Is anyone else diagnosed with Ehlers-Danlos Syndrome/Strong link

Discussion in 'Fibromyalgia Main Forum' started by Rockchic, Dec 23, 2005.

  1. Rockchic

    Rockchic New Member

    Ehlers Danlos Syndrome is a very rare Genetic condition, and at at recent conference I went to over half sufferers also had 'Fibro'
    Mine is type III which means lack of collegen for healing (ie more bruising,fragile skin that doesn't heal,very slow fracture healing..) Also the main problem is hypermobile joints that dislocate easily.
    Does this 'ring a bell' with anyone?
    God Bless , Hope you find the peace of Christ this Christmas.
  2. tansy

    tansy New Member

    Hypermobility syndromes run in the family. My son has the classic easy disclocation and muscle injuries too, especially around the joints, but his bones heal faster than most; just as well in light of all his injuries.

    Do you also have the classic problems with limb position awareness; this is why many with hypermobility syndromes are clumsy or accident prone. This again became more marked for me due to the loss of fine motor control etc so common in these DDs and widespread sensory neuropathy which affects voluntary muscle movements.

    Merry Xmas.

    love, Tansy[This Message was Edited on 12/24/2005]
  3. sydneysider

    sydneysider Member

    A physio told me this month that I am hypermobile, so I have been researching this, and I found written on one website that 28% of people with fibro also have hypermobility of the joints.

    I do not pass the Beighton scale of hypermobility, but it looks like I may have a mild form, which is more common than true EDS. This may predispose people to skeletal damage.

    I have a damaged disk in my neck, and have also found that a percentage of FM people have cervical damage.

    Also, I believe that this condition may cause extra stretchiness in the arteries which may account for some of the weird sensations that I experience.

    I don't have the thin skin or any problem with wounds healing. However, it looks like I am developing osteoarthritis, and my joints have suddenly started cracking.
  4. ephemera

    ephemera New Member

    If you do a search on the titles of messages you'll find there's been an off & on thread over several years for these related problems. lots of us have them, not all have the diagnosis.

    best thought
  5. tansy

    tansy New Member

    Hi Sharon

    I have read problems with motor control mentioned in research on the brain and central nervous system; so this is part of the puzzle. As females we know that even the menstrual cycle can affect our fine motor control. The brain is very sensitive to body wide changes including a rise in cytokines. When my brain/central nervous symptoms become more severe my coordination and motor control gets even worse.

    I am understanding more in my own case through responses to various Tx whether they be good or bad, identifying inherited tendencies, and research. It can seem confusing because ME/CFS. Borreliosis/lyme, FM etc, cause body wide abnormalities and symptoms so it’s no wonder we often feel overwhelmed by the information overload and conflicting theories.

    Sharon my muscle and neurological problems are both central and peripheral; each can make the other more problematic. Various infections being found in these DDs can cause neurological and muscle symptoms, we often see reports of marked improvement once the pathogen load is reduced and the immune response becomes better regulated. Likewise the toxins being found, hence protocols based on those producing similar positive outcomes, mould is a particularly nasty biotoxin.

    Though I have more obvious peripheral signs I don’t expect these to apply to everyone, others consider their neurological symptoms to be purely CNS.

    My parents came over for Xmas lunch. Until recently my father was doing well then he went down with a virus in November and had his usual post viral problems; many here would recognise them but he does not have ME/CFS, FM or lyme disease. Usually these resolve and he remains resistant to everything going around for anything up to a year, instead now he has body wide inflammation and even more signs of a coagulation problem. My mother says the pain and overall stiffness are making him irritable and unhappy; his current predicament made me realise how far I have come in terms of similar stiffness and generalised joint pain.

    There are 4 of us having health problems related to an over reactive immune response and coagulation, but only 2 who have had ME/CFS or a similar illness. The 2 who became ill also inherited hypermobility syndromes from my mother’s side, it seems as though this combo is contributing to our problems. The other possible indicator is adverse events following vaccines, but in neither case did these trigger full blown ME/CFS etc.

    Are these factors the cause of my illness? I don’t know at this point but they do explain the severity of some of my symptoms and disability. I can treat other identified factors whereas there is no one size that fits all for ME/CFS atm.

    My neuropathies were first Dx as polyneuritis and mononeuritis multiplex complicating a viral infection. Since then ME and neuroborreliosis/lyme are amongst the explanations given; my spine is contributing as well.

    My EMGs indicated toxic myopathy to begin with; then myositis and myopathy with a few spinal lesions in the next 3 EMGs. A simpler test, similar to the one mentioned in one of the excellent articles you posted here, indicated perfusion and abnormal muscle function. Apart from a cervical spine MRI this year none of my neurological problems have been checked out for many years, though both the Gyn and ENT specialists I saw picked up obvious neurological deficits and the ENT even recognised classic indications of lyme disease (I have had Bell’s Palsy etc). So I ended up having to research a lot and rely on the doctor who Dx the borreliosis and other chronic infections; he is the only one so far that’s made any attempts to understand the connections.

    Since research, including Gow and Kerr’s recent changed gene expression work, keeps coming up with numerous physiological changes I feel some of our symptoms may have more than one factor contributing to them. Dr Vance Spence and other researchers dislike the current use of some CFS definitions, and the inevitable heterogeneity of patients given this Dx, hence their comments on the need for subsets to be identified.

    love, Tansy

  6. Rockchic

    Rockchic New Member

    ABsolutely-always labelled such a clumsy child, now my children are accident prone too/ My Dad always falling and injuring himself and bad joint pain - My Mum completely bed ridden in terrible pain now.
    Only when it started happening to my Children did we get given Genetic counselling and diagnosis!
    Good luck and God Bless
  7. Rockchic

    Rockchic New Member

    Dr Jonathon Forester MD wrote a book called 'Conquering Chronic Fatigue', covering also FMS Hypothyroidism Yeast overgrowth, Immune Fatigue, Endocrime fatigue.
    His suggestion is it is all related to neuropathy and neural damage..??
    Sorry if I am repeating old ground you've all covered,
    Been disabled for 18 years but just found this site.

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