[elanor]

I know that heat makes the myasthenia worse but does anyone else ache all over after you have been overheated? Just getting in and out of the car when it hasn't had time to cool down makes me overheated. After I get inside and sit down for a while I notice that I just start to hurt all over. Rather like working out and straining all my muscles at once.

[AnnieB3]

Elanor, Welcome.

Are you feeling any better? Have you cooled off? Have you had lots of water? Heat exhaustion, if you have it, can be very serious.

If you aren't better, go in. It may be MG but don't assume that.

Also, when hydration changes, so do electrolytes. It could be that your body is more sensitive to changes in electrolytes like potassium due to the MG. Your primary doctor could check that too.

Body aches can be caused by a lot of reasons, including a vitamin D deficiency. Again, it's worth seeing your primary doctor about. I hope you can figure out what's going on.

Annie

[erinhermes]

Hello and welcome to the best site for MG! You are going to meet some really amazing people here!

I know exactly what you are talking about.....I spent a few hours in the heat 2 days ago and am paying for it now! I always bring my cup of water to stay hydrated but the heat itself was unbearable. It literally made me ill. My face and body swelled, everything hurt, it was (and is) awful.

THis may sound like a goofy question, but do you have anyone to cool your car off for you? Are you on prednisone? I have a love/hate relationship with it; on the one hand it DID save my life, but it has caused just about every side effect you can imagine. If I could do it all over again, I would do it the same way, but it still can be hard.

If you don't mind me asking, when were you diagnosed? Do you have a support group? I was dx'ed March of 08 and had my thymus removed in April of 08. It has been a wild roller coaster ride, but has made me appreciate my family and friends all the more........

In the meantime, please try and listen to your body. Avoid heat if at all possible and stress............

Hang in there!
Big hugs!
Erin

Originally Posted by elanor

I know that heat makes the myasthenia worse but does anyone else ache all over after you have been overheated? Just getting in and out of the car when it hasn't had time to cool down makes me overheated. After I get inside and sit down for a while I notice that I just start to hurt all over. Rather like working out and straining all my muscles at once.

[allen L]

Ive had a few lengthy discussions with my neurologist about this.
Im suffering severe leg and hand cramps at night after spending time in the heat, and have pain in so many areas.
He doubts its the MG. He says it doesnt take much to dehydrate in 85 degree temps if youre walking or moving around. and its been in the 80s or higher all summer long in the north east.
He tells me to double my fluid intake and maybe take in a sports drink instead of just water to supplement what is being wasted out.

[sugrkiss]

I am taking Vicoden everyday abput 6 tabs a day to cope with this type of pain....Mine started at night in my legs (we thought it was from Restless leg syndrom) but slowly it moved into my arms, neck and back as well. It's a really bad aching like I've been excercising...mine gets worse as I get weaker and need more meds, and then it doesn't go away till I take pain meds. I'm sorry your experiencing this. Keep us updadted on your condition! I hope this finds you strong and well.
Love Jessica

[elanor]

You all mentioned staying hydrated and that is something that I know I could do better on. I drink a lot at meals but not always in between and I've noticed that around 8:00 p.m. I feel very dehydrated. I try not to drink too much after supper because of having to go to the bathroom a lot at night but am going to have to work on getting more in during the day.

I was DX'd in September 2009 and am only on mestinon at this point which is good because I take a slew of medicine for migraines, anxiety, fibro, depression, Graves, menopause, and I feel like I'm leaving something out but can't think what. That should be enough wouldn't you think. Ah, I remember, chronic fatigue.

Anway, this heat this summer is just killing me. I've never noticed it being quite this bad healthwise before. The extra fatigue it seems to be causing is really hard on me. Just running simple errands like to the library, pharmacy, and store requires me to rest for the rest of the day.

I just received a favorable decision for Social Security Disability which is a blessing because I was going to have to try and find a part-time job w/o it. I basically retired from teaching last year due to health. Now I can just spend time trying to feel better so I can enjoy my family more.

[AnnieB3]

Elanor, Congrats on the social security, sort of. I know I'd much rather be working.

Has anyone checked your B12 level? Don't assume the fatigue is only MG. I think a visit with your primary doctor is a very good idea. Maybe go over the meds and see if any of them are interacting to cause a problem. Hydration is so very important. Maybe your doc can check your urine and serum osmolality to see if you are properly hydrated.

http://www.rnceus.com/renal/renalosmo.html

I hope you will feel better soon.

Annie

[dog lover]

Hi,
I was dx'ed in July 2009. I can tell you this Summer the heat has bothered me like never before. I have always loved Summer but this year have been looking so forward to cooler temps. As for getting overheated and having aches, YES I have the very same thing. There are days I ache so bad I can even feel it in my toes. It makes it very hard to go to sleep when everything aches. It started in my calves, ankles and feet but the last week or 2 I am having more back and neck pain too. I am seriously starting to wonder if I have Fibro too. Hopefully the cooler weather will bring us some relief.
Kendra

[Annie59]

Yes I do have this same thing. It is one of the things I have to 'forget about' when I try to get to see my grandkids. When I get home and sometimes late in the visit it startes in. I hurt all over just as you explained.

Getting too hot at nite has been a problem for me recently. The weather changed here in midwest. Rather than my body being cool at nite from sleeping near the AC cranked up I am not. I wasnt prepared for the transition. I am a burrito sleeper. I need to be wrapped up. Of course this doesnt work well if its warmer in my bedroom. This overheating at nite last few nites has me surprisingly weaker all day.

Annie59

[Tbarney]

I too have had bad tired achy feet this summer. I started wearing orthotics in my shoes and compression socks. I can really tell a difference.