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Differentiating POTS from ME - Harder than it sounds.

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by AdamS, Apr 18, 2017.

  1. AdamS

    AdamS Senior Member

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    Despite clearly meeting the International Consensus Criteria for ME and being unable to work or exercise anymore, I still question whether I truly have ME or whether POTS alone is the real culprit.

    I thought the graph below would help me, but it actually made me more confused. There's so much overlap that they almost seem like the same disease, 'CFS-POTS' (as they call it on the graph) looks to have a slightly higher prevalence for most symptoms but Non-CFS-POTS could easily qualify for ME criteria too surely.

    What do you think?

    [​IMG]

    A few thoughts/questions of my own for anyone interested:
    • Does POTS without ME actually exist?
    • Is ME PEM and POTS PEM the same thing?
    • How does does POTS fit in with the PDH dysregulation findings by Fluge & Mella?
    Source:
    https://www.ncbi.nlm.nih.gov/pubmed/21906029
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    CellTrend differentiates POTS and ME antibodies though their test is considered experiment and needs to be verified by additional studies
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    Also I've talked to people with pure POTS (no PEM) who just report the orthostatic symptoms and are asymptomatic with medication

    And there are people with pure ME who walk around just fine but still have the neuro/immune/PEM issues

    Truth be told for most there's likely a lot of overlap
     
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  4. AdamS

    AdamS Senior Member

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    Cool, i'll have a look into this, sounds interesting. I remember seeing an awesome table by @Hip on another thread I think which showed the different autoantibodies associated with POTS, ME and Orthostatic Hypotension, I think the Adrenergic Alpha 1, Beta 1 & 2 and Muscarinic M1 & M2 receptors had autoantibodies in POTS but ME seemed to have even more.
     
  5. AdamS

    AdamS Senior Member

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    That's quite promising to hear. From my experience POTS/dysautonomia is definitely not easy to treat, even under the care of a specialist, so i'd love to know what meds they've tried. I've personally tried Midodrine and Ivabradine so far, (along with increased salt, fluids etc) but have had little luck, i'm hoping that low dose Propranolol will work better for me.
     
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  6. Murph

    Murph :)

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    I think this is an excellent research question.

    The overlap certainly lends credence to a model of ME/CFS involving misfiring endothelial cells which fail to adequately control vasodilation and vasocconstriciton. (explaining our problems with warmth, exercise, alcohol, standing.)

    It might be linked to immune activity because endothelial cells are key immune monitoring and signalling cells that could "call in" an immune response when they observe problems, such as a persistent failure to manage homeostasis with respect to shear stress inside blood vessels. PEM would simply be acute immune system activation in response to a failure of circulatory system homeostasis, and everything else could be related to chronic immune activaton.

    This theory seems potentially powerful to me in explaining much of the etiology simply, except, perhaps, the role of the gut.
     
  7. Hip

    Hip Senior Member

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    That is a very good question, and something I have pondered on as well. Dr Julia Newton had the idea that a lot of patients diagnosed with ME/CFS may just have POTS:

    ME: one third of patients 'wrongly diagnosed' - Telegraph

    But I have not seen any follow up to her speculation.

    Another related question is that for someone who has both ME/CFS and POTS, since they both create similar symptoms, how do you know what percentage of a given symptom comes from ME/CFS, and what percentage comes from POTS?

    I guess the only way to work that out is to try some POTS treatments, and see if some of your symptoms improve. I have tried some treatments for my own POTS, such as increased salt intake and Florinef, but this did not improve any symptoms. I tried beta blockers briefly, but they cause side effects.

    Treatments for POTS given here: POTS What Helps? - POTS - Dysautonomia Information Network



    That post is here in case you want to refer to it. But note that the autoantibodies listed in that table are not found in every ME/CFS or POTS patient.
     
    Last edited: Apr 18, 2017
  8. halcyon

    halcyon Senior Member

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    Yes.

    No. PEM doesn't occur in POTS as far as we know, just post exertional fatigue, which is not PEM as in ME.

    I don't think it does. My guess is that POTS in ME is caused by immune mediated neuropathy of sympathetic nerve fibers, and/or damage/dysfunction in the brain (related to Dr. Hyde's recently reported findings of blood flow issues to the insular cortex in ME patients with POTS, or potentially an issue in the brainstem).
     
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  9. TrixieStix

    TrixieStix Senior Member

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    The more I learn about POTS the more I also question how many of my symptoms are being caused by dysautonomia. I'm also questioning if my dysautonomia could have been caused by small fiber neuropathy which I suspect I likely have.

    However I had my Natural Killer Cell Function tested recently and it was found to be way below normal range which fits with ME/CFS although it is not specific for ME/CFS as other conditons can cause low NK cell function.

    Is it possible for you to get your NK Cell function tested? It's not low in everyone with ME/CFS, but it seems to be the case for a lot of ppl.
     
    Last edited: Apr 19, 2017
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  10. taniaaust1

    taniaaust1

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    Sth Australia
    Unless when then they ruled out the ones with the POTS diagnoses in possibly having coexisting ME/CFS with it, it would mean that there would be many ME/CFS patients in their so called POTS group which of cause would completely ruin an accurate comparision of the two things.

    So did they rule out ME/CFS too in their POTS group before they did this study? (i suppose they probably did not do so esp since so many in there had the tender lymph nodes and sore throat.. symptoms which would add to a ME/CFS diagnoses)

    I personally do think a pure POTS patient can be usually distinguised from a ME/CFS wth POTS person though most drs arent knowledgable enough to do this and too many get wrongly diagnosed or one of these things missed.

    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.

    yes certainly.

    POTS patients without ME/CFS can possibly be treated into functioning normal (not all of them but some)... this cant happen if the person has ME/CFS too.

    POTS fatigue is comparable to the fatigue found in many other serious illnesses, ME fatigue can be far worst then that. POTS doesnt have a delayed reaction with triggers.. so I wouldnt call in PEM as in what happens in ME/CFS, POTS the reaction is immediate with triggers. The history of symptoms will help tell apart.

    1/ Think about how your illness manifests as it can help you distinguish between the too.. do what u think as your POTS symptoms come on sudden to standing or does it come in hours after doing things even if u may be at resting in bed at that point. Laying down doesnt stop ME/CFS symptoms from flaring, they flare after exertion no matter what you are doing eg can suddenly flare while in bed while you were asleep if you've over done it earlier , POTS doesnt do this.

    2/ /CFS people have a wider range of symptoms then POTS and may have some abnormal findings found in ME eg for me my EEGS show non specific findings often found in ME, I have low cortisol findings, I have positive rombergs test which is common in ME.

    Some symptoms arent normal in POTS eg joint pain and sore throats (unless the person is carrying a coexisting virus. Note -vIruses can trigger POTS and start this illness in someone).

    Suspect ME if you have more symptoms then the common POTS ones which make sense in for just POTS eg POTS affects the autonomic system so symptoms which are caused through that system can be expected to be seen in POTS eg IBS and also symptoms from the low blood flow of POTS eg headache, dizziness, tiredness, weakness, blurred vision, brain fog etc etc u can all expected to be seen in POTS.

    Now though if someone had immune issues.. that would be more a ME thing though may be also found in POTS if the persons non ME/CFS POTS was virally induced... maybe an immune issue made suspectable to that? So you can see there is a lot of overlap and you really got to do quite a bit of thinking about it all the symptoms and also how it manfests to work out if a person has got ME/CFS and POTS or just POTS. Sometimes it can be easily figured out just on how it all manifests to triggers.

    If u can describe your experiences more some here can help you more to tell if u probably got ME/CFS with your POTS or not. Do u get sick immediately with triggers or do you have a delayed period of after you stop activity to when you get sick from it? Do you DOUBLE FLARE? eg flare immediately that would be the POTS coming in, and then hours later or even next day flare again even if then resting from what you did day before (or up to 48hrs before? that's the ME flare

    another thing. POTS flares calm down much faster then ME ones, you can lay down and start to feel a bit better. ME doesnt calm down like that, it just keeps further increasing when first laying down and can keep increasing into the next day while resting... ts a far more extended flare to triggers.

    I hope my post helps you to understand that they manifest quite differently (even with many of same symptoms)
     
    Last edited: Apr 19, 2017
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  11. charles shepherd

    charles shepherd Senior Member

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    PoTS and ME/CFS: Basic information and links from the MEA:

    1 The MEA also has a brand new information leaflet covering all aspects of PoTS in relation to ME/CFS:

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance/

    as well as a leaflet covering the management of orthostatic intolerance:

    http://www.meassociation.org.uk/shop/management-leaflets/orthostatic-intolerance-2/

    2 Information on POTS from the MEA purple book - clinical assessment section:

    Postural orthostatic tachycardia syndrome (PoTS) sometimes forms part of ANS dysfunction in ME/CFS.

    PoTs is defined as symptoms of orthostatic intolerance associated with an increase of heart rate from supine to upright position of > 30 beats per minute (or 40 beats per minute in the 12-19 year age group) or with a heart rate of > 120 beats per minute on standing, can occur in ME/CFS (Hoad et al 2008; Kavi et al 2016).

    In the recent British Journal of Cardiology review of patients with PoTS and their experience of healthcare in the UK, Kavi et al (2016) found that 81% of respondents were between the ages of 18 and 49 years and 92% were female.

    The most common symptoms at presentation were fatigue (91%), light-headedness, dizziness or presyncope (90%) and palpitations (86%). Syncope or blackouts were experienced by 58%.

    Other commonly presenting symptoms (in over 40%) included difficulty thinking (often described as brain fog), physical weakness, visual disturbances, breathlessness, vertigo, shakiness, chest pain, sweating, bloating, symptoms of anxiety, poor sleep, daily headache, acrocyanosis (purple-blue discolouration of hands and lower limbs), tingling in peripheries, nausea, abdominal pain, heat and exercise intolerance and ‘coat hanger’ pain (thought to be due to ischaemia of neck and shoulder muscles).

    Clinical evaluation should therefore include a response to standing.

    Research aimed at characterising ME/CFS patients with or without PoTS found that those with PoTS were younger, less fatigued, less depressed and had reduced daytime somnolence (Lewis et al 2013a). They also had greater orthostatic intolerance and autonomic dysfunction. Those with PoTS may require further investigation and consideration for therapy to control heart rate (Lewis et al 2013a).

    Further evidence relating to the important subgroup of ME/CFS patients who also have PoTS comes from Nijs and Ickmans (2013).

    For a review of PoTS, see Benarroch (2012) and Kavi et al (2016).

    NB: In patients presenting with chronic fatigue and/or orthostatic intolerance, low ferritin levels and hypovitaminosis D may be present, especially in those with postural tachycardia (Antiel et al 2011).


    3 Information on symptoms and diagnosis of PoTs from the new MEA information leaflet

    Why does PoTS sometimes affect people with ME/CFS?

    PoTS can affect people with ME/CFS, especially those in younger age groups and at the more severe end of the spectrum.

    This is because the ANS is commonly involved in ME/CFS – where the malfunction can cause what is called orthostatic intolerance (difficulty in remaining upright – as in PoTS) and cold hands and feet. The ANS also affects bowel and bladder control and may therefore cause irritable bowel type symptoms and ‘irritable bladder’ symptoms.

    Primary PoTS and overlap with other conditions

    Primary PoTS often has an abrupt onset and may follow acute infections, immunisations, surgery, pregnancy, or trauma – all of which can trigger ME/CFS.

    As with ME/CFS, there is evidence of an autoimmune component and there is a genetic component in some cases.

    PoTS is also more common in people who have hypermobile joints (which can also overlap with ME/CFS), people who are deconditioned after prolonged bed rest, diabetes, sarcoidosis, Sjogren’s syndrome, SLE/lupus, antiphospholipid (Hughes) syndrome, and mast cell activation disorder - which should be checke for this if flushing and allergies are present.

    What are the diagnostic symptoms and signs?

    Characteristic symptoms, which occur on standing and are normally relieved by lying down, include:

    ·fatigue or weakness (91%)

    ·palpitations or awareness of the heart beating (86%)

    ·dizziness (90%)

    ·feeling light-headed, pre-syncope/feeling faint (90%)

    ·sometimes actually fainting/syncope (58%), or having a transient loss of consciousness

    Percentages are taken from a PoTS UK patient survey.

    Other common symptoms, which occur in up to 40% of cases, include:

    ·nausea and other irritable bowel type symptoms

    ·headaches – which may be caused by lack of blood flow to the brain,

    ·sleep disturbance

    ·shortness of breath and chest pain

    ·visual disturbances – including blurring

    ·‘brain fog’/cognitive dysfunction – as occurs in ME/CFS

    ·‘coat hanger pain’ - which is thought to be due to poor blood supply to muscles around the neck and shoulder


    Acrocyanosis – a puffy bluish discolouration of the hands and feet that is caused by blood pooling in the veins occurs in around 50% of cases.

    Symptoms are often described as being more prominent on rising after waking up. They are frequently exacerbated by standing up too quickly, heat, some types of food or large meals, alcohol and stress. They are often exacerbated during infections and may be worse during menstruation.

    For some people, the disability caused by PoTS is considerable, especially when this is added to the health problems caused by ME/CFS. Patient evidence collected by PoTS UK indicates that 23% are wheelchair users and 37% are unable to work. Although severely incapacitated, PoTS patients often look well.

    Slide of acrocyanosis:

    http://mddk.com/wp-content/uploads/2015/11/acrocyanosis-pictures-2.jpg

    How is PoTS diagnosed?

    A diagnosis of PoTS is based on the characteristic symptoms and what is called a 10 minute active stand test and/or a tilt table test.

    The Active Stand Test: Under careful supervision, heart rate and blood pressure are measured after resting/lying down for ten minutes, then immediately upon standing still (unsupported with hands by sides) and after 2, 5 and 10 minutes. This test may bring on symptoms of PoTS and some people may faint. If the result is uncertain the test can be repeated on another occasion.

    Head-Up Tilt Table Test: This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 beats per minute within the first 10 minutes, this upright position can last between 10 and 45 minutes.

    The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure.

    The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed.

    If facilities are available, some patients are tilted after a carbohydrate drink (liquid meal challenge), exercise or heat.

    Serum catecoholamines should be checked in supine and upright positions, especially if a hyperadrenergic form of PoTS is suspected.

    A heart rhythm test/electrocardiogram test should also be arranged to exclude heart problems that can cause a tachycardia as well (eg inappropriate sinus tachycardia) and thyroid function tests.

    Other cardiac/heart tests – eg 24 hour heart rate and blood pressure monitoring, echocardiogram, autonomic function screening tests - may be required in more complicated cases.

    Unfortunately, many doctors still know little or almost nothing about how to diagnose PoTS and how to manage it. As a result, many people with PoTS are left undiagnosed, may even be misdiagnosed as having anxiety, panic attacks or hypochondriasis, or be labeled as ‘heart-sink’ patients.

    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
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  12. adreno

    adreno PR activist

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    My POTS symptoms can fluctuate quite wildly. Would this be the case if it's caused by neuropathy? Seems more of a functional rather than structural problem to me.
     
  13. TrixieStix

    TrixieStix Senior Member

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    Since learning about POTS not long ago and my doctor thinking I likely have it due to the symptoms I experience I am now wondering if what I've been assuming is always PEM is sometimes actually post-exertional POTS fatigue?? Although I do not think you can distinguish between the two solely on basis of if the fatigue/symptoms are delayed or not as some people's PEM is never delayed and always hits them quickly after exertion. My PEM has always been very immediate after exertion.
     
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  14. TrixieStix

    TrixieStix Senior Member

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    If someone has dysautonomia caused by neuropathy I don't see why it couldn't also be subject to symptom fluctuation.
     
  15. charles shepherd

    charles shepherd Senior Member

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    In very simple terms:

    Current thinking is that there are a number of mechanisms involved in the causation of PoTS, which include…...

    Some patients have peripheral denervation (neuropathic PoTS)

    Some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic PoTS)

    Some have PoTS that is dominated by features of deconditioning.

    CS
     
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  16. halcyon

    halcyon Senior Member

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    By calling it an -opathy, that leaves it open to being a functional nerve issue I believe (i.e. receptor blocking autoantibodies), doesn't necessarily imply permanent damage.
     
  17. AdamS

    AdamS Senior Member

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    Great question, couldn't agree more, there have been studies done on the cognitive impairments seen in ME & POTS patients and both were pretty similar from what I remember.

    Thank you!
     
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  18. AdamS

    AdamS Senior Member

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    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.
     
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  19. Binkie4

    Binkie4 Senior Member

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    https://www.actionforme.org.uk/uploads/images/2017/03/GP_webinar_template_letter.pdf

    @AdamS

    The above webinar is for clinicians but maybe you can work out how to finagle yourself an invitation. Sounds interesting but there is concern on another thread about the involvement of AfME. Am sure if you could get to listen, you can do so critically and ignore any rubbish.

    http://www.meresearch.org.uk/news/webinars-by-prof-newton/

    This link is to a series of simple utube webinars by Julia Newton in 2014 which at least indicates her approach. There's one on orthostatic intolerance but don't think there is a specific one on POTS.
     
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  20. Binkie4

    Binkie4 Senior Member

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