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The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Tired of being sick, May 20, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    High guys,

    I visited a dermatologist today to get a diagnosis of my white blotches on hands, inside forearms, and inside of knees.

    I originally thought it was Vitiligo but I was wrong....

    Turns out I have livedo reticularis..

    So I did some research to see if this has anything to do with CFS/ME and this is what I found!!


    Do any of you all have livedo reticularis ?

    Here's a link to the full article
    The Importance of Orthostatic Intolerance in the CFS
  2. Valentijn

    Valentijn Activity Level: 3

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    I don't, but I do have the "collapse of pulse pressure during rapid standing", though it can also get quite low just sitting up all day during a bad spell.
  3. WillowJ

    WillowJ Senior Member

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    I have livedo reticularis, particularly if I've been standing or walking or sitting in a normal chair (without a footrest), dangling or extending my arms or legs, or if I'm cold.

    I have other signs and symptoms of dysautonomia also.

    I additionally have Raynauds' syndrome, which doesn't improve the circulation in my extremities.
  4. PNR2008

    PNR2008 Senior Member

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    I don't have livedo reticularis but I have POTS and Raynauds. I'll be having my fourth tilt table test in a week because my symptoms are much worse (5 ER visits, needed saline). All the previous tests were abnormal but I wasn't as sick with POTS, Inderal helped but now on midrodrine and that helps also, still I have to drink fluids constantly.
    ahimsa, kevinj, merylg and 1 other person like this.
  5. taniaaust1

    taniaaust1 Senior Member

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    I dont know if I have had it or not. I just looked at some photos of it http://www.bing.com/search?q=livedo reticularis photo&src=IE-SearchBox&FORM=IE8SRC and way back (first half of my ME years), a few times my legs looked a like how its appearing in the milder photos of it. Can that conditon come and go? If so.. maybe I have had it.

    I do have POTS, narrowing of the pulse pressure, large swings in pulse pressure etc...
  6. WillowJ

    WillowJ Senior Member

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    @PNR2008
    Hope you feel better and that they get your treatment sorted.

    @taniaaust1 seems to come and go for me.
  7. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I also don't but i have the acral vasoconstriction, hr swings, and raynauds
    merylg and Tired of being sick like this.
  8. peggy-sue

    peggy-sue

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    I had bad POTS when I was about 2-3 years in to being sick.
    It lasted 3-4 years.
    I don't have it any more.
    merylg and Tired of being sick like this.
  9. Tired of being sick

    Tired of being sick Senior Member

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    It has never left me since I noticed it my hands but ignored it in 2000..

    Now it is up to my biceps on both arms and on the inside of both knees(about a 6 inch patch)..

    Did it leave you when you were finally treated for Monophasic wave forms in blood flow?
    Last edited: May 23, 2014
    merylg and taniaaust1 like this.
  10. Tired of being sick

    Tired of being sick Senior Member

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    I was reading my last trip to ER records (thank God) when my disc in back broke and sequestered into my body.on March 14th of this year...

    And they did a Doppler sonogram on my right leg to check for blood clots..

    The impression was:
    Monophasic flow in right superficial femoral vein may suggest more
    proximal occlusion!

    I can not believe that My PCP never set me up with a Vascular surgeon!

    If I would not have went to records to get this report I would have never knew this!!!
    Moral of the story

    Never and I mean Never trust a Dr. to do his/her job.......

    We the ME/CFS patients have to literally be our own Dr.'s

    We are alone and alienated but this only makes us stronger!!

    PS

    I GOT MY SELF AN APPOINTMENT (ON MY OWN ) WITHOUT MY PCP
    WITH A VASCULAR SURGEON ON JULY 11th!
    Last edited: May 23, 2014
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  11. taniaaust1

    taniaaust1 Senior Member

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    I second that, everyone with ME/CFS should be getting hold of their test reports. Its only throu doing that did I find out years later, that had severe hypoglycemia twice showing up on my test results (doctor never told me, she told me to eat regularly but didnt tell me why she said that so I thought it was just a reuglar comment). There are doctors out there who think we carry "illness beliefs" so will not tell us our test abnormalities as they think they are going to encourage our ME/CFS.

    I also only found out by getting hospital records that I have abnromal blood clotting results, they hospital had put the cause down onto be medications I wasnt even on.. I was only taking supplements at that time (they obviously never looked at my records to see if their theory of the why I had abnormal results were right as just must of guessed at most likely cause so ignored the abnormality). I suspect this abnormality was due to my MTHFR mutation which I didnt know about at the time or hypercoagulation found in ME/CFS. (Ive now had this appear twice in blood clotting tests but its still not something which has been followed up).
  12. Hip

    Hip Senior Member

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    I have a very mild manifestation of livedo reticularis on some days, when my skin, particularly on my feet, looks slightly blotchy due to the uneven blood circulation beneath the skin.

    In case anyone is wondering what livedo reticularis looks like, see these images from Google. I am nowhere near the severity shown in these images.

    I also have almost constantly cold hands and feet, which I think is also related to circulation. Both my mild livedo reticularis and cold hands and feet appeared after I caught the respiratory virus that precipitated my ME/CFS. Of the friends and family who also caught the same virus, many also developed this cold hands and feet condition.


    Primary livedo reticularis and acrocyanosis are variants of Raynaud's disease — a condition involving reduced blood flow.

    The mechanisms driving primary livedo reticularis / Raynaud's disease include:

    • Increased activation of the sympathetic nervous system.
    • An impaired cardiovascular response to stress may play a role.
    • A local fault under the skin involving increased sensitivity to cold of the adrenergic receptors on the smooth muscles surrounding the arteries.
    • Vasoconstrictors such as endothelin, serotonin and thromboxane may play a role.
    • Deficiency or degradation of nitric oxide may be involved. This can be caused by oxidative stress.

    Reference: Mechanisms of Raynaud's disease
    Last edited: May 27, 2014
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  13. stevesayshi

    stevesayshi

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    I have it on my palms. Also intermittent Raynaud's, POTS, mild OH, balance problems, you know the drill.
  14. Tired of being sick

    Tired of being sick Senior Member

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    Correct me if I'm wrong but I think Orthostatic problems are mostly caused by being inactive or bed ridden for long periods of time.........?
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    For most of us here they orthostatic problems are one of the manifestations of ME--most ME patients have some degree of Orthostatic Intolerance. Some of the things involved: low blood volume, dysautonomia, and pathogens. Some have the added complication of EDS which affects blood vessels and vein valves in the legs.

    My OI came on suddenly in the midst of an active life-style that included a lot of sports like cycling.

    Sushi
  16. Valentijn

    Valentijn Activity Level: 3

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    You're wrong :p In my case it's due to low levels of norepinephrine, probably due to overexpression of ADRA2A which has been found to be excessive in ME patients after exertion. ADRA2A inhibits norepinephrine, and taking an ADRA2A antagonist (Yohimbe) or a norepinephrine reuptake inhibitor (Strattera) makes a huge difference for me.

    Additionally, orthostatic intolerance tends to become problematic, or suddenly worse, when there has been no reduction in physical activity. Mine started pretty early on, when I was still going to classes 4 days per week and volunteering on the 5th day. It abruptly gets worse for weeks at a time where I'm forced to lie down all day except for very quick and careful trips to the bathroom. Then it disappears just as suddenly, despite that I've been far less active than usual due to the OI itself.

    In ME/CFS, OI is a cause of disability, and not a result of inactivity.
  17. Hip

    Hip Senior Member

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    There are lots people that have orthostatic intolerance (OI) diseases without have ME/CFS, and these people can be pretty active. Orthostatic intolerance is caused by dysfunction of the autonomic nervous system (ANS). Dysfunction of the ANS is called dysautonomia. There is a forum for people with dysautonomia here: www.dinet.org, and if you read that forum, you will see that few of the dysautonomia patients there have ME/CFS.

    Very recently, a groundbreaking study has shown that there are autoantibodies blocking alpha 1 adrenergic receptors of the autonomic nervous system in OI patients who haver POTS (postural orthostatic tachycardia syndrome). POTS is the experience of rapid heart beat upon standing.

    These autoantibodies would interfere with the nerve signals transmitted along the autonomic nervous system, thereby preventing the the ANS from properly functioning. This means that the ANS cannot adequately respond to the large blood pressure shifts caused by standing up. It is the smooth and healthy functioning of ANS that allows the human body to gracefully shift from lying to standing without a hiccup. The ANS needs to automatically dilate or contract blood vessels by a muscular action in order to compensate for increases in pressure caused by gravity when you stand up. But once the ANS is compromised, it cannot do this effectively, and all sorts of OI symptoms can then manifest upon standing.

    If POTS is indeed caused by autoantibodies to the alpha 1 adrenergic receptors as this study indicates, POTS then is in fact an autoimmune disease, and may become treatable by immune therapies.




    From the ME/CFS perspective, the fact that POTS, which is often found in ME/CFS, appears to be autoimmune in nature does bolster the view that there are some autoimmune processes going on in ME/CFS patients.

    In fact, various studies have found a number of different autoantibodies in ME/CFS patients:

    • ME/CFS patients can have autoantibodies to: the muscarinic cholinergic receptor 1 (another ANS receptor), the mu-opioid receptor, and the serotonin 5-HT1A receptor. The muscarinic cholinergic receptor autoantibodies are thought to be a significant factor in the disruption of the hypothalamic-pituitary-adrenal axis in ME/CFS.

    • ME/CFS patients (and major depression patients) can have autoantibodies to phosphatidylinositol. Phosphatidylinositol forms part of the cell membrane, and also plays a role in cell signaling. Interestingly, many viruses up-regulate the body's phosphatidylinositol signaling pathway, because boosting this pathway promotes viral replication. So in this case, the phosphatidylinositol autoantibodies might conceivably be created by the body in order to try to block phosphatidylinositol signaling, and thereby reduce viral replication. But this is just my speculation.

    • ME/CFS patients can have autoantibodies to microtubule-associated protein 2 (MAP2). MAP2 is involved with the assembly of microtubules within cells, and one theory posits that microtubules play a fundamental role in generating consciousness in the brain.

    • ME/CFS patients can have autoantibodies to cardiolipin. Autoantibodies to cardiolipin are also found in antiphospholipid syndrome.
    Last edited: May 30, 2014
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From the Invest in ME conference going on right now--Mark tweeting:

    [​IMG]Phoenix Rising @aboutmecfs · 2h
    Up next: Professor Julia Newton. Autonomic Nervous System and ME.
    [​IMG]Phoenix Rising @aboutmecfs · 2h
    89% of ME patients have orthostatic intolerance. In all cases fatigue, severity associates with severity of increased OI.
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  19. xchocoholic

    xchocoholic Senior Member

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    I was wondering if hypoperfusion is what's behind some with OI feeling worse than others. It takes me an hour of being supine to recover. I can feel the blood returning to my upper body and my organs and muscles relaxing back to normal. My vision always gets distorted when I first lay down but then clears.

    If so, is the problem with our veins ? Mine used to roll everytime I had blood drawn. Now that's intermittent and seems to be worse if I'm dehydrated. Puking non stop will do that. Tmi. ;)

    My latest reaction to getting stuck was uncontrollable arm movement. It's some kind of vasovagal response.

    Do you have weak veins ?

    Tx .. x
    merylg and Tired of being sick like this.
  20. WillowJ

    WillowJ Senior Member

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    hope you feel better @xchocoholic . Being dehydrated is no fun.
    merylg and xchocoholic like this.

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