I am POTS but what’s ME?

This CFS/ME blogger and advocate at TipsforME.wordpress.com is writing about 2 colliding conditions which are rarely explored: the intersection between ME and POTS. Her questions and discoveries are so engaging and intelligent. I am excited that someone is finally writing about this, and I hope more awareness will come to light on 2 very similar conditions which need attention!

I am POTS but what’s ME?

I’m sitting at the computer typing this wearing sports compression leggings and a sports’ heart rate monitor, when the most strenuous activity of my day is likely to be a sitting shower (at which point the sports equipment will come off!).

Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition.

Background: I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which in terms of symptoms and management.

This is a post which is more about asking for tips from you than offering tips (although you may be able to infer some tips from what I’m already doing). Please comment on the end of this post, rather than Twitter or Facebook, and then other readers can see your tips too.

I’m feeling a little stuck and confused. My confusion stems partly from the blurred boundaries between POTS and ME/SEID (see Am I PoTS or is it Just MEfor background on this). Since writing that post I have had a formal Tilt Table Test diagnosis of POTS, but confusingly the SEID renaming process now includes a Tilt Table Test as part of the diagnosis (not as part of a diagnosis of exclusion, so notsaying that you have POTS instead of SEID/ME because your heart rate increased when tilted). This leaves me a little confused both in terms of illness identity and practical advice. Is PoTS just part of ME for a subgroup and therefore ME strategies apply?

Symptoms

Currently my symptoms are more obviously POTS than ME (if it is possible to separate out the two). My most stressful symptom is concrete legs which I seem to be getting more frequently again, despite being on beta blockers. This means that I can’t leave the house by myself and sometimes I get stuck within the house (halfway up the stairs is the worst). I even get this from sitting upright. My understanding is that this is caused byblood pooling in my lower legs meaning there isn’t enough blood flow to my thighs, I can still move my calves and can sometimes do a little shuffle. It definitely helps to know what causes this. Previously I was told it was ME fatigue related which didn’t really fit and led to unnecessary extra bed rest (more on that in a future post on symptom based pacing).

Standing up I’m getting the belt-tightening-around-my-chest sensation, which might be more worrying if I hadn’t recently had lots of cardio tests. I’m also getting more dizziness standing again, although strictly speaking this is maybe low blood pressure rather than tachycardia related. By the way, when is low blood pressure dangerous? The other day my home monitor gave readings around 84 over 49, with related symptoms. I spent the day in bed, drank loads and ate salty things.What would you do in this scenario?

I had stopped wearing my heart rate monitor because my readings had become boringly low with the beta blockers, and it is a little uncomfortable to wear, but I wore it again yesterday to check. Although I’m not getting the previous bizarrely high readings I do frequently go over 100bpm standing while on Bisoprolol to slow my heart rate(technically still POTS because resting is more than 30bpm lower).

The two conditions have such similar symptoms that if it wasn’t for my sometimes odd viral symptoms I would think that CFS/ME was a misdiagnosis (afterall I was diagnosed with a diagnosis of exclusion method and they didn’t test for POTS at the time).  I don’t really think it’s a misdiagnosis but part of me suspects that my non-POTS-ME may be relatively mild underneath all this POTS stuff and therefore I’m wondering if I should concentrate on POTS based advice.

Exercise and Heart Rate

Exercise is the main point of confusion. Although POTS is another condition where exercise makes you feel pants, it does seem to also be an important way to get better if done right. The crucial factors seems to be to start off lying down and strengthen calf muscles. I have got to the point that I can do this recumbent ME-specific yoga most days if I don’t have a shower:

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