Differentiating POTS from ME - Harder than it sounds.

[AdamS]

http://www.meresearch.org.uk/wp-content/uploads/2014/06/Prof.-Newton-QA-session-July-3rd-2014.pdf

@AdamS

A Q and A session with Julia Newton. One question deals with your issue briefly.

Interesting. Newton on CFS/POTS 'I generally think about it as CFS with a POTS phenotype.'

 

[ukxmrv]

Adam, what happens to you seasonally or is it too soon to get a clear picture?

I have ME after a sudden onset viral illness, POTS however is something I think I have had since a teenager. Back then of course I didn't know what it was called. All the POTs episodes I remember from my teen years were in hot summer weather or when playing sports.

There are some years I feel that ME dominated the Winter and POTS the Summer.

As an example in the Winter I can do activities that involve my arms being raised, standing and walking better. At times I don't feel the terrible weakness on standing. In the Winter however, I can go from one flu to a cold to the vomiting bug and so on for months.

In the summer as the temp raises the POTS kicks in. Hayfever as well. The viruses/ colds etc clear up though. There are exceptions to this like the weird summer flu I get which feels a little like the acute onset attack (which was severe with tonsillitis and I was unconscious with a high fever).

In the Summer regardless of my viral / infection state I can barely stand in the hot weather or raise my hands up or walk very far.

 

[Dechi]

Thanks a lot.

Background/Context
Okay, to give you a bit of context, prior to falling ill I was in the best shape of my life, I was a former County level athlete, could perform 15-20 wide grip pull ups consecutively and was at about 7% bodyfat. I'd been training quite excessively for months doing bodybuilder splits about 4-5 times per week before I finally crashed at the gym. Sometimes I feel that i'm not as bad as some people but in relative terms you could say that my functional decline has been pretty extreme.

Relapses/PEM
I have experienced 3-4 major relapses in the past 6 months, all of which have occurred after over exerting/going to the gym, each relapse happened after less exertion than the last. These relapses generally last for 2-3 weeks until I recover back to baseline and leave me pretty much sofa bound, hardly able to walk because of weakness/lactic acid in my legs, general malaise, mild sore throat, headache etc. If I was to describe how I feel when I wake up, it would be that i've just run a Marathon and been beaten up by Mike Tyson in my sleep. This is what I would call PEM for me. My last relapse was triggered by doing light cardio for 20 mins at the gym 5-6 days in a row, I started feeling very fatigued, then woke up feeling really groggy with a sore throat, weakness, severe fatigue and malaise which took about 2 weeks to recover from.

Baseline
Now i'm back at baseline, I am able to do some things like drive for 30 mins, socialise a bit, drink small amounts of alcohol, go to bars if I feel well enough. I can't walk much further than 2 miles because of severe migraines/orthostatic headaches and can't watch TV programmes for long. I can't lift my arms above my head for long without triggering a huge POTS flare. I can't lift weights or squat because it makes me super light headed, if I walk up hills I get out of breath within minutes and have to sit down. As long as I don't do something stupid like 30 minutes cardio or weights 2-3 days in a row, I don't really get PEM, in fact i've stopped exercising completely to avoid it. In terms of immediate symptoms, if I was to do say 2000m on a rowing machine and then stand up after, I would quickly get very dizzy and lightheaded (sort of pre-syncope level), unable to follow conversations etc and i'd have to sit/lay down to recover which would take about 30-40 mins, I guess this is the POTS.

Things that make me question whether I have ME
- I've never had swollen lymph nodes in the past 6 months.
- I wouldn't say i've had outright 'muscle pain' - More just lactic acid type muscle fatigue.
- I don't really have too bad light/noise sensitivity even after a really bad relapse.

I have ME but no POTS. I could take your story and make it mine by changing only a few words. Everything you are describing here is pure ME. Only thing is I would be bedbound if I were to even try to do 10 % as much as you do.

Why do you think you have POTs, were you tested ?

 

[AdamS]

@ukxmrv

Probably too soon to get a clear picture. Strangely though despite having POTS, I can tolerate being out in the hot weather quite well, I do get a bit dizzy after sitting in the sun for a while but nothing major. If I have a hot bath I nearly pass out after though when I stand up haha. Hayfever is a killer, not looking forward to that this year

It's cool to hear about the way the different seasons affect your symptoms, I guess i'll find out more about the way my body reacts in time!

 

[AdamS]

I have ME but no POTS. I could take your story and make it mine by changing only a few words. Everything you are describing here is pure ME. Only thing is I would be bedbound if I were to even try to do 10 % as much as you do.

Why do you think you have POTs, were you tested ?

Haha, it's good that you can relate to my story! Sorry to hear that you would be bedbound if you did 10% as much as I do though. That's kind of why I wasn't sure if I truly had ME, because I seem to be able to do slightly more than others i've heard about. To be honest, none of what I am able to do is really that enjoyable though.

Yeah i've been tested for POTS twice by a specialist in the UK, I failed 2 tilt table tests.

 

[Dechi]

@AdamS If you're still in the early stages, you might be able to cope more. I continued training for a whole year before I had to stop. Went from 7-10 hours of training per week to 8 minutes on good weeks...

 

[AdamS]

@Dechi

Wow, that's a pretty extreme decrease in activity. What sort of training were you doing in that year? Do you think continuing to train made the illness worse for you?

 

[Dechi]

@Dechi

Wow, that's a pretty extreme decrease in activity. What sort of training were you doing in that year? Do you think continuing to train made the illness worse for you?

I was doing weight lifting at the gym, 4-5 times a week and bike riding in the summer for 2-3 hours more. I was also working 50+ hours a week. And I had a very stressful job.

Yes, I think that my continued training probably made me worse. Sometimes I would almost faint after training, or during. But I didn't know I was sick at the time. I finally started to understand there was something wrong when I came back from my leg routine and just collapsed when I entered my house. I couldn't walk anymore...

 

[Hip]

I myself can usually easily distinguish between my POTS flares and my ME/CFS flares. not just through symptoms which though the same symptom may be slightly different but also by how the flare comes on. eg a POTS flare to something doesnt have the delay thing ME/CFS flares can do.

Noticing these POTS flares seems like a useful way to distinguish POTS symptoms from ME/CFS symptoms. However, I think this applies more to people who (perhaps because of their particular POTS subtype) have exacerbations of symptoms on standing, or on raising their arms above their head, etc.

In my case, although I am self diagnosed with POTS (my heart rate increases by around 25 to 40 points on standing from a relaxed lying down position), I don't get any noticeable symptoms on standing, and I don't get any noticeable POTS flairs.

So for me that makes it hard to know what symptoms are due to POTS, and what are due to ME/CFS. There are no transient flairs that allow me to identify and differentiate my POTS symptoms.



Are there any other people here who have POTS, but don't get any flairs or increased symptoms on standing?

Note that in the home test for POTS, an increase in heart rate by 27 points or higher on standing is diagnostic for POTS. In the tilt table test performed in a doctor's office, you need a 30 point or high increase for a POTS diagnosis.

 

[AdamS]

@Dechi Wow, our stories really do sound very similar. I've heard about quite a few people who had onsets of ME after weight training/bodybuilding actually, I wonder if it is this constant stress on the muscles which eventually triggers some sort of immune storm/response. I'd never had any problems weight lifting until I got a stomach virus and staph infection with reactive cellulitis...that's when my health started to go downhill.

 

[Dechi]

@Hip According to the NASA home test, I had POTS. But thorough testing showed I didn't. I don't think hometests are 100% accurate.

 

[Dechi]

@Dechi Wow, our stories really do sound very similar. I've heard about quite a few people who had onsets of ME after weight training/bodybuilding actually, I wonder if it is this constant stress on the muscles which eventually triggers some sort of immune storm/response. I'd never had any problems weight lifting until I got a stomach virus and staph infection with reactive cellulitis...that's when my health started to go downhill.

It's not the weight lfting that caused ME, but 2 viral infections. The last one got me really sick. If you had a stomach infection, that's probably your trigger as well. In pure ME tradition, 70% of the time the illness starts after a viral infection from which you never recover. You should get a gastric biopsy to determine what you were infected with. In my case, an enterovirus is suspected, and I should have a gastric biopsy soon. Once you know what you're infected with, there is still nomcure but you can try different treatments to help.

 

[Hip]

@Hip According to the NASA home test, I had POTS.

What is the "NASA home test" for POTS, can I ask?

The home test I have in mind is the "poor man's tilt table test", aka the active standing test, which is the same as the head-up tilt table test, except that there is no tilt table, and you have to stand up from lying with the power of your own muscles.

This study found that the head-up tilt table test and the active standing test ("poor man's tilt table test") are equally good in diagnosing POTS.

 

[Dechi]

@Hip Here it is. Dr Bateman has a video about it on youtube also, where she explains how to interpret it. I'll try to find it.

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

Here is the video, go to 35:20

 

[Hip]

Thanks @Dechi.

This NASA 10 minute lean test looks very similar to the active standing test ("poor man's tilt table test"), except that in the NASA test you lean against the wall for some support, whereas in the active standing test, I believe you stand up straight without any support.

The NASA 10 Minute Lean Test

Source: here​

 

[Diwi9]

@Dechi Wow, our stories really do sound very similar. I've heard about quite a few people who had onsets of ME after weight training/bodybuilding actually, I wonder if it is this constant stress on the muscles which eventually triggers some sort of immune storm/response. I'd never had any problems weight lifting until I got a stomach virus and staph infection with reactive cellulitis...that's when my health started to go downhill.

This was my story too. I was training for a fitness competition, best shape of my life and loved weight lifting. I would do 10 minute cardio warm-ups before my workout, that is when I first noticed a serious energy decline...I couldn't jog for 10 minutes.

 

[BurnA]

I was doing weight lifting at the gym, 4-5 times a week and bike riding in the summer for 2-3 hours more. I was also working 50+ hours a week. And I had a very stressful job.

@Dechi Wow, our stories really do sound very similar.

This was my story too. I was training for a fitness competition, best shape of my life and loved weight

You might be interested in this thread if you haven't seen it.

http://forums.phoenixrising.me/index.php?threads/onset-associated-with-exercise.39910/

There were similar threads too on same topic if I remember correctly.

 

[AdamS]

You might be interested in this thread if you haven't seen it.

http://forums.phoenixrising.me/index.php?threads/onset-associated-with-exercise.39910/

There were similar threads too on same topic if I remember correctly.

Thanks mate, great thread!

 

[Murph]

@AdamS you said you've stopped exercising completely to avoid PEM.

It makes sense. You have to listen to your body. But I've had periods where I've reaped the reward of resting completely, and over time, the deconditioning has contributed to my problems.

I'm in a mild state and I can do *some* activity. The problem is not moving my body per se, but the point at which that movement becomes "exertion." Deconditioning reduces the exertion threshold for me and so the trigger for PEM becomes easier and easier to pull.

I believe some people who are mild may have a window in which they can do a small, consistent amount of exercise on good days and keep their health up. More moderate/severe people don't have that window.

It's a paradox, but it sounds like you may be in a mild state like me, and it is possible that regularly doing the amount of activity/exercise you can do without triggering PEM may be important for putting off a decline.

 

[AdamS]

@Murph

Very good point, in fact you're right, I could probably do some really light exercise and not experience PEM as long as I have rest days in between. I'm just a bit scared to start proper exercise again after my last few failed attempts, I do try to go on regular walks of about 1-2 miles per day and don't get PEM from that.

What sort of exercise do you find useful? My last relapse was triggered by doing cardio for about 20 mins 6 days in a row, where my heart rate was around 160-170bpm. I wonder if low rep weight lifting or even isometric training would prevent deconditioning/PEM? It's tricky to know what the best/safest training program would be.