Heat and fatigue - too much
 

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?

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!

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.

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

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.

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.

I finally broke down yesterday after work, took my medicine, and then felt a little better. I've know depression is worse for me when I'm hurting more.

How does that Provigil feel? I don't want to feel all hyper and tweeked out, but I have an entire Summer to get through here and I'd like to be able to enjoy more than an hour of every weekend. Yes, I did more this last weekend then I should have, but it was really Sunday that wiped me out as it was the only day it was hot for me.

I had actually brought a parasol but it was too windy :( I've done the ice in the hat or down the shirt plenty of times. Just always when it's like 100 degrees. Not 80. We're getting a motor home towards the end of the summer, which will be the only way I'll be able to do some of the activities I've done in the past - by escaping often into the AC or going back for more ice packs.

I rarely set foot outside for any length of time in the Summer. Just long enough to feed/water the outside kitties and if I have a doctor's appt to go to. Some weeks I can count the number of minutes I'm actually outside on one hand. My A/C runs almost continuously! :o

What is the temp that maxes you out? I thought I saw in another post somebody said 85. Someone in a blog mentioned 82. Should I just use 80F as a guideline? We have a thermometer in the back yard I can use to test myself with. And I don't know if it matters, but my "normal" body temp is more like 97.6 rather than 98.6.

Anything over 80 outside and I can't function. Inside I keep it between 70 and 72 depending on what it's doing outside. I sleep better when it's cool and I need to use covers. ;)

Over 68 with high humidity will do me in, Inside or out.
I can do 80/85 with low humidity. Here in Ohio, there is
no such thing as, lasting low humidity.:rolleyes: As Kitty says,
I'm an inside cat, in A/C.:D

I find that anything above 80 affects me. I can be sitting outside later at night and once the temp drops below 80 and the sun is down, I can walk sooo much better, it is soo weird. I also found last summer that I can't sit in the sun no matter what the temp is. I can't even sit inside with the sun shinning in on me otherwise I have a hard time getting up and walking. Last year I sat at a state track meet and it was only in the 70's with a nice breeze. I went to get up and walk to the restroom. My husband had to help me out of the stands, I had no balance and my legs didn't want to move---crazy. I always liked going to the pool and laying out. Not last year and I have a feeling this year will be the same.

I am worried about how I will get to the Y this summer. One of our cars has an automatic remote start so I can have the AC already on and the car pretty cool when I get out to it. My hubby is real good about going out and getting the car cooled down and pullling right in front of the house. He will have to make sure I use the van which has the remote start all summer if it is real hot. So far I have done OK. I have a cooling est but not really sure where it is. I wear it to the local amusement park. And dear hubby has never said anything about me renting a scooter for the amusement park. That's the only way I can do it. But I have really enjoyed doing my walking outside. That will have to stop for awhile.

Did you have the remote starter for the car installed on a normal car? How much was it? That sounds like a great idea! :). I recently moved to a place with no garage -- before I had a garage that was insulated to protect from heat so it was relatively cool enough to get into, even in the high summer temperatures. But now with my car parked outside a remote starter would be awesome!