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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. ukxmrv

    ukxmrv Senior Member

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    Allyson,

    How do you feel in the morning after lying down (and hopefully sleeping) all night.

    I'm a bit pressed to understand how EDS could cause ME as ME has a history of epidemic type outbreaks. That is unless EDS does run in epidemics or some thing could cause it in a group of people in the same area at the same time?
     
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  2. sandgroper

    sandgroper

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    I am dx with Ehlers Danlos Syndrome. It took years to get the dx.....in fact only last year I got it. i was dx with CFS in 1995 after being unable to work for 2 years but having had time off work and symptoms for previous 10 years. In hindsight I can also see the being upright was a problem but it only became obvious when I had to sit down. Then I had to Lie down and then I started having fits and collapses if I did not get down.

    Dr Hyde's definition of ME put me onto the EDS. I do not get the swollen glands etc..that others get and I never identified as a viral type. So having EDS with POTS and ME is best dx I can come up with. No dx on its own makes sense though I am sure in future there will be a unique dx for this.

    I am not sure that my inability to exert comes from the blood pooling. That may have been caused by lack of blood damaging the brain perhaps. I am not sure about the symptom of inability to sustain muscle strength. I don't know if that could be attributed to blood pooling either.

    Its interesting that Peter Rowe noted a connection with EDS/CFS/ POTS back in 1999.
     
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  3. nanonug

    nanonug Senior Member

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    Both POTS and EDS are associated with mast cell disorders. And, in my opinion, ME/CFS is just undiagnosed mast cell activation syndrome. The connection between the three would then be some form of mast cell disorder.
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    PEM and OI are somewhat separate. The OI can be non-existent or 100% treated and over-using muscles will still cause crashes. I can crash while lying down and using muscles (I have done this via "guided meditation" as part of CBT-pretending-to-be-something-else). Also, with my OI treated, I can go out and about for hours to dinner, movies, etc, but slowly walking up a steep hill for several minutes will trigger a crash.

    OI makes me feel crappy when it hits, but it doesn't feel the same as a crash. Though a crash does seem to include intensified OI symptoms.
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From everything I have read (and from studying myself--I have EDs), I don't think EDs causes ME but is a predisposing genetic factor for some. I was obviously born with EDs, but ME developed later. I think that if those of us with EDs look back we will see that while we may have had some level of OI all our life (my vision used to black out when I stood even as an adolescent), our severe ME symptoms developed later.

    Just my take!

    Sushi
     
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  6. nanonug

    nanonug Senior Member

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  7. Allyson

    Allyson *****

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    Thanks Sandgroper (and every one for the interesting replies),

    also there is the factor of constant adrenaline releases which I can only imagine woudl have dire consequences for muscles and maybe the rest of the body.

    Would you have any reference for the Peter Rowe connnection please? I do not know his work.

    As for the infectious element: I get constant infections but no swollen glands; the recorded cluster outbreaks of ME MAY turn out to be Lyme disease or something with similar symptoms? ( I see that quite a few ME people in Australia now are being re-diagnosed as having Lyme disease after diffferent testing parameters are used here.)

    Quite a lot of people come down with (worse) ME symptoms after air flights and I wonder if tis could be due to some effect on the veins of prolonged episode of vasodilation - due to decreased air pressure and prolonged sitting - causing permanent or worsened damage to the veins?

    Ulitmately I suppose a lot of us have different symptoms from each other and I guess - as someone else has pointed out - we may be talking about several different diseases that have yet to be classified as such. The EDS thing really resonates for me however, and I think the connection between being upright and subsequent symptom onset has not been mentioned much or fully investigated.

    (Also I have a lot of hte other things that go with EDS - asthma, hay fever, varicose viens, history of migraines and a faint, family history and many family members who are Gorlin's sign positive.)

    I would love it if more people could pay attention to the effect simply of upright position and see what happens; eg the horizontal postures in yoga that Tania mentioned .....did you travel upright to get to the class? Did you walk there? that could be the cause of the symptoms rather than the yogo poses?.

    I have noticed that over the years I stopped using chairs at all at home - I had to use a recliner chair or couch.

    I suppose with all other theories on ME the question is : why do we have hours and sometimes days when we are perfectly normal and totally symptom -free? And I think the EDS can account this whereas most other theories can't.

    And yes in answer to question above I often wake up feeling lively about 3- 6 am (great !!!) and I am again more energetic in the evenings after about 6pm...if I have been lying down all day.
     
  8. ukxmrv

    ukxmrv Senior Member

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    That's really interested Allyson that you wake really lively. Maybe that would help people determine if EDS is a big factor for them as their main diagnosis?

    I'm very surprised that someone would be dx'ed with ME or CFS if they wake lively. Is it possible that you have been misdiagnosed all along? Was there a diagnostic criteria that was used to determine it then for you?

    My ME started with an acute viral infection. I'm worse in the mornings. Lying down during the day does help but not in any dramatic way.

    Not discounting EDS as a factor in people developing ME of course. I am hypermobile and have POTS so this thread is of great interest to me.
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    This has been investigated a great deal by autonomic specialists. The "bells and whistles" type Tilt Table Test is an example of studying this.

    Sushi
     
  10. Allyson

    Allyson *****

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    Yes I know tha OI has been investigated somewhat - though not really a lot; many doctors have never heven heard of it; I mean uptright in relation to ME and the effect of upright position on ME symptoms and as a causative factor in ME.

    You will note people - myself included - never mention lying down as treatment option for ME even though I imagine it is the first thing people do when they crash, and I fo rone need to stay lyinhg down most of the time for the duration of a crash. Alos I lie down the day before I need to do some thing.
    Once I have started observing it I realise a definite correlation between symptoms and being upright the day before and so far i have found no studies or papers that deal with this in relation to ME.
     
  11. Allyson

    Allyson *****

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  12. Allyson

    Allyson *****

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    sadly i only awake lively at about 3 or 5 am and it wears off within an hour or so - so it is most ly a state of mind as I stay in bed at that hour and try and get back to sleep; then I am usually not so well next time i wake at about 9 or 10 and am more energetic at about 7 pm on for a few hours ...of course none of this applies if I am crashed, in which case I cannot get about much at all for several days; but at the moment I am lying down most days and that is the pattern that is emerging.
    I have been diagnosed by two ME specialists - one at a public hospital and another a specialist with over 25 years in the field and I have nearly all the symptoms so i think the diagnosie is accurate; I am just wondering now ( after about 3 years of almoft full-time informal research of ME) if EDS may be causing the same illness or all the same symtoms as I have been diagnosed wit type 3 EDS as well by an OI specialist- who happens to think they are the same illness, ie ME and EDS.
    thanks everyone for hte continued interest; another time i note i feel unwell is after meals ...when the blood is going to your stomach to aid digestion, so less available for the brain and heart again.
     
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  13. Allyson

    Allyson *****

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    ukx if you are hypermobile that is really often a major symptom of EDS as it is a sign of connective tissue disorder; are you able to see anyone about it as the wiki site is inadequate and it is only really a few specialist i think who know about it in much detail. Do you have anyuof the other symptoms I mentioned early ...allergies excema hay fever migraines, faints etc
    apparently a faint at about 12 -13 and migraines at about 17 are a common picture for this illness - EDS; i do not know why, but i had both, in addtion to easy bruising which i could imagine would be part of it if capilliearies are weak too.
     
  14. Allyson

    Allyson *****

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    as for PEM I dont think that has been studied much either.
    I used to think it was mainly muscular but once i started on d-ribose the muscle aches went away and a lot of it seems to me to be swollen limbs esp feet claves and ankles- you feel like you need a foot massage and need to elevate your feet
    Another big component of it is headache and brain fog ...like a hangover, this could be result of lack of blood supply to the brain
    THe muscles too might not get enough circulation when they need more .. and /or the constant adrenaline would have an effect on muscles; exercise would also require even more adrenaline than we usually produce ( ie a compounded effect) and I can't even imagine what that amount of adrenalin in your sustem for hours at a time would do...hold on , yes i can.. maybe cause PEM.
     
  15. ukxmrv

    ukxmrv Senior Member

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    Hi Allyson, I was diagnosed with POTs using the poor mans version in the mid -late 90's by a doctor with an interest in ME. This was just using the lying down/sitting up and standing blood pressure/HR mthod. Then again by a CFS doctor who uses a HR monitor. i've never had a tilt table test as never bothered.

    POTs and OI was very well talked about in relation to ME and CFS in the late and mid 90's. Also low blood volume. Most recently Dr Cheney has been looking at heart problems in his patients (he spoke on it during last years IiMe conference) and Dr Enlander does a heart test on some of his patients.

    When patients developed the concept of pacing in the 80's we used something called "agressive rest therapy" which meant resting as much as possible to conserve strength and especially during crashes.

    I'm really not sure what a diagnosis of EDS would offer me? I have viral symptoms as the main part of this disease.For EDS to be really useful for me there would need to be a treatment (one that I wasn't already doing) anf it would need to explain all of my ME symptoms and that would become my dx. I'm happy to be dx'ed with anything else but it needs to be useful and to fit.

    Seeing doctors causes such downturns in my health I will only do it if I cannot avoid it...

    Allyson, I'm curious to know why you wake up well and then deteriorate whilst lying down? How does this fit in with the theories.

    It doesn't make sense for ME (as described by Ramsay and documented in outbreaks in the 20th centure) to be the same as EDS? I hear that this is the opinion you are being given by these experts in EDS but aren't they really talking about Chronic Fatigue? ME isn't the same as CF.

    PEM has been the subject of papers by the Lights, the Pacific Group and Dr Klimas. Changes to the immune system after activity etc.

    Do you know if EDS does this as well?
     
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  16. ukxmrv

    ukxmrv Senior Member

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    PEM has been the subject of papers by the Lights, the Pacific Group and Dr Klimas. Changes to the immune system after activity etc.

    Do you know if EDS does this as well?
     
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  17. ukxmrv

    ukxmrv Senior Member

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    Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome.

    Rowe PC, Barron DF, Calkins H, Maumenee IH, Tong PY, Geraghty MT.


    Source

    Department of Pediatrics, Center for Hereditary Eye Diseases, Wilmer Eye Institute, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.


    Abstract

    OBJECTIVE:

    To report chronic fatigue syndrome (CFS) associated with both Ehlers-Danlos syndrome (EDS) and orthostatic intolerance.

    STUDY DESIGN:

    Case series of adolescents referred to a tertiary clinic for the evaluation of CFS. All subjects had 2-dimensional echocardiography, tests of orthostatic tolerance, and examinations by both a geneticist and an ophthalmologist.

    RESULTS:

    Twelve patients (11 female), median age 15.5 years, met diagnostic criteria for CFS and EDS, and all had either postural tachycardia or neurally mediated hypotension in response to orthostatic stress. Six had classical-type EDS and 6 had hypermobile-type EDS.

    CONCLUSIONS:

    Among patients with CFS and orthostatic intolerance, a subset also has EDS. We propose that the occurrence of these syndromes together can be attributed to the abnormal connective tissue in dependent blood vessels of those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures. This in turn leads to increased venous pooling and its hemodynamic and symptomatic consequences. These observations suggest that a careful search for hypermobility and connective tissue abnormalities should be part of the evaluation of patients with CFS and orthostatic intolerance syndromes.
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    Maybe the effects of standing in ME patients aren't highlighted so much in Australia? My testing really did investigate the effects of standing on my ME symptoms, thoroughly and systemically. My doctor was very clear that standing would make my symptoms worse--and certainly recommended lying down when it was possible. He even told us to lie down in a store if our symptoms were exacerbated by shopping (guess that should be WHEN rather than if! :()

    PEM is pretty thoroughly investigated too.

    It's just that many doctors aren't aware of this research and the testing options available. Many ME specialists prescribe a TTT as part of testing, and when done with all the "add-ons" appropriate for ME, it is a pretty comprehensivesystemic test on the effects of standing.

    In your case, since you would have had EDs all your life, was there a time earlier in your life when you didn't have all the ME symptoms you have now? That is one of the factors that doesn't fit for me--I had EDs from birth but ME developed much later, and I do have a lot of viral and bacterial infections.

    How does this fit in your case?

    Best,
    Sushi
     
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  19. Allyson

    Allyson *****

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  20. ukxmrv

    ukxmrv Senior Member

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    Allyson, so you wake up at 3-4am feeling good, then do you lie in bed waiting for the rest of the world to wake up or do you get out of bed, potter around and then run out of steam.

    It's the lying down part I am trying to understand in relation to your EDS and old ME dx. Are you lying down between 4-8am? If you are lying down what does that say about the EDS diagnosis as being your primary diagnosis. Any idea why you feel better at 7pm and what does your doctor say about this.

    Waking feeling wonderful is not a hallmark of CFS or ME. It would need a good clinican to analyse the patient and see if they had other things going on here that would make them the exception and still get a CFS or ME dx.

    The descriptions of CFS usually contain the point "not relieved by rest". You seem to be saying that you are relived by rest or is it too soon to know? When we spoke about a.r.t and ME it wasn't relieving symptoms it was resting up to try and get a tiny bit of energy back, to stop doing further harm and to help get over viral symptoms caused by exertion.

    There seemed to be a concensus in CFS doctors after the initial research that POTS, OI and EDS could be a feature with patients but that this did not explain all their symtoms. If they do explain all of the patients symtoms then the CFS or the ME is a misdiagnosis.

    Sorry about the questions. Really trying to understand your case. Forums can be a horrible way to discuss things.
     
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