1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

OI & Raynaud's symptoms?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by invisible ME, Mar 21, 2011.

  1. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    I've been wondering about the relationship between OI/dysautonomia and Raynaud's.

    If I understand correctly OI can be triggered by blood pooling in the legs, resulting in poor circulation of blood upwards (heart and brain). Raynaud's, on the other hand, seems to arise from a lack of circulation to the extremities. Is my (simplified) understanding of these phenomena correct?

    I have problems with both dysautonomia, and more recently, Raynaud's-type symptoms. I haven't been diagnosed with Raynaud's, but my sister has it. Her hands and feet are often purple and she needs special protective wear in cold weather. In my case, my feet, hands, and nose are almost always cold to the touch. My feet (esp. toes) are often white, and sometimes individual toes or (spots on toes) loose feeling. This in a fairly toasty apartment with warm chunky socks (albeit in Canada :Retro smile:).

    Any thoughts or suggestions? I'm wondering if these conditions might be related or, conversely, if treating one could negatively impact the other.

    Thanks!

    - invisible ME
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,577
    Likes:
    5,347
    Albuquerque
    I've noticed this relationship too. Though with treatments I have done both the OI and the "Raynaud's" symptoms are better.

    Best wishes,
    Sushi
  3. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I have what seems to be erythromelalgia (it is closely related to Raynaud's) and I am very intolerant to cold.
    I also had extreme vertigo/nystagmus. I could not move my head or get up too fast- the room would start spinning and then I would have severe nausea and feel like I was going to pass out.
    I also had dizziness and tinnitus. My GP started me on Lyrica (it did not work - too many side effects) and then made me switch to neurontin (gabapentin).

    It helped a lot.

    Before I would get an erythro flare twice a day. Now it's about half and not as severe.
    The vertigo stopped. The dizziness is back but I am in the middle of a severe relapse right now. I might have to increase my prescription.

    I'm not sure that it is prescribed for Raynaud's but it worked for me.
  4. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    Hi Sushi, Thanks for your input. Do you mind me asking what worked for you?

    Boule de fue,

    I am sorry to hear about your relapse. I wasn't familiar with erythromelalgia, but that sounds tough! I don't tolerate cold either. Once it gets in, it stays. If I'm out in the cold, I'll be cold to the touch for hours. Even a hot bath sometimes won't do the trick. Instead of warming me up, I just make the bath water cold!

    Several health care professionals have recommended I move to a warmer climate (i.e. outside Canada). The cold weather is terrible for my ME/FM pain. But I've read people on this forum who live in California saying they love the cold?? Maybe not this much cold though? That's the best thing about being housebound, it's much easier to manage my pain for this half of the year.

    I'm a bit confused. Did your GP prescribe Lyrica and neurontin for the OI and/or Raunaud's? Or was it for pain, and it's just happened to help. I've had some success with Lyrica for pain, without real problems with side effects. But it hasn't done anything as far as I can tell for the circulatory issues. I'm sorry you had such a difficult time with it. My experience with Cymbalta was awful, but others seem to have had success. Frustrating.

    Thanks again.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,577
    Likes:
    5,347
    Albuquerque
    Hi, I didn't so much treat the symptoms, as the whole ME/CFS situation and those symptoms also got better. The Simplified Methylation Protocol helped a lot, LDN, helped the whole situation. In the beginning when I was taking drugs, norepinephrine reuptake inhibitors helped, but I didn't want to take them long-term so I looked for deeper causes. I also worked a lot with getting rid of toxins and heavy metals.

    Sorry, I can't give you more specifics. I've done so many types of treatments and most of my symptoms got better.

    Best wishes,
    Sushi
  6. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    Thanks again, Sushi.

    Glad to hear you've improved so much!
  7. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    Rochester, New York
    Remember there can be two very different things going on, first orthostatic hypotension and second orthostatic hypertension. Most with hypertension are having an over sympathetic response, we have over constriction in our peripheries, we tend to pool blood in our splanchnic region. We continue to constrict while we standing, causing symptoms that look and feel very much like raynauds. Have you looked at Julian Stewart's research? He's found 3 different groups within POTS patients, two of which have over constriction in our peripheries. Here's the link if you're interested: http://www.nymc.edu/fhp/centers/syncope/index.htm
  8. WillowJ

    WillowJ Senior Member

    Messages:
    2,931
    Likes:
    2,361
    WA, USA
    I posted on this thread before but apparently that was one of my lost posts.

    Raynauds is not really a general circulation issue, but rather a vasoconstriction issue. A Raynauds attack takes place when the blood vessels inappropriately constrict.

    They do have medication if the condition is bad enough that it is causing blisters on fingertips or something like that. Otherwise, best way to treat is to keep as warm as possible--wear protective clothing such as gloves and keeping, for example, arms covered helps keep hands warm. When an attack happens, try warming with water but start with tepid water, as any sudden change will make things worse. Gradually ease the temp from tepid to moderately warm.
  9. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    Thanks for the info, Willow and todd. I'm looking into this. I'll be speaking to my GP in a few weeks, too. Hopefully she'll have some ideas.
  10. sandgroper

    sandgroper

    Messages:
    71
    Likes:
    35
    west australia
    I have recently been diagnosed with Ehlers Danlos Syndrome which causes a genetic predisposition to cfs. It seems from what I have read it also predisposes one to Raynauds and dysautonomia. My understanding is that the connective tissue defect that is the basis of the disorder is what causes the problem, though the exact mechanism is not yet clear to me.

    Sand
  11. ramakentesh

    ramakentesh Senior Member

    Messages:
    525
    Likes:
    81
    Raynauds can be caused by a variety of problems - most related to vasospasm or elevated assymetric dimethylarginine in the cutaneous peripheral vasculature.

    the type of raynauds that occurs in POTS is quite different. And there are a variety of very different mechanisms that can result in POTS and a raynauds-like condition:

    1. Reduced norepinephrine reuptake causes increased transduction of a1 peripheral (arms and legs) receptors (in the arms and legs) leading to excessive vasoconstriction, increased total peripheral resistance, possibly postural hypertension, reduced effectiveness of the skeletal muscle pump throuhg reduced leg blood flow, cerebral vasospasm and thus POTS and raynauds. Here vasodilation occurs in the stomach perhaps due to b2 receptor activity but this is speculative as some patients have reduced B2 sensitivity (and hypertensive responses to stress).

    2. Reduced angiotensin II catabolism leads to reduced neuronal nitric oxide availability, leading again to increased periperhal transduction and excessive vasoconstriction in the arms and legs and thus reduced blood flow. MSNA nerve firing rates in this form of POTS are highly elevated. it is tryly hyperadrenergic.

    3. Receptor hypersensitivy - same results.

    4. Parasympathetic withdrawal - similar but not identical results. Sympathetic excess, excessive vasoconstriction peripherally, sympathetic drive causes and cerebral autoregulation abnormalities.

    5. Even the form of POTs causes by distal patchy denervation, autoimmune damage and hand and feet vasodilation can cause raynauds - increasd adrenaline is used to attempt to vasoconstrict where normal a1 receptors are faulty or absense. This can cause excessive peripheral vasospams.

See more popular forum discussions.

Share This Page