[Rabbitoh36]

First post so a big hello to everyone in the forum.
I’ve never met anyone with CRPS so it’s good find this forum and know there’s others out there with same condition
I do have a question but I’ll give a quick rundown on how my CRPS come about.
I was diagnosed back in 2009 with CRPS in my right ankle after i fell over and rolled my ankle.
I had my ankle X-rayed after the fall and had no broken bones but it was swollen, black from bruising and terribly painful and from the swelling i had no movement at all.
At the 5 week mark i fell of my crutches and put my body weight on my ankle, felt pain like never before. Got a CT scan which showed id broken 3 bones and had started to develop Osteopinia.
By this time my ankle was doing strange things, felling icy cold and sweating at the same time, turning purple with white dots.
I was lucky the specialist picked up on this straight away; As soon as he looked at my ankle he said you have RSD.
He sent me to Physio who also seemed pretty knowledgeable about CPRS, It took another 8 months of pretty intense physio to get me to where i could stand again, Had to learn to walk again as it was like I’d forgotten how.
After 14 months from initial injury i went back to work but with a painful limp, 5 years later i can walk with no pain at all but I’ve lost a bit of movement.
Still get the icy cold feeling and sweating.
If i try and run or put any strain on it, it’s followed by a couple days of pain but i feel I’m managing the ankle well and it’s not interfering too much in day to day activities
Over the years I’ve developed a heat intolerance, Not necessary in my ankle it’s something that’s affecting me as a whole, I’m sensitive to sun light, also find myself turning lights off in side as they seem to make me hot.
My entire body sweats as if someone’s hosing me down. The last couple summers I’ve pretty much had to stay indoors and spend allot of the time in bed totally exhausted.
I’ve never associated this with my CRPS before as I’ve had some thyroid problems and attributed the heat intolerance to the medication i was taking but over the years and more tests then i can poke a stick at, The doctors have come to the conclusion that it’s not Thyroid related and I’m pretty confident with this diagnoses as well.
But after all the tests they still can’t come up with any reason for the heat intolerance
I’ve started writing down a timeline to try and figure out when this heat intolerance started. I can go back to summer when i was stuck at home with my initial ankle injury but i guess thinking back now i didn’t think too much about it the time, the pain i was feeling in my ankle was pretty much occupying all my time.
So my question is has anyone suffering from CRPS had this kind of heat intolerance before? I know that CRPS is related to the nervous system and so is the way the body regulates temperate, do they go hand in hand i really don’t know but i haven’t been able to figure out any other reason what’s happening.
Thanks for reading sorry if its a little long, hard to get all the info in one post

[Kitt]

Welcome Rabbitoh36.

Someone will be along to help.

[RSD31]

Hi I have heat problem with my rsd all the time I hate summer have to have ac on and set at 70 degrees my best time is fall an winter all I wear for a jacket it like a wind breaker because I'm so hot, my wife can hardly hug me because of all the heat I give off, so good luck stay cool.

[Adalaide]

I have actually developed a full on heat allergy over the last few years. If a particular area on my body gets exposed to too much heat, such as a too hot oven on my arms or the sun on my legs I can get a rash and even break out in hives. If I get too hot overall I'll have a full on allergic reaction. I start to get lightheaded first and I can feel my blood pressure drop. Then if I don't get cooled off fast in the next 2-3 minutes I'll start to have trouble breathing. I won't leave my house in the summer if the temp is over 80 or so without a lunchbag full of ice packs and unless it's a dire emergency I never leave my house between noonish and about 5 or 6 in the evening in the summer.

And this all started the first summer I had pain in my ankle. I never really connected the two. I do have other health issues. Celiac disease and CRPS topping the list, but a lot of other little things that just compound to make my life difficult. I've wondered often if my heat problem is related to my issue with high histamine foods, but that has been slowly resolving while the heat problem gets continually worse. I don't have any advice, just wanted you to know you aren't alone.

[eevo61]

Me too and also my scs makes it,worse , cold also,affected me gave me pain so I really need an special place to be , where can I found that ???
Welcome and hope you soon feel comfortable with us, ,Jeiska .

[Imahotep]

Heat and light intolerance waxes and wains for me. I often don't notice that I feel bad when facing direct sunlight but it's quite common for me. It's hard to maintain a temperature that's comfortable even under ideal conditions and warm days can lead to be quite uncomfortable.