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.

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. :thud::thud::Dunno::Dunno::tongue::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.:mad:

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!!

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!

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.

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.

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.

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.

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.

Quite a number of us use Trazodone (Desyrel) for sleep. It works very well for me. And most doctors feel it is a relatively safe drug to prescribe with a low side effects profile. Ask your doctor about it.

before RSD I never had issues adjusting to the extreme tmps. from summer to winter. but spring was always my favorite .. spring still holds true but the summer and winter suck.. RSD gets worse after being in the sun. it gets worse after a certain temp or humidity level. the cold as well. only in the 65 -70 degree range m i good. lower levels then..

I am the EXACT same way! its really awful! And this summer hit me hard!

heat quest?
 

My RSD severe in cold weather and seems to be better now in summer except on cold, rainey days, but noticed several of you talking about sweating. I was just dx with RSD in February and since april or so I have had extreme sweating episodes where I am just dripping everywhere...I just wondering if its another symptom of this miserable disorder? I hadnt changed any of my medications when sweating started. I also have Lupus and turning 40 soon so trying figure out if other things applied...waiting for blood tests to check hormones and other labs. Reading this topic and just wondered....

Heat??
 

I have had RSD now for a very long time,it has been so long that I can't even remember when I was dx with it? I must be having senior moment's?? I live in Wisconsin and the winter's here are very harsh to say the least! I also have to walk up 20 stair's just to get to my second floor apt. Having RSD and trying to get my grocery's in is unbeleiveable (sp?) I am trying to find a new apartment to move to on the first floor. Boy did I get off the subject!! The summer's do cause pain also. Right now like all over the place we are having unusually high temp's. Tommorow it is predicted to hit the high 90's or even 100's! I wish I had a pool that I could go to outdoor's,swimming is one of the only exercising that does not hurt me! O.K. I am going to off the subject again. All I wish for right now is to find someone to do a Ketamine tx that takes someone who has T19 and Medicare-Ya Right! I also would like to know if any one on this site take's anti-depressant's? If you do I really need to know which one's cause the fewest side effect's? Please get back to me with some info. I am so depressed I need to go on something asap! Love to all,try to have a painfree day. Breezy55 :circlelove:

My RSD started with hot/summer weather . It gets better during winter.
Since I believe RSD is a nerve entrapment syndrome it all makes sense. It's well known that nerve entrapment syndromes get worse with hot weather...

Bye

warmth better for me
 

CRPS type II, right half of body, 7 years.

Mine gets worse with cold/wind, so A/C can be a problem if it's blowing on me (in car) or too cold. I've only been symptom-free for about 2-3 days in the last 7 years, and that was during a camping weekend where the temp was around 100 degrees and humid. I didn't used to like the really hot muggy summer days we have in the Midwest, but have learned to appreciate them.

sweating is another symptom.. as sympathetic nervous system controls glands... such as sweat.....

Heat and barometric pressure increases kill me. I actually used to live near Sacramento and moved to the Seattle area in part to escape the heat and pain. I can always tell when the pressure starts to rise, even a small amount, as the crushing pain/pressure increase, but overall I am MUCH better now that I'm out of the heat. Very cold days are uncomfortable as well, but this area rarely sees extreme temperatures in either direction. I think we hit 70º today...ahhhhh....

Here's hoping for cooler weather and some relief for you down there!

Hello, I have found that heat actually makes my arm feel more like its on fire. i mean it feels like that all the time but the sun makes it twice as painful. i am a bit nervous about going on a trip tomorrow. im going to fresno and its 108 im use to beach weather i live in oxnard ca. and i wear a sweater all the time....i hate the heat



kristina

Feeling for you
 

I usually am intolerant to A/C but, like you am having GREAT difficulty with the intense summer heat here in western PA :mad:. I developed a 'flare' last Saturday (9-10 days ago) and have been unable to get a grip on the pain & exacerbation of symptoms. I read someone (forgive my forgetting her name) post concerning tracking barometric pressure. May be some real validity to the coincidence. I was diagnosed with RSD in January 2000. I have noticed some relation to worsened symtoms & weather change but thought (as usual) I was nuts.:o After a myriad of treatment modalities, I have setted with MS Contin 60 every 8h and Oxycodone 5-15 mg as needed for breakthrough pain. I have found Melatonin 5mg with & without Valerian to help with sleep issues without hangover effects. Note though, Melatonin for me, seems to have a 15 minute window. i.e. 15 minutes after I take it...the sandman visits and I can't keep my eyes open, I HAVE TO close my eyes & take advantage or it's a missed opportunity. I'm then able to get a couple hours of respite:). So I guess instructions for Melatonin should say "Take med, lay down in quiet area & wait" For me I'm usually pleasantly surprised when I open my eyes & 4 hours have passed. I wish you well