Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-21-2012, 05:02 PM #1
lovefamilypets lovefamilypets is offline
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Confused Has anyone experienced worsening of RSD from heat/summer?

Hi All!
I'm back; I was missing in action for a while. I did an 8 week intensive functional restoration program, and then continued the treatment at home for the last 5 months. I was actually off my sleep medication and sleeping better; although, nothing else had improved much. My function was very slightly improved; however, not enough for me to be able to take care of myself or work or run errands.
Then about a month ago, all the sudden my symptoms got a lot worse. I've had RSD for 4 years now and I just moved back to the Sac area. Before that I was in a cooler climate. I was wondering if anyone has seen their RSD flare up really bad with the summer heat? I currently am up all night and after 3 weeks of not sleeping, I went back on the sleep meds which gives me a couple hours of sleep here and there. I'm just so confused. I don't understand why the bad turnaround. The only thing that has changed is the heat. It has been 90 - 107 degrees here in Sacramento the last month. If anyone has experienced something similar, I would really like to know. Also, if you have a similar experience have you found anything that helps tolerate the heat? Besides moving of course since I can't afford that.
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Old 06-21-2012, 05:18 PM #2
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Default

I don't have pain from the heat it's the air conditioning that's killing me. But I don't want to be without it either.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 06-21-2012, 05:42 PM #3
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Frown heat

My RSD is always bad in summer when it is hot out i do not look for summer i hate it. can't wait until fall an winter.
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Old 06-21-2012, 06:10 PM #4
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Default Cold...

The summer heat doesn't seem to bother me. Like alt, it is the A/C. Cold winter air and too cold air conditioning bother me a lot!!
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Old 06-21-2012, 06:34 PM #5
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I actually do much better in warm temperatures. I always look forward to summer.

But as you can see, it varies greatly. This condition is so UNIQUE!
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Old 06-21-2012, 06:42 PM #6
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The A/C is what kills me in the summer...but I enjoy being outside in the warm weather. Unfortunately, since I went on clonidine patches I need to be VERY careful when I am in the heat. I get horrible headaches, dizziness, nausea, and my RSD symptoms get all wonky. Apparently, in the heat, the patches release more medication so instead of regulating the blood pressure it goes all wonky and thus my RSD symptoms flare. I'm not happy about that but the patches are still a must so I just have to be careful to balance my time outside with my time inside where it is cooler. Are you currently taking any meds that could have side effects with exposure to heat?

The other thing to consider is whether or not you are comfortable with the temps. Not just in your RSD areas but everywhere. I know there are times when the heat helps my RSD but it makes the rest of my sweaty and uncomfortable. When I'm miserable like that I have a hard time sleeping or getting comfortable. Lack of sleep stresses me out (both physically and emotionally) and then I get a flare usually.

Changes in the climate can be an issue too. It's not always just the temperatures but the humidity levels too. That could be causing some issues as well.

And unfortunately...RSD is just wacky so it could also be any number of other things that I can't think of right now. Did you move recently? The stress from that or even just from the therapy could also be messing with your system. Who knows? All just guesses on my part really based on my own experiences.
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Old 06-21-2012, 07:41 PM #7
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Default heat

I find that big temperature swings bother me. From 90 degrees to 107 seems to be a big swing to me.

Are you keeping a pain diary? I've found that if I check the days that I have the most pain they correlate with the swings in the barometric pressure. I was recording the days I felt the worst and then went back and googled the barometric pressure on those days for my area. They seem to correlate. It would be interesting to see the temps on the days you feel the worst too.
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Old 06-21-2012, 09:15 PM #8
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The heat kills me, but the saving grace is......water !

I'm in Massachusetts, so the only months for swimming are June, July, and August. Floating around (I have a GREAT floatie chair), reading a book, is when my body feels it's best. I don't enjoy feeling worse in the heat, but knowing I'll get a couple of hours a day or a week (when I can get to someone's pool, the beach, or a pond) is what I LIVE for.
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 06-23-2012, 01:37 PM #9
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Im having ALOT of trouble with the heat! I cant find a fine balance, winter and summer are awful! Winter makes my pain terribly worse and summer is making it so i cant cool down even with A/C on and the A/C affects me aswell. Its very hard for me to go from my house to say a grocery store because the temps are going to be diffrent, and so everytime i have to go from a diffrent place to another its just really really bad! And im clueless as to what to do. The "best" thing i have found is if i put my north face jacket on a few min befor i walk outside, it not only pretects my arms from the sun but it also gets my body ready for the heat and then because i get over heated immedetly when i walk outside and then i go inside and its the total oppisate i get to cold so i then have my jacket on to pretty much cover all the temp changes i have withn those times.
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Old 06-23-2012, 03:41 PM #10
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Default Thank you all for sharing with me!

Thanks everyone for telling me about your weather experiences. I guess I'm not the only one who flares up with changes in weather or heat My doctor seemed to imply that I was a weird case since he said most RSD patients flare with the winter. I told him I seem to flare with both, but the heat seems to be even worse than the cold.
I didn't think about keeping a diary to check for changes in barometric pressure or humidity. Thanks for the tip! I'll keep trying the pool; I just can't be in there with full sun since direct sun on my skin seems to flare me up immediately.
I really wish I could blame it on moving recently or a change in my routine or meds, but the fact is I haven't done any of that.
I've just got to pray that I get through this flare. How long can someone go without sleep? Sometimes I feel like I could die from sleep deprivation; I'm just so exhausted. I keep trying meditation and different sleep meds, but nothing seems to be helping. Does anyone have a sleep aid that really seems to work for them. I've tried Melatonin, chamomile, ambien, benadryl, and ativan.
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