mild symptoms

[.jm.]

I have heart rate monitors and stuff. Do we have an article on how to do a POTS test at home?

Interestingly, I have noted long before the symptoms here started that my heart rate jumps up when I stand. and when I start to move around it goes way up. It would not be unusual for me to have a heart rate just over 100 walking around whereas my resting heart rate is below 60.

 

[.jm.]

Oh, and I keep on forgetting that there is one other symptom that preceded the onset of CFS (and then went away months later): Osteitis Pubis (groin pain where you two hip bones meet in front righth above your crotch.) It was so bad at one point that I asked my doctor to order an x-ray to make sure something wasn't fractured.

 

[kelly8]

Hi @.jm. i also was a high performing athlete before this all began. After competing myself i started coaching and would ride my bike 7 miles a day from home to work and back. I got sick in 2007-2008. I never fully recovered my energy from that. I had to stop coaching because i couldn't keep my energy up enough to do it. I'm not sure what i got but i was coughing so bad that eventually i needed hernia surgery. And i would literally fall asleep after teaching my classes. I have since improved slightly from the fatigue but certainly not enough to ever do that kind of activity again. (Which is heartbreaking because i miss it).

Right now I'm caught in a work/ recover cycle. I have enough energy to work and then i crash the next day and force myself to rest so i can work again. This sucks. But you are not alone. Sometimes i wonder if my athletic training prior helped at all in my level of fatigue now. Who knows? Now i just need a Dr to believe me and help. But we all know how that goes...

 

[.jm.]

Thanks @kelly8. I do wonder if being in (or at least having been in) excellent athletic shape either masks symptoms or makes us less believable when we describe our symptoms. I had grand plans of going after Olympic trial qualifying times last year. I had races scheduled and travel reserved.

You know that if POTS is the major player in fatigue, they treat it, in part, by making people exercise lower body to build lower body muscle mass. If we already have strong lower body, then the POTS onsets, and we start to loose our strength, It wold possibly initially mask the symptoms and then symptoms would get worse as it wore off.

Just paying attention last night, standing in the shower (where I was not standing complete still, but contained in a 2x2 foot area and not running around) my heart rate fluctuates between 90 and 130-ish. And peaked at 165 without aerobic stimulus. Just hot water and standing and a bit of arm waving. I assume that something here is relevant, though not necessarily the smoking gun.

Also, I can touch my thumb to my wrist. It Isn't easy, but I can do it without too much force.

 

[Dechi]

I have heart rate monitors and stuff. Do we have an article on how to do a POTS test at home?

Interestingly, I have noted long before the symptoms here started that my heart rate jumps up when I stand. and when I start to move around it goes way up. It would not be unusual for me to have a heart rate just over 100 walking around whereas my resting heart rate is below 60.

There is the NASA lean test you can do at home until you get a real one and you can bring the results to your doctor.

Here tou can learn all about OI and the test. Skip to 36:00 if you want to learn about the test itself and how to interpret it.

Here is a form to fill out if you want.

https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

 

[.jm.]

Simple enough. I need someone to take my blood pressure manually. I know enough nurses. that should be possible.

 

[Dechi]

Simple enough. I need someone to take my blood pressure manually. I know enough nurses. that should be possible.

You can buy an automatic blood pressure cuff for under 30$. The hardest part is to take the heart rate. I wore my polar h7 belt and just looked at my tablet every set time to get my hr. You just leave the cuff on your arm and have someone take your bp when needed, set the timer and watch it. This person will also write down your results, while you just lean on the wall.

Anyone can take your bp, you can’t make a mistake with the automatic ones. My daughter did it for me.

 

[.jm.]

In a surprise, I called Ohio State to schedule and they had an opening on monday from a cancellation.... so I took it.
Neurology sees fatigue patients there.

 

[Diwi9]

@.jm. - You can do a basic at home test using a pulse oximeter. Lay supine and check your at rest heart rate, then just stand without purposefully engaging your glutes and quads (compensatory for OI), and watch your heart rate. I can go from 60/70's to 130/140's in under one minute. Something is not right...my mother who is in her 70's has a bpm in the 70's sitting and will stand and it does not fluctuate.

 

[JeanneD]

I have talked to quite a few other athletes that went relativity suddenly from peak athletic shape to some sort of set of mild problems like mine. We all generally describe it as feeling like hitting lactic threshold after a few minutes and needing to stop.

Classic for ME/CFS, almost a defining characteristic. We hit our lactic acid threshold very quickly. If we stay at or near our lactic acid threshold very long we "crash". Look up the work by the Workwell Institute. Maybe somebody can come up with the names of some of researchers there for you. I can't pull them out of my memory atm...... Snell! That's one of them.

People who were very athletic are often milder (for a time anyway) because even though their lactic acid threshold has dropped significantly, it's not so low that they reach it doing normal activities as most of us do.

I agree with others that you should check out various forms of dysautonomia, of which POTS is one before you get too far along thinking about ME/CFS.

It's good you're seeing Dr Chia. I don't know as much about his treatment as I do that of other specialists, but he's a good one, so he'll probably do the necessary tests and be able to tell you whether you have ME/CFS or not. If you do, he can guide you on your path through this damned disease.

 

[JeanneD]

One more interesting symptom I should mention. For the last year or two, I've had a really difficult time managing hydration in sports.

This is also very common in ME/CFS. It's often due to a hormone deficiency that results in your kidneys taking too much water out of your blood. Drinking more doesn't help much because your kidneys just take it all out again. Milder cases can be treated with significant, but not difficult, lifestyle changes. Moderate and severe cases usually need meds.

Low blood volume might explain some of your symptoms. Rapid heart rate increase moving from sitting to standing, for example, can happen because your body wants to pump more blood higher, but if your blood volume is low, it can't quite achieve it, so your heart beats faster to try to compensate. There are other reasons for that symptom, I'm just pointing out one of them.

Cort has a good article about the Poor Man's Tilt Table Test somewhere here. When I find it, I'll come back and put a link here.

Here ya go. It tells you about different types of orthostatic intolerance (OI). POTS is not the only one, although the most common.