Exercise Intolerance Question

[Macho319]

Hi everyone!

I was wondering how those with exercise Intolerance describe their symptoms. I feel like I'm having a hard time getting my point across to the docs. This is what I say. 

I feel like my body can't do anymore. It's this internal sensation of like a lack of cardiac output which feels like extreme exhaustion. It feels like my body doesn't get what it needs and I become winded and struggle to get sufficient air in my lungs. My lungs feel no matter how many times I bring in air it's not enough. Then eventually it subsides with rest. 

It's so hard to describe accurately. Obviously with preload failure it means the output to your body is reduced, but I'm wondering how others describe it. Thanks in advance for sharing your descriptions. Appreciate all of you 🙂

[MikeO]

Figured out my Docs understand being short of breath and the generalized term fatigue. My endo gets the term pumping like molasses but that's because he has diabetes as well. 

we often gauge how i am feeling to how well i can go up and down the basement stairs. bad day i will be SOB quickly and very nauseous .  

[Sarah Tee]

Maybe your doctors will understand better if you compare your capacity to do things before and after.

I’m a bit different to most people in that my symptoms used to go away completely at the end of the day (and then come back in the morning).

So I might say to the doctor that when I’m asymptomatic, I can do 20 squats “to exhaustion” i.e. until my muscles get very tired and wobbly and I have to stop. When I’m symptomatic, I can barely do 5. On a bad day, I can’t even do one.

Or I might talk about a typical day or activity before and after. E.g. When I was well, I could cook dinner in an hour, including cooking time. Now I have to rest every 15 minutes, and I can’t stand at the stove for long. Meals take me up to 3 hours now because of all the resting time. Sometimes I have to prepare the ingredients one day, and cook the next, because of exhaustion. And these are simple meals, nothing fancy.

[MTRJ75]

Although my exercise issues seem different than yours (most of my problems are after any activity, not as much during), it's equally inexplainable in an understandable way with my doctors. I greatly sympathize. I did read something the other day about exercise intolerance possibly being linked to viral reactivation: 

https://www.healthrising.org/blog/2023/06/17/exercise-immune-system-letdown-chronic-fatigue-syndrome/

Quote

The authors of the present study noted that reactivated herpes viruses in ME/CFS appear to result in mitochondrial dysfunction (remodeling) that pushes cells toward a hypometabolic (Dauer) state, and suggested that exercise in ME/CFS may be resulting in herpes virus reactivation.

They may be exhausted in fibromyalgia as well. A study suggesting that NK cells are attacking nerve fibers in fibromyalgia also found that they displayed markers of exhaustion.

 

[MaineDoug]

This is a frustrating issue. Often, after describing my activity intolerance, docs will say “try pushing thru”!!!

NO, no, no! I explain that this is not an option! My “brain” will force me flat if I try to continue! Thundering heart, chest pain, effervescent hyperemia (I glow red like I’m radioactive). I find that when my BP exceeds 210/110 and HR 185 ( so about 2 minutes of standing) my body will FORCE ME DOWN at this point. My poor wife has had to watch me literally throw myself flat onto beds, couches, the floor! 
The break for me in communicating this was when I realized I can trigger the above described “attack” any time day or night, just give me two minutes and a soft spot to land😂! But still there are docs who just scratch their heads and don’t even want to observe. I’ve had enough and I now walk out on docs like that!

It’s why I drove 10 hours for an appointment tomorrow with the excellent docs at Columbia/Hospital for Special Surgery in NYC. 

[Macho319]

@MaineDoug I understand everything you say. I'm relocating to Columbus Ohio next month from LA. I plan to get evaluated by the Cleveland Clinic and Ohio State. I need a fresh set of eyes. I passed so many tests with flying colors that docs here treat me like the little boy who cried wolf. It wasn't until one YOUNG doc at UCLA that all of this changed. I still need to see if I have SFN, I need more autonomic testing, etc. This has been 4 years from h***. I'm sure everyone here can relate. 

[MikeO]

3 hours ago, Macho319 said:

This has been 4 years from h***. I'm sure everyone here can relate. 

Totally! get this. Good luck with the move!

we used to be able to get ANS testing in wisconsin but as of late has gone to the wayside. UWM won't do it even though they write useless NIH papers on it. Aurora lost their dysautonomia doc and could not find a replacement for her so they closed the clinic and froedtert in milwaukee closed their clinic as well albeit they still can test but are picky as to who they take in and tests are minimal. sure some of this is because they are losing money and if my provider does merge with them and take over, well froedtert is going to lose a whole bunch of doctors. 

[MaineDoug]

Ditto to all of the above! It’s so maddening that so many doctors ignored the clear objective signs! I would offer to stand up and let them “see and measure” what happens. Not one could be bothered!

Completely different at Columbia! Every doc listens, respects my concerns and we work together to plan the next step! What a revelation. 
 

Keep searching until you find qualified, caring professionals willing to listen and help. We all deserve this.