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Comorbidity of POTS & CFS in Australian Cohort (2013)

Discussion in 'Latest ME/CFS Research' started by Simon, Nov 12, 2013.

  1. bertiedog

    bertiedog Senior Member

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    One of the main treatments offered is a combination of low dose betablocker like Propananol plus Fludrocortisone to increase blood volume (it helps to retain sodium). If these don't work then drugs like Midodrin are used.

    The combo of 20 mg Propananol and a tiny dose of Fludrocortisone a couple of times a week have virtually stopped the POTS symptoms I used to suffer very badly. I can see though that in the likely scenario of a person with ME/CFS having weak adrenals and therefore low bp then the betablocker could be a problem. It isn't for me because my adrenals are treated with a daily dose of steroid, hence the treatment for POTS works pretty well, certainly not 100% but hugely better than I was.

    I haven't needed to try any other regime because the betablocker and steroid have worked so well. I still experience a feeling of my heart beating faster if I have been shopping in a warm environment for say 25 minutes and I will start to sweat and feel uncomfortable so it hasn't gone completely and goes to prove I am still not normal. But I am able to go out everyday and have some gentle exercise for which I am very grateful. I notice my leg muscles will go quite stiff and a feeling of exhaustion will set in after I experience this but I then use my oxygen concentrator for at least 30 minutes and will fee much better. Without it I would go on feeling crap till the next day.

    Pam
    ahimsa, Allyson and Firestormm like this.
  2. Firestormm

    Firestormm Guest

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    @bertiedog

    Pam, the more I read about this POTS the more I think I may have had it, have it, or that it describes something else that remains with me as part of the ME.

    Your description struck some chords with me especially. I recall specific instances - at University and elsewhere - when I would be in very warm environments perhaps in a room with others eating dinner, and would be sweating like I was in a downpour. We used to laugh it off and generally my friends/family came to accept it. But similar experiences occurred when on my own and in less warm environments.

    The heart beating fast, the stiffness in leg muscles, the dizziness as feelings of heat rose, and the sudden onset of extreme exhaustion once this has passed - is most familiar. To be honest I put it down in large part to the ME I must admit and as it has now passed - indeed I seem to recall significant periods when this was a problem so I think it is fluctuating - without specific treatment: I am still left wondering.

    Once you have ruled out anxiety - and these symptoms when experienced especially if among others can of course bring on feelings of extreme anxiety and self-consciousness: then I do believe they are at least in part representative of something - more. Anyway, thanks for the reply :)
    aimossy and Legendrew like this.
  3. Legendrew

    Legendrew Content team

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    Interesting to read the trouble we have differentiating different forms of dysautonomia and ME. I myself am in the process of testing for POTS as it seems I have acute onset, viral POTS - technically I got it after a vaccination but it's classified the same. For a while I was lumped with the diagnosis of ME/CFS without the appropriate testing to rule out other things such as dysautonomia, I assume i'm not the only person who this has happened to which doesn't help when trying to differentiate what ME is characterised by. It's a little frustrating looking back as i've never suffered the extreme fatigue of ME, my main complaints from the outset have been headaches, nausea and inner trembling which isn't a typical presentation of ME however is much more common in POTS. I think many doctors are guilty of resorting to a CFS diagnosis if all obvious things are ruled out without appropriate referrals to investigate further.
    Nielk, aimossy, Valentijn and 3 others like this.
  4. rosie26

    rosie26 Senior Member

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    It is very frustrating. POTS and OI were some of my most severest of symptoms in the severe years. Wasn't treated for any of them. Wasn't told I had them, Wasn't tested for them.

    It is only since coming to PR and reading about them that I have realized that those were the names of the symptoms I experienced for many years
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm not sure that dysautonomia could be considered an exclusionary diagnosis. From a quick search it appears to have a range of definitions and some include secondary dysautonomia with a primary diagnosis of, for example, POTS - e.g. see this paper.

    I wonder whether some disease names are actually helpful, as there seems to be significant disagreement over their definitions as well as significant levels of misdiagnosis - and when is 'misdiagnosis' just a matter of ascribing a different name to what could just be a variation on a spectrum of related disorders?

    As I've mentioned before, this plethora of names for ill-defined and often-related conditions is very much a modern, Western model, and maybe some more traditional systems of classification have something to teach us?
  6. bertiedog

    bertiedog Senior Member

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    I think it is very confusing. Undoubtedly not everyone with ME/CFS has POTS but for me it developed after about 5 years of having ME/CFS though I think I might have had a slightly milder version of it from the start because the heart racing/dizziness, coming out of nowhere goes back a long time but I think it has changed as time has gone by and now definitely there is the uncontrolled sweating, dizziness, feelings of anxiety and wanting to sit down or preferably lie down and rest. Then I am aware that my legs have gone very stiff and could do with a massage but I wouldn't have the energy to do that, at least not until I have breathed my oxygen concentrator for at least 30 minutes plus I feel exhaustion.

    BTW I was tested at the Breakspear private hospital here in the UK for Autonomic Function and this is where they found I had less than 50% of normal values of oxygen in my cells hence their recommendation that I needed to breathe oxygen at least 3 times daily. It has made a massive difference to what I can achieve each day. I think this develops over time because I definitely didn't need it 10 years ago. During the test on that day I had above normal levels of Carbon Dioxide.

    I also have problems with very frequent sore throats, in fact it never looks normal. Also I have 5 or 6 raised antibodies to different Herpes type viruses so again this is typical of ME/CFS.

    But one very important difference with me to most sufferers is that I feel better for exercise every day unless I have an infection. I can only manage around 20 - 30 minutes maximum of walking at a good pace but if I don't do this my whole body feels worse, very achy and sore plus my brain feels sluggish and not happy. It was like this today when I did work on my laptop for a good part of the morning and then took some friends out at dinnertime which lasted 2 1/2 hours. Then I went back for a cup of tea to one of the friend's flats so was sitting around yet again. I got home after 4 hours feeling drained and tired. I used my concentrator and soon fell asleep for 25 minutes and felt much better after.

    However my legs felt horrible, achy and not right so I went for a good 20 minutes walk around the block in the dark despite it being cold and windy. Once back I felt so much better, mood improved and somehow my body just feels happier. Now I know that is not typical of ME/CFS. If I was to overdo the walking then I would definitely feel very bad but the POTS would have kicked in big time so is that the reason I would feel so bad?

    I have to take a daily, replacement dose of steroid, ie 6mg Prednisolone which enables me to take thyroid medication because I have Hashimotos. Both of these would support my body, certainly not curing me but I wonder if this is the reason why I am able and want to exercise daily? Its all so complicated and way beyond my GP!

    Pam
  7. alex3619

    alex3619 Senior Member

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    Especially in the UK or anywhere that discourages testing due to cost.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder whether or not this is atypical? Apart from those for whom it is not an option as they are too disabled, do many other ME sufferers find that they feel better after a walk that is enough to get the circulation going but not enough to cause exhaustion? I try to get a reasonable, but not excessive, amount of physical activity each day. In fact, everyday tasks usually provide more than enough!

    But if we over-exert, we may not realise it until 1-3 days later when the PEM kicks in, although personally I usually find that my legs become weak and achy soon after over-exertion.
  9. Valentijn

    Valentijn Activity Level: 3

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    I feel much worse during and immediately after walking around. I also then get the PEM a day or so later if I've done too much. The less I do, the better I do :p
    aimossy likes this.
  10. bertiedog

    bertiedog Senior Member

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    This is definitely the opposite of how I am. Everything except my leg muscles feels better after exercise, even if it pushes me a bit at the time. The leg muscles take a while to feel strong again but I think this where the oxygen concentrator helps me to recover.

    I feel very fortunate that I have this back up.

    Pam
  11. Dolphin

    Dolphin Senior Member

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    Study uses data from 2009 on. Perhaps if Don Lewis did a study after the ICC for ME came out, he might use the ICC.
  12. Dolphin

    Dolphin Senior Member

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    This is the definition of POTS they used.

    I don't recall most other studies using part (ii) or (iii)
  13. Dolphin

    Dolphin Senior Member

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    The authors recommend that orthostatic testing become part of CFS diagnostic investigations.

    However, treatment for POTS in ME/CFS may not be as effective as POTS that is not part of ME/CFS.
    Valentijn likes this.
  14. Dolphin

    Dolphin Senior Member

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    I think I read before that the non-tilt-table standing test (such as used in this study) is not as sensitive to orthostatic intolerance problems as people may move little bits (which stops the blood pooling as much in the legs, I think). Not sure whether that is just an issue with NMH or not.
  15. GcMAF Australia

    GcMAF Australia Senior Member

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    I see one of the authors is Don Lewis who is treating Lyme Disease

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