[catra121]

So...it's been two weeks straight of record highs here in the good old Chicago area and I am loving it. After so many months this past year trapped in the house I am enjoying just being outdoors, watching the new flowers blooming, taking walks with the dog, etc. And the heat feels so good for my RSD.

My problem is...and I have been noticing this for the past couple weeks as I have spent more and more time outside enjoying the weather...by the time evening hits I feel incredibly achey, weak, lightheaded, even worse headache than normal, and my heart is beating a million miles a minute (seriously...checked my heart rate and it was 168). Now...I've had all of these things before and they were all related to the RSD. But now I am seeing a direct correlation with the time I am spending outside.

So this morning I had an epiphany and read through the information for the Clonidine patches I started in January. It looks like this may be the culprit because it cautions these symptoms in hot weather. Figures...what feels great and makes me happy is also making me sick. Nice.

Anyway...I was wondering if anyone else has experienced this and if there is anything other than not spending extended periods of time outside that I can do to minimize the effects. Obviously a lot of techniques for "cooling down" probably won't work for me because of the RSD in my entire upper body and sensitivity to cold...but I figured I would ask in case you guys know of anything that might help.

If not...well...I guess I will have to limit ourdoor excursions to early morning and evening when it's warm but not necessarily "hot" outside. That would be sort of a bummer though...but I can live with it if I have to. The clonidine patches have been a HUGE help with some of the most debilitating symptoms so stopping it is not really an option.

Thanks everyone. Hope you all are doing well and hopefully have some nice weather to enjoy too.

[ballerina]

What an absolute bummer! You have had such a great time outside with your pooch. What would happen if you do your walking in the early morning and take a rest in the shade in the preserve where you walk, maybe do some cross stitch. That way you would not get cooked in the sun but could still enjoy the lovely spring.

Wish I had more ideas.

[alt1268]

Catra

I am also on the clonidine patchs. Although I am not experiencing these side effects (yet) I appreciate the heads up. You may have to stay out of the mid day sun and or limit activity during that time. I have found I still take a nap mid day. But am enjoying the 70 degree weather. Hope you have better days.

[kathy d]

Hi Catra,
I know what you are talking about with the patches scenario. I had used fentanyl patches for five years and was NEVER able to sit in the sun again or be the slightest bit warm during that time. It was hard for me to even take a shower as right afterwards I would fall asleep due to the fact that any time I got warm (like from the shower) the patch releases more because of the heat and if it releases too much quickly you can have a heart attack (not good). I had to stay away from heating pads, space heaters, or anything that would cause me to have an increase in body heat. It stinks but now after getting off all pain meds for over a year now and finally being able to sit up for longer periods of time I am really looking forward to getting some sun this summer. Of course end of last summer...I actually wore shorts and went to a nephew's party and was made fun of because my legs were soooo white and thin (I had suffered severe atrophy the year before and it never came back). It was actually painful to have shorts on and it was probably the second time I have ever worn shorts out in over five years due to skin sensitivity. So, now I still wear long pants and long sleeve shirts with a light jacket during the entire summer. It has to be about 100 degrees here in the NE PA area before I can even wear shorts or short sleeved shirts. Who knows...maybe I will live on the edge this summer and even go in the water when it is really hot outside lol. Good luck with the patch and start to maybe keep a journal of when you experience these problems so that you can maybe see a pattern to it. Like you said you may have to go out early am or late evening to avoid the heat of the day. Best of luck to you.
kathy d

[catra121]

Thanks guys. I think I will just try to stay out of the worst heat in the middle of the day and just go out in the early mornings and evenings when it's warm but not HOT. There are certainly things I can do inside and maybe I could just open some windows or something to let in the fresh air inside the house and let the sunlight in (provided it doesn't make the house hot as an oven...my boyfriend would NOT like that...lol).

I stayed inside all day thursday and friday and I seem to be feeling better. I still have a bit of a headache but hopefully that will fade if I continue to take it easy. I mean...I ALWAYS have headaches...this one is just different than normal (almost like in ADDITION to the normal headache I now also have this horrible pressure added).

Thanks for the suggestions and thanks for sharing your experience Kathy. I wasn't sure why heat would have that affect but what you said makes sense. If the patches are supposed to control something and only release x amount each day and suddenly out of no where you are getting overdosed because of the heat...well...I can see where that would case some issues. I have continued to wear jeans and long sleeve tees when I am outside (and a scarf and gloves if I am out in the early morning when it's still in the 60s or if it's windy) because I am very sensitive to any sort of air movements and such. But the sensitivity in my hands and arms is improving with the tDCS so I am hoping that tee shirts are in my future soon...at least on mild days. I have been keeping a daily journal and that's how I made the connection with the heat/amount of time I was spending outside and the new problems. Oh well...at least I know now and can try to work around it.

Take care everyone.