands tends to get worse. Once the front is through, things seem to settle down a little. Until the next front… I think drastic changes in humidity plays a role too. My neuro said thing like weather changes, (ladies - menstural cycles) and stress certainly play a role in the severity and number of flares. Just my two cents and what I’ve experienced.
I have learned to push through and try not to focus on the flares if at all possible. Crazy enough, wearing think sompression running socks and tennis shoes help me more than anything. While a bit painful at times, overall it helps keep my focus in other places rather than constantly watching my feet and wondering or worrying about the next flare.
My neuro also recommended I continue my exercise regemine if at all possible. Exercising in the morning is more tolerable than the afternoons, but staying active is key.
When I used to “worry” and “focus” on the flares, they seemed to be much worse. Lots of prayer, lots of mental training, and learning my new normal has been key. If I can help or offer what has worked for me, I’m happy to share. Had it not been for this website, I may not be as far along as I am now.
Wishing all of you the best!
Count me in as suffering on season’s changes.
My EM started in the winter, so still don´t know what effect summer has on it. I do suffer a lot when it´s cold outside and i go inside a warm room. Doctor´s appointments are hell. Hospitals are often kept at about 25ºC ( 77ºF).
Thanks for the suggestions and reassurance I’m not alone with the temp changes.
Sorry to hear we have that in common, but thanks for letting me know I’m not unique.
Agreed! Doctor’s appointment rooms are often hotter than the waiting room.
Sadly yeah, you´re not alone! If the temp change is extreme i flare in my face and ears too
How did your EM started and when?
Mine started suddenly in February 2016. I have flaring in my hands and feet , especially bottoms of feet/toes and fingers/middle finger joint. I have no idea why it started, but it doesn’t seem to be going anywhere any time soon.
Doctors seem to think it’s secondary to an auto-immune disease, but they haven’t been able to pin point anything yet.
I also have it in my feet, mostly in my toes and soles, and in my hands, sometimes my ears.
I also have no idea why it started, i´ve been checked for autoinmune diseases but all negative. I do have an extreme low value of vitamine D but i don´t think is related. My EM started two weeks after starting amytriptiline a low dose at night, i stopped the amy but my EM is still here. At first i thought it was drug related but now i´m started to wonder, it should be gone by now.
I also have geographic/burning tongue.