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ME/CFS and POTS... are they one in the same?

Discussion in 'General ME/CFS Discussion' started by Legendrew, Dec 4, 2013.

  1. Legendrew

    Legendrew Content team

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    Over the last year or so following my onset of illness I've been somewhat lumped with the diagnosis of ME/CFS however it now appears that I've in fact been suffering with acute onset POTS sometimes referred to as viral onset POTS (in fact it was a vaccination which triggered mine, however this falls under the aforementioned sub-heading.) My question is whether POTS and ME are one in the same or two similar and often linked yet distinct entities. From my own personal opinion I believe them to be separate conditions however I am of the opinion that ME stems from a immune mediated dysregulation between the autonomic nervous and cardiovascular systems - if this is the case it's easy to see why POTS could 'come along for the ride' so to speak. Let me know what you think given your own experience. Do you have both ME and POTS, did one come before the other? Have you found anything that helps with your symptoms?

    Andrew
     
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  2. Esther12

    Esther12 Senior Member

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    Well, not everyone with a ME/CFS diagnosis also has POTS, so in that way they're clearly not the same.

    Reliably disentangling them will probably be really complicated so long as our understanding of ME/CFS remains so poor imo. Presumably, people with non-POTS problems currently lumped in with ME/CFS can also have POTS, and their POTS can be a result of/worsened by factors related to ME/CFS.

    My view is that there are likely to be people with so many different problems lumped in with ME/CFS, that it's likely some will have problems entirely unrelated to POTS, autonomic nervous and cardiovascular systems, and anything else that you can think of.

    Pleased to hear that you're getting more useful information about your own health problems though. Best of luck with it all.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This thread may help.

    I understand that POTS is one type of orthostatic intolerance (OI). OI is referred to quite a lot on PR.
     
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  4. rosie26

    rosie26 Senior Member

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    Hi Andrew
    I've had both, POTS riding along with my ME, (not a pleasant ride)!!!:ill:

    Even in the years leading up to my collapse I was having bouts of both in a mild form off/on.

    The POTS has eased a lot for me,(12 years in, I am at moderate levels now) but I have horrid flares of POTS still.
    PEM (physical, mental, emotional) is the trigger I think for me in inducing POTS and other symptoms of ME. Just seems that way to me. x
     
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  5. Forbin

    Forbin Forbin

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    I began wondering about this recently when I looked at the Wikipedia page about POTS. http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

    The list of symptoms is extremely close to that of ME/"CFS" and the causes of onset are also similar, including bacterial or viral infection and physical injury.

    [In fact, I began to wonder if the "aegenda" of this wikipedia page was to show that ME/"CFS" and POTS are the same thing.]

    As a teenager, a few years before becoming ill in my early 20's, I definitely had some sort of orthostatic thing going on. If I was in a deep crouch, like looking at the bottom shelf of books in a bookstore, and then stood up, my vision would dim and would look somewhat like grey television static for a few moments. In extreme cases, it would go entirely dark and then return. My doctor said I would grow out of it and he was right. It had pretty much gone away by the time I came down with a severe flu followed by the onset of ME/"CFS" symptoms.
     
  6. Legendrew

    Legendrew Content team

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    It's interesting when you get to thinking about it, i've heard similar stories numerous times. I'd be interested to hear more of your particular symptoms from ME and how inter-relatable they may or may not be to classical POTS.
     
  7. Legendrew

    Legendrew Content team

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    I agree with the disentangling metaphor - certainly it's hard to differentiate different conditions when there likely exist many different conditions under the heading of ME, many of which are likely not described in medical literature as unique diseases. The somewhat waste bin that is the ME/CFS diagnosis at the minute certainly needs refinement if research is ever going to get to the bottom of things. My post refers to what I believe ails the majority under the heading however that isn't to say that there may be numerous diseases that effect numerous body systems in varying degrees under the subheading. Thanks for the well-wishing, I'm hoping that the sudden onset and my relative young age of onset are in my favour regarding the outlook if the diagnosis is confirmed - I think everyones' aim is always to find ways to improve their symptoms as best they can.
     
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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I also had OI (not POTS) symptoms from teen years but was not "sick" till much later. I'd guess those early dysautonomia symptoms showed some sort of predisposition to ME--maybe because I was born with EDS.

    Best,
    Sushi
     
  9. SickOfSickness

    SickOfSickness Senior Member

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    Yes you got it, "CFS" as a wastebasket diagnosis will include some undiagnosed people with POTS because of symptoms in common. But real M.E. is diffferent, with 10-20% having POTS too. More if you include other OI.

    It seems to me that having one means you're more likely to get another. An M.E. expert has said 80% of sufferers he saw have low blood volume. I believe my OI symptoms are mainly from low blood volume, or began that way. After having low b.v. a while, it stands to reason that the body would have some mechanisms that are seen in POTS/OI.
     
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  10. Tristen

    Tristen Senior Member

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    You have a good understanding of both these conditions, and there's some great feedback here too. I'll just add my experience: POTS is another symptom of me/cfs for many of us. Of course a person may have POTS and not me/cfs. Only some of the symptoms are the same, but from my experience, the two are very easy to differentiate since a person with me/cfs will have way more (and more debilitating) symptoms that one would have with a primary diagnosis of POTS alone. It's very important to get this diagnosed primarily because how fortunate you would be to have only POTS, and not POTS as a symptom of me/cfs. Good grief....did all that make sense.

    When my me/cfs was severe one of my worst symptoms was OI (Orthostatic Intolerance). With the OI, I had severe POTS and NMH. After extensive antiviral Tx, I no longer have those horrible symptoms, but do have other remaining me/cfs symptoms.
     
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  11. Allyson

    Allyson *****

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    IMO not everyone with ME ahs been tested for POTS - a shame as it is cheap and easy

    Many say they do not have it but when questioned they ave not actually been properly assessed and just thein they do not have it

    Ally
     
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  12. Allyson

    Allyson *****

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    lost this post ###3TIMES WHILE trying to post so here is short version

    IMO most PWME have NOT been tested for POTS

    a shame as it is cheap ad easy to test for

    Ally
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sorry you lost your post--did you look in your drafts? Posts are saved about once per minute.

    Sushi
     
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  14. Esther12

    Esther12 Senior Member

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    Nightmare. Hate that.

    re not being tested: There have been some studies done though, and while they tend to find a significant sub-section with POTS, none seem to find over (or near) 50%, never mind 100.
     
  15. Allyson

    Allyson *****

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    lost it again - every time I post it gets lost

    according to my specialist you do not always hve measureable symptoms - some do not show a measureable drop til thy are in their 80s - years that is

    I was tested about 4 times - my specialist does tet every visit
    and my drop of 20 mHg systolic and diastolic only showed up on one of those
     
    Last edited: Dec 5, 2013
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  16. Esther12

    Esther12 Senior Member

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    I don't know about the need for re-testing.

    re your posts disappearing: seems odd to me. Never happens with my posts, and with the new software I'm often stumbling upon posts I chose not to post up, but have been saved as drafts.
     
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  17. Allyson

    Allyson *****

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    thanks - must be my set up then

    re re- testing

    if it only showed up one out of 4 times that is a good reason for the re-testing ?

    BP is so variable according to environment and the trip to the doctors could send mine soaring - plus the adrenaline boost; it has all the elements ot make ones BP go haywire

    1 get up early and get out of bed (probably skip breakfast or fluids)

    2 long drive to the doctors, often in the heat
    3 elevator trip (long stand)

    4 busy hospital environment where you get lost every time
    5 Slow walk along long corridors
    5 fleuro llghting
    6 long sit in waiting room

    sounds like a perfect recipe for Mall syndrome - a jump in BP or at least not an accurate resting pulse or BP on arrival or within quite some time of arrival -so accuracy will be compromised IMO

    Ally
     
    Last edited: Dec 5, 2013
  18. Allyson

    Allyson *****

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    some POTsies will disagree with this Tristan though - in fact the WIKI link lists fibro and or "cfs " as a symptom of POTS !

    many with POTS are severely debilitated - unable to do anything much at all

    Cheers,

    Ally
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have more or less the same experience. OI is one of my ME/CFS symptoms. When I am successfully treating viruses and infections, OI almost completely disappears.

    Someone with primary dysautonomia, whether POTS or OI or NMH, does not have the full range symptoms of ME/CFS as enumerated in the Canadian and International criteria for ME. However, I think many who are diagnosed with primary dysautonomia actually have ME/CFS, but have diagnosed by a doctor with "dysautonomia" lenses on. So it can be confusing.

    Sushi
     
  20. Legendrew

    Legendrew Content team

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    What would you define as the main differentiating symptoms? For me the primary problems I have are nausea (has calmed a lot now but still present sometimes), headaches/migraines, hypoglycemic like episodes and internal trembling; I was diagnosed with ME but looking back they all seem to be more relatable to POTS and dysautonomia, especially when combined with the pooling blood in my feet, urinary symptoms and heat intolerance i've had in the last year.
     
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