[chaos]

I tried to limit my activities this weekend and still ended up with too much and I feel horrible today. Saturday we did a trip to the redwoods and the beach. We didn't walk far in the redwoods because my bro-in-law had flip flops on, so at least I didn't have to use me as the excuse. Started walking uphill and I was out of breath way too quickly. I packed a lunch so we ended up really just eating and walking around a short bit and left. This ended up well. We then drove to the beach, which was not far at all. I watched the kite surfers for a bit. Walked to the actual ocean part of the beach and it wiped me out too, my daughter got her jeans all wet so it was a good excuse to go (yay not me again). We went home, got her changed, then went to a party. I was up way too late, but I got to see friends. I didn't have to do any driving at all, just sitting.

Then Sunday we went to the Pirate Festival. I checked the weather and it said yesterday's high was only 83 degrees. I was dressed well and wore flips flops. I still totally overheated. We were there maybe an hour and a half and I had to step out, go to the car (that thankfully was parked very close) and rest for a min and take some medicine (smoked pot, which helped a ton and got me up again). Went back in and found every excuse to go into the shade as I could. I had even put lidocaine on the bottom of my feet. But my feet ended up so sore, my legs were dragging, we were there not three hours, and much of that was spent talking to friends (we're faire geeks). It didn't help that my daughter (who has high functioning autism) had a big meltown around lunch.

Today I just want to cry. Thankfully the bosses are in Hawaii. I have gotten up to work on files and can only do a little and have to come sit back down again. I don't have any meds I can take at work specifically for pain. I saw the pain doc recently and as long as I smoke pot, she can't legally give me opiates (she says, stupid federal laws want me to be addicted to pain pills). I know pain makes my depression worse. DH said to come home early, but I can't because we have a new employee and I'm in charge of the office today. I'm going to get home and crawl into bed with my Walking Dead book I need to return to the library at the end of the week. I don't want to be on my feet any more than I need to.

I have never been so burnt out on the heat before. I know how to cool myself when it's 100 degrees. It's ridiculous to be like this in 80 degrees. Is this going to always be like this? The neuropathy made the winter horrible, my feet always hurt a ton from the cold. Now the heat. I've always considered this weather to be perfect. Do I just need to be in a 75F bubble? Or do I just always need a day after doing any event for rest? I have done that in the past, taken a day off work on Monday if we go camping or to a weekend event.

And it wasn't like this last Fall when the PN just started. The heat didn't bother me at all. I started getting some symptoms of autonomic neuropathy over the Winter. I've read about the heat intolerance with MS much more than PN. Does it get worse? Or does it just happen and then it is what it is? Anything that can help it?

[used2party]

I had this same problems about a month ago. When i was first DX i didn't have problems like it, but this summer, it has kicked my butt!

I countered it by avoiding the sun, and staying in the shade as much as possible when I went on my trip, but it still hit me hard.

Few others on the forum suggested cooling vests, have yet to try but they sound very promising! Hope you feel better!

[Natalie8]

I found that Provigil made me feel like a pre- MS person if I had to be out in the heat. On days I know I will be outside when it's warm, I take it. It was so nice to feel "normal" again!

It won't help with pain but energy.

[jprinz99]

not a solution, just my observation-

some days I seem to be handle warmer temps better than other days. Perhaps it is simply just being a little worn down + heat= kaplooey

Other times it takes a higher temp to wipe the snot out of me. Heat + humidity also seems to make me wear out a lot faster than one element alone

[Natalie8]

Just saw this on how fatigue for MS patients is just different.

http://multiplesclerosis.net/living-...its-different/

[SallyC]

Originally Posted by Natalie8

Just saw this on how fatigue for MS patients is just different.

http://multiplesclerosis.net/living-...its-different/

Excellent Nat, Thanks, sending to fam & frnds.

[Kitty]

Originally Posted by Natalie8

Just saw this on how fatigue for MS patients is just different.

http://multiplesclerosis.net/living-...its-different/

That's a great article, Natalie. Whenever I try to explain to others how I'm feeling I usually end up saying "I can feel it more than you can see it" and hope that suffices. Usually, it doesn't and I'm confronted with lots of suggestions that I've already tried a hundred times. I know they're just trying to help but it gets old really quick.