Am I PoTS or is it just ME?

Since my last post I have been responding to a number of changes in my life.

One of these is that I had a hospital appointment with a Cardiologist and he thinks I probably do have Postural Tachycardia Syndrome (see here for an explanation of PoTS and this post for how I got to this as a likely diagnosis). In the appointment my pulse was 120bpm sitting and 150bpm standing, so I think it was fairly convincing that I have some sort of heart rate issue. I have to have an echocardiogram, 24 hr ECG and Tilt Table test to confirm and rule out other possible problems though.

He started me on beta blockers and within a few hours the volume of a number of symptoms was turned down. This hasn’t been a miracle cure for everything, I do think I also have ME/this is a component of my ME (the overlap is very confusing, see below). I would say now that fatigue actually is my main symptom. Before this the CFS label was frustrating because I felt that I had such range of symptoms and fatigue wasn’t a good summary. I’m also generally confused though because people say fatigue is the main side effect of beta blockers. How would I know if its a side effect? I think it may be a sleepiness rather than exhaustion or tired-but-wired. Please could anyone else on beta blockers describe the specific nature of this side effect fatigue versus ME fatigue versus PoTS fatigue?! 

I’ve found this diagnostic process to be emotionally destabilising though, awakening some dormant issues after being ill so long, and I’ve tried to be conscious of reigning in my expectations. When I first watched this video

I was amazed at the symptoms listed and did initially think that PoTS could be a better fit than ME for the symptoms I get (ie an alternative diagnosis). I know people who just have PoTS get frustrated at the lack of a cure but if you’ve had 16 years of ME vagueness it feels reassuringly specific and any treatment is exciting.

How can I tell if I have ME, PoTS or both?

Some of you probably know that a while back I was quizzing people on Twitter about differentiating between PoTS and ME. From anecdotal reports and online reading this is what I have picked up so far (I’m still learning so feel free to clarify):

  • People with PoTS will have their heart rate increase 30bpm or more from lying to standing, and/or their pulse is 120bpm standing. This is an objective measure and confirmed by the tilt table test.

  • Both conditions get post exertional fatigue but in ME there is usually a delay eg you don’t feel it until 24-48 hours later. PoTS fatigue tends to be more immediate eg you stand up to answer the phone and feel immediately exhausted.

  • People who just have PoTS don’t tend to get the random viral symptoms which people with ME have (I get viral symptoms in a random order that come and go which I think indicates that either I have PoTS AND ME or just ME).

  • However, both conditions can be made worse by actual viruses and are often some sort of post-viral reaction initially. The doctor I saw said that for people who have both it was usually caused by the same virus (eg glandular fever).

  • Most people with ME have some problems standing but if you have PoTS this would be a main symptom and probably associated with other increased symptoms such as headaches, palpitations, dizziness.

  • PoTS can cause heavy/concrete legs which comes on suddenly. I think that people with just ME tend to have difficulty walking because they feel weak, like their legs will give way (I get both these experiences).

Or is it the same thing?!

I 4also went onto read recent research papers and found that there is a significant overlap between these conditions, with some experts thinking that there’s a PoTS-ME subgroup and other people thinking that the tilt table could form part of the diagnosis process for ME (not as an exclusion test). It struck me that which diagnosis you get may depend more on the specialism of the doctor you see (I think Julia Newton’s research indicated that 40% of people with just a PoTS diagnosis would also meet CFS criteria). It is definitely an area of interest.

Further Reading

Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome http://m.qjmed.oxfordjournals.org/content/101/12/961.long?view=long&pmid=18805903

Dr. Peter Rowe – Is The Physical Examination Normal in CFS? Part 1 | Solve ME/CFS Initiative http://solvecfs.org/guest-blog-dr-peter-rowe-is-the-physical-examination-normal-in-cfs-part-1

Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective  http://m.bmjopen.bmj.com/content/4/6/e004127.full

Sleep disturbances and autonomic dysfunction in patients with postural orthostatic tachycardia syndrome http://journal.frontiersin.org/Journal/10.3389/fneur.2014.00118/full

Implications

Another big change in my life is that we need to move cities for my partner’s work. I will probably write a separate blog about the spoonie problems associated with this, but I realised that this possible PoTS diagnosis (and more importantly treatment to ease my symptoms) completely changed my criteria for finding a house to live in. Before all I cared about was the inside of the house and preferably having no stairs to get stuck on with concrete legs. Now on the beta blockers I can imagine a near-future in which I can go out by myself. I’ve rented a mobility scooter for the week to try to figure out what I can do.

 

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16 thoughts on “Am I PoTS or is it just ME?

  1. This is so interesting. I have never read a comparison of the two before.
    I have POTS and the low BP is also a major factor and is why passing out is so frequent. But reading more about ME, I also wonder if I might have both also. They cannot figure out why I continue with on/off flu symptoms and glandular swelling. Blood tests return no answers yet I continue getting very ill, especially when I overdo myself (take a bath).
    Something else about POTS that I wonder if those with ME get is the adrenaline ups and downs from Dysautonomia. It can be like a 36 hour panic attack. However, most of the time I don’t feel depleted of energy like I assume a person with ME/CFS does (unless I sit or stand/get up).
    I started on a low dose beta blocker this year and it has been a positive without fatigue. When I tried the first time, it was too high a dose and I had a bad reaction. Low is the way to go!
    I loved reading your post. It was obviously very provocative for me!
    I hope your T.T.T. goes well along with any other fun cardiac tests they do. Whether or not you have POTS it sounds like you have something with your heart rate that hopefully can be improved somehow. Maybe us POTSies can help with some of our magic tricks! 😉
    Awesome post!
    Good luck with Verticality! 🙂

    Liked by 1 person

  2. Do you mean you get viral symptoms after a bath? I get concrete legs after a bath but I think that’s a PoTS problem because the heat interferes with vasoconstriction. Cold baths and lukewarm, sitting showers seem to avoid this. Overdoing it does provoke viral symptoms for many with ME, but I don’t know if there are other causes of this.

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  3. Interesting………I don’t think I’ve got POTS as when in good ME patch I can sit up for a couple of hours no problem. Also get up and stand / walk for a minute or so. I can ride my mobility scooter to shops and the beach and be out for two hours before needing to lie down. Not at the moment as I’m in a dip!
    So glad you can see a future of going out on your own. I LOVE the freedom of going out on my scooter! If you could get a house where it’s 10/ 15 mins scoot to a park or beach, also to shops and cafes, you’d love it! Also in a city ther should be community transport that you can book and drive your scooter onto. I have a smaller scooter that I do that with. Then I have a bigger scooter to drive on the road. Scooter heaven!! Good luck! 😄

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  9. The first link between Orthostatic Intolerance (either POTS or NMH, Neurally Mediated Hypotension) and Chronic Fatigue Syndrome (patients fulfilling the Fukuda diagnostic criteria) that I read about was back in 1995. Here’s the link:

    http://www.ncbi.nlm.nih.gov/pubmed/7674527

    It seems to me that Orthostatic Intolerance is more likely to be a subset of ME/CFS patients, or a co-morbid condition (patient has both), rather than a diagnosis of exclusion. But that’s just my two cents.

    I think one way to separate patients is that if exercise makes to better (you can slowly build up aerobic ability) then you probably don’t have ME or CFS. (or maybe you’re in remission). But if you can’t do that, if you always get some sort of PEM or PENE, then you have both (or are in a subset of ME/CFS that has autonomic dysfunction).

    Support for this view could be the 2-day CPET tests (exercise tests) showing that a large number of ME/CFS patients do worse on the second day whereas patients with many other diseases do the same on both days. In other ill patients the VO2MAX value may be very low but it’s about the same.

    Here’s a quote from one of the 2-day CPET studies:

    “ME/CFS patients currently represent a unique class of ill patients who do not reproduce maximal CPET measures, unlike individuals with cardiovascular disease, lung disease, end-stage renal disease, pulmonary arterial hypertension, and cystic fibrosis.” Dr. Keller

    (quote from this research study – http://www.ncbi.nlm.nih.gov/pubmed/24755065 )

    See article on Health Rising here – http://www.cortjohnson.org/blog/2014/05/20/declining-production-exercise-study-reveal-broad-decline-energy-output-chronic-fatigue-syndrome/

    Just some rambling thoughts – I hope it’s helpful!

    Liked by 1 person

    • Ahimsa, I think that’s a good distinction except that POTS also comes with exercise intolerance, so it’s still hard to pick apart. Is it the case that exercise just feels terrible in POTS or does it actually make people worse? I don’t know the answer. Experts say people with POTS should build up exercise but some say that with ME too!

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      • Exercise intolerance is a separate issue from VO2MAX.

        I’m probably doing a bad job of explaining. You should really read the article at Health Rising and/or some of the research on the CPET (CardioPulmonary Exercise Test) and VO2MAX in ME/CFS.

        It has not yet been testing but it’s unlikely that this issue of the 2-day CPET test would happen for patients with only POTS and not ME/CFS. For example, the 2-day CPET test did not show any decrease in patients with cardiovascular disease. They may have low VO2MAX but it is the same low level on both days.

        Anyway, I hope this helps.

        Liked by 1 person

      • In case it was not clear, the key to this relatively recent CPET testing is doing the testing 2 days in the row. Four different research studies have found some uniqute problems with ME/CFS patients and their ability to exercise on that second day (different from their ability being low to begin with on the first day).

        Here’s a youtube video that might help:

        Liked by 1 person

      • Hi. Yes delayed malaise/fatigue is definitely a problem in ME. I know about the 2 day test and it is important, although I wouldn’t like to do it! The issue is that the diagnostic overlap between POTS and ME is very confused (so perhaps people aren’t in the right category?). I’ve seen people online who just have a POTS diagnosis describe a delayed impact from doing too much the day before. I explicitly asked if they also had ME because it sounded like PEM, but they hadn’t heard of PEM and didn’t really know anything about ME. The likelihood is that people like this have undiagnosed ME (especially if you define it as PEM!) but for the time being it is the case that there are people with a different diagnosis who feel worse with exercise, even as a delayed response. What is probably needed is a 2 day CPET comparing people with just POTS or just ME or both diagnoses. I don’t think a 2 day CPET has been done on POTS but I may be wrong.

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      • Ah, I think I’m maybe being a bit unclear. What I mean is that what you are describing is right in theory. That is the difference. However, in practice it is difficult to tease apart in terms of real life experiences and the diagnoses people have been given.
        Also this post is a year old. From when I first got diagnosed with POTS. I’ve done more reading around the overlap since then and further posts on POTS eg https://tipsforme.wordpress.com/2015/10/02/shouting-about-pots/

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  10. ” … in practice it is difficult to tease apart in terms of real life experiences and the diagnoses people have been given.”

    Yes, I completely agree, difficult in practice!

    My gut feel is that patients with POTS only, not ME/CFS plus some form of co-morbid Orthostatic Intolerance (whether POTS or NMH or something else) will not have this aerobic problem. But I could be wrong. More research will help us find out.

    And of course, the idea behind the CPET research should be finding a way to tell which patients will get PEM, and what things are leading to the PEM, without having to actually make patients do an exercise test. Because you’re right, this 2-day CPET can only work on ME/CFS patients who are moderate to mild *and* who are willing to undergo a temporary crash (haven’t heard of any permanent crashes, hope there are not any) from this testing. A patient who gets ill just by sitting up obviously can’t do this test!

    “Also this post is a year old. From when I first got diagnosed with POTS.”

    I didn’t know that when I first commented. I came to this page due to a recent tweet.

    I always get confused when people tweet things that are older. I have this tendency to assume tweet links point to something recent (say within a week). I forget to check the date. Oops! I will try to remember to look at the date when someone tweets an article and not assume that it is a recent one. 🙂

    And sorry to hear that you might have had undiagnosed POTS for so long. I don’t understand who so many doctors are unaware of the Johns Hopkins research from 1995, and all the follow-on studies, that link Orthostatic Intolerance to both ME/CFS and Fibromyalgia. Maybe not all patients but at least a subset.

    Okay, gotta go now, have been interrupted so I can’t review/edit this. 🙂 Hope there are not too many typos or other errors!

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