Heat has brought on severe muscle aches/exhaustion, near constant sweating

[MTRJ75]

So there I was, feeling like I was making progress, doing some of my own food shopping, more housework, occasionally visiting friends by myself for the first time in years...and then the heat hit. 

As soon as we had a few days above 85 degrees, I'm nearly constantly drenched in sweat, but that's not all. The heat seems to have brought back all the deep muscle aches and exhaustion. And it's a double whammy because if I try to use these exhausted, aching, twitchy muscles, the sweating gets even worse. 

Has anyone found a solution to this? It's gotta be some kind of mitochondrial/energy production issue, right? And then maybe SFN that's causing the drenching, really uncomfortable sweats. I can sometimes be drenched in sweat with cold skin and goosebumps at the same time! I'm almost at a point where I'm pretty much on my own now, so I gotta figure this out. 

[Pistol]

2 hours ago, MTRJ75 said:

I can sometimes be drenched in sweat with cold skin and goosebumps at the same time!

Yes, I know this. This happens to me right before I pass out. I wonder if it might be a drop in BP? I - too - do terrible in heat, I cannot tolerate it without a full flare

[MTRJ75]

No, I don't feel lightheaded and this can even be while I'm reclined. My BP has actually been running higher (too high) the last six months or so. But it is a bit similar to the vasovagal issue I had with the blood draw that one time. The profuse sweating at least. 

[MTRJ75]

Went outside to pay the guy who does the lawn. Bright, sunny, low 80s. Was outside for less than 5 minutes. Was feeling fine (or as fine as I get, except for allergies). 

Came back inside, sat down, my nervous system immediately acted up. Blurred vision, sweats, skipped heart beats (though heart rate was in low 80s). Every single muscle in my body cramping. 

Got up, walked around. Was okay walking around. Took some electrolytes. 

Immediately upon sitting down again, nervous system went kaput again. Feels like a blood flow issue. Massive muscle cramping, Feels like there's no blood in my arm. I feel a tingle going up the next (like there's no blood flow). 

What the heck is this? And why am I triggered so hard by just a few second in 80+ degree weather with such long lasting effects? 

I've otherwise been doing better, even going some places on my own. I've even gone for a few walks later in the day when it's cooler (but still in upper 70s). 

This is starting to freak me out., although I'm doing all I can to keep calm. I won't go become helpless and couch-bound again. 

[Sushi]

2 hours ago, MTRJ75 said:

What the heck is this? And why am I triggered so hard by just a few second in 80+ degree weather with such long lasting effects? 

The temperature where I live has been running in the mid to high 90s, and while I am not sweating excessively, after a very short time outside, my OI becomes extreme and I am panting for breath with the slightest exertion. Yesterday I measured my oxygen saturation as soon as I got inside--at first it did not even register and then showed 88 and slowly increased to a normal range as my breathing became more normal. 

[MTRJ75]

I didn't even think of that and breathing has not been one of my problems. Like mentioned, I did do my Kardia with the skipped beats, but it registered normal. 

I'm now onto the chills and urinating out all the electrolytes I just drank, but the muscle aching and cramping is still outrageous. 

The key in both our cases seems to be trigged by the heat though! I don't even know how to explain this to the neuro because, as I said, I was doing fine for the last week or two since the original post and even most of the year. 

What about the heat/sun is such a big trigger? 

I'm wondering if this might be Small Fiber Neuropathy? Some sort of actual damage (not just dysfunction) to the muscles or neural pathways? 

[MikeO]

Well i have been doing better this year even with the mid 80's has been less humid. Not sure if there are less allergens because but when the temps got into the 90's with humidity that sparked a flare.

Last summer did suck for me it was really hot and ended up in the ER a couple of times and had numerous orthostatic events my guess really hot weather is a vasodilator. 

@MTRJ75do the best you can to stay active it will help. I too get cramped up and the tingling pain in one arm but keeping active has helped with me.

[MTRJ75]

1 minute ago, MikeO said:

 

@MTRJ75do the best you can to stay active it will help. I too get cramped up and the tingling pain in one arm but keeping active has helped with me.

This is a big part of my problem. I'm trying to be more active, even some pushups and weight lifting. Being met with bad muscle cramps and aches afterwards that aren't just natural out of shape stuff. 

You may have a point about the vasodilation. And then perhaps the following constriction is causing all the pain/cramps/aches. 

[MTRJ75]

Also thinking, I get a lot of leg exercise by cleaning up after the dog (lot of bending). I know this because my legs shake afterwards, three times per week. 

Also, if it's vasodilation, shouldn't the worst effect be when I'm still standing and not after I sit back down? 

[Pistol]

11 minutes ago, MTRJ75 said:

 

You may have a point about the vasodilation. And then perhaps the following constriction is causing all the pain/cramps/aches. 

@MTRJ75 - this is what happens to me if I go outside into hot and humid air. It is one of my triggers - it causes all of the blood vessels to dilate and then, in an exaggerated response - the ANS dumps toms of adrenaline and the vessels constrict too much. This will result in shortness of breath, palpitations, tachycardia, fatigue, brain fog, muscle pains etc ... 

[MikeO]

15 minutes ago, MTRJ75 said:

This is a big part of my problem. I'm trying to be more active, even some pushups and weight lifting. Being met with bad muscle cramps and aches afterwards that aren't just natural out of shape stuff. 

You may have a point about the vasodilation. And then perhaps the following constriction is causing all the pain/cramps/aches. 

 

10 minutes ago, MTRJ75 said:

Also thinking, I get a lot of leg exercise by cleaning up after the dog (lot of bending). I know this because my legs shake afterwards, three times per week. 

Also, if it's vasodilation, shouldn't the worst effect be when I'm still standing and not after I sit back down? 

You do have good points here. I do also experience the blurred vision when sitting in my recliner at times i have a hard time even seeing the TV screen. As of late i have picked up on my hydration strategy and has helped (more stable bp's) and no i do not take products like Liquid IV or Vitamin water i am intolerant of the acids.

Oddly you bring up the leg shaking. I just went back in to PT for hip pain and the tech is sure it is from some type of nerve issue. We have made progress but she did provoke my right leg to shake uncontrollably. Just food for thought.   

[MTRJ75]

20 minutes ago, Pistol said:

@MTRJ75 - this is what happens to me if I go outside into hot and humid air. It is one of my triggers - it causes all of the blood vessels to dilate and then, in an exaggerated response - the ANS dumps toms of adrenaline and the vessels constrict too much. This will result in shortness of breath, palpitations, tachycardia, fatigue, brain fog, muscle pains etc ... 

I wonder if splashing cold water on my face or even going to the extreme of dumping it no my head might shock me out of something like this in the future. 

[MikeO]

26 minutes ago, MTRJ75 said:

I wonder if splashing cold water on my face or even going to the extreme of dumping it no my head might shock me out of something like this in the future. 

I can tell you almost being hit by lightning will.

[MTRJ75]

Well that's just impractical. There's no lightning around on a sunny day. 

...unless I douse myself in the ice water and find and electrical socket. At this point...

[Sushi]

4 hours ago, MTRJ75 said:

I wonder if splashing cold water on my face or even going to the extreme of dumping it no my head might shock me out of something like this in the future. 

In the Afib community sticking your face in a bowl of cold water is a strategy to bring on a parasympathetic response, so it might work. 

[MTRJ75]

Still unsteady and dealing with increased cramping/aching/twitching muscles, but I think if it happens again to this extent tomorrow I'm going to hit the shower and see what happens. Showers can generally cause symptoms for me, but they haven't been as bad lately, especially cooler ones with the warmer weather. 

[MTRJ75]

Today's been a struggle too, even without much heat exposure. Haven't been able to break out of that deep muscle ache I wake up with an I think the mast cell/allergies stuff are playing a big role. I can feel the drip in my throat before the ectopic beats even occur. I'm on three different allergy medications that aren't working. 

I don't know why I feel like I'm getting less blood to the upper parts of my body sitting down than when I'm standing though. 

[MikeO]

Please continue to avoid known triggers and continue general lifestyle measures. best i can tell you. There is no way i could ever diagnose what you are going thru. but i do suggest to keep trying.

[MTRJ75]

Honestly, I've been thinking about exposure therapy, which is the exact opposite of avoiding triggers. I have to be able to deal with warm weather eventually. 

I always fear asking doctors about exercise programs because I don't want to get into the whole deconditioning as a cause debate. 

If there were a sure fire way to train myself out of this, I'd do it. 

Heck, if they told me they'd put me in a coma for 2-3 years, but I'd be completely cured when I woke up, I'd take that at this point. 

I have so many things that needed to be done this weekend that needed to be put off again. Friendships that need to be put on hold again. 

I feel I need to figure out all over again how to move around without triggering an autonomic crash. 

PS - The cold water splash did have a short, temporary, minor positive effect yesterday, but just enough to get me back to the couch a complete meltdown. 

[Sushi]

21 hours ago, MTRJ75 said:

I always fear asking doctors about exercise programs because I don't want to get into the whole deconditioning as a cause debate. 

I watched many presentations during the Dysautonomia International conference last week and was surprised that every doctor who spoke about exercise/movement felt that it was essential and would bring benefit, but… It was almost never administered correctly for a dysautonomia patient. The program that they were suggesting was incredibly mild and gentle and something that could be done by someone who is bedbound. They also suggested a website that had good information: https://longcovid.physio/rehabilitation 

Even the very experienced doctors whose names we all know said that movement/exercise, of the right type, was vital to prevent symptoms getting worse and to bring modest improvements. This inspired me to be more disciplined on the very gentle program I have been doing. Along with @MikeO, I successfully completed a cardiac rehab program that was specially tailored for me, as a dysautonomia patient, and this gave me confidence that the right exercise program could be helpful.

[JennKay]

@MTRJ75 -- I am kind of like you with the sitting vs standing. I get light-headed and loopy after standing for a prolonged period of time. Even if I am up walking I can get light-headed. But, the worst of it, the PVCs and other palpitations, flare up when I sit down. I haven't been able to sort it out. I have no idea why it happens. I asked my EP and he has no clue. The only thought I had was that when walking around my leg muscles compensate for the poor vascular response. However, when I sit down, my leg muscles are no longer contributing and the blood pools in my pelvis. That is the best I have at this point! I did add an abdominal binder to my compression tights and I think this has helped my symptoms when sitting, but only a little bit.

[MTRJ75]

It's a shame, but understandable, that they decided to charge for the videos this year. Thanks for the link. They had a POTS-centric physical therapist on last year that mentioned that no exercise program was going to be successful if mast cell issues are still out of control. And despite all the medications I'm not, I still believe that to be the case. 

[MikeO]

Well from my own experience i am with @Sushiexercise is beneficial and i have benefited from it. One does have to invest time and energy to keeping up but it does help. @JennKayI too get symptoms like you have described (just not as many PVC's) My care team has encouraged me to frequently get up and move around and sit down this also does help (not perfect but it is the best i have for now).

I also get lightheaded when standing to long or walking at times but not alway and really don't know why. What does help is to do some physical maneuvers or move a bit rather than just standing in one place for a period of time. I tend to lean on stuff and rock my legs a bit.

@MTRJ75are your mast cells dumping histamine and causing low blood pressure or experiencing food reactions? I just don't get why exercise would be contradicted and no help.

[MTRJ75]

I don't know what my mast cells are doing, just that my nose is always running, I always feel like there's a volcano inside of me and I start sweating profusely just by leaning forward. 

My BP is weird. Runs high more often than low. 

[MTRJ75]

Yes, but for several years at the same dose at this point.