Exhaustion level: Feel Too Tired To Breathe

[Crazy Tired]

Anyone else get so exhausted that it feels like  theyre using all their

energy to breathe normally?

[MomtoGiuliana]

Yes I have felt this way.

Drinking more fluids and salt and ideally eating or drinking something rich in potassium helps me.

[KiminOrlando]

Yes. It turned out in addition to all this mess, I had pernicious anemia. It would take all of my energy to walk from the couch to the kitchen table (20 ft). After that I just wanted to collapse and sleep instead of eat. It was a very bad time in my life. Hopefully they do full blood counts and notice what is going on. I went for years with untreated pernicious anemia even though it was clearly in my bloodwork. 

Low blood pressure is also very exhausting as is tachycardia. When my resting HR was in the 120s, I was too tired to do anything. Keep talking to your doctors. It can get better.

[Random-Symptom Man]

When I have a day with 7+ hours of high heart rate, it is exhausting. Just opening my eyes can be a struggle. I had 14 hr high-heart-rate day last week. I took a shower in the morning, and my HR went to 163 bpm. It didn't consistently come down below 100 bpm until after midnight. For reference, my resting HR is usually 63-79 bpm. I was so tired, but I couldn't sleep because my HR was high. It took a few days for me to feel rested again.

[Pistol]

Quote

1 hour ago, Random-Symptom Man said:

When I have a day with 7+ hours of high heart rate, it is exhausting.

 

Hi there Random-Symptom Man. It sounds to me that you are not controlled with medication. Are you seeing an autonomic specialist? 

[Random-Symptom Man]

@Pistol 

Short answer: I am not yet controlled, but trying to get there.

Long answer:

I've been seeing doctors at John's Hopkins.  They got me to a diagnosis pretty quickly after others floundered, so I'm grateful for that. John's Hopkins has people that work on dysautonomia, but they aren't exactly dysautonomia specialists like at Vanderbuilt and Stanford.

I started the application process for Vanderbuilt, but that takes a while. 

I actually saw a specialist here in Colorado shortly after my symptoms forced me to quit my job. Surprisingly she didn't think I had dysautonomia and misdiagnosed me with MCAS (her other focus). She was absolutely positive I had MCAS and not dysautonomia. Yet, multiple tests came back negative for MCAS. I went elsewhere for POTS and sweatgland tests. I knew someone at John's Hopkins, so I went there.  I tested positive for POTS and sweat gland dysfunction.  Given my other random dysfunctions (ed, gastric, light sensitivity, and more) this diagnosis makes much more sense. I'm reluctant to go back to that local specialist now.

Until I get in with a better specialist, I'm going with John's Hopkins advice.

I am ramping up on Nortryptoline, which is part the problem. Every time I bump up my dosage, I get a rash of symptoms. This last week it was high HR again. Another time it was light sensitivity and bladder dysfunction (FUN!). Every time, my hands spasm and shake. I've had all sorts of symptoms spike because of it. While the symptoms often seem random, the uptick in symptoms with an increased dosage seems consistent. After I stay at a particular level for a week or two, my symptoms settle down. Next week I'll go to 50mg, and stay there for a while. On a positive note, my brain is working a bit better (when I'm not exhausted). I searched DINET for 'Nortryptoline' and only a few people here have experience with it. Everyone said it was horrible to titrate up on. Most people don't seem to stick with it.

 

[MTRJ75]

This happens to me fairly often, but not as frequent as some of my worst symptoms. Recently, I was driving (a short distance thankfully) and noticed I had trouble holding my arms up to keep them on the wheel.

It's a bit strange though because for me it can come out of nowhere and last all day or could dissipate in an hour. There's usually a deep burning ache that goes with it.

What's really strange though is when it does go disappear rather quickly, it's generally after something interesting genuinely distracts me, which makes me wonder about some of those brain rewiring theories. It has to be an organic distraction though. I can't force myself into it. Doesn't always work, it's sometimes temporary and usually doesn't work as well for other symptoms, but strange. I guess maybe one of the reasons is that as uncomfortable as it is, it generally isn't one of my scarier symptoms. 

[Amyschi]

On 10/15/2019 at 1:19 PM, Crazy Tired said:

Anyone else get so exhausted that it feels like  theyre using all their

energy to breathe normally?

Just wondering if you, or anyone, breathes through their mouth when they feel like this?  Odd question, I know.  I notice when I am more symptomatic HR wise and generally more weak, that I will be breathing with my mouth open and don't even realize it until it completely dries out, so I am doing it involuntarily.  This is only while I am sitting or laying upright though.   Maybe it has something to do with blood flow and oxygen levels?  I have tested O2 sats during this, though, out of curiosity, and not generally low.