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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. ahimsa

    ahimsa Senior Member

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    Hi Allyson,

    I'm not Sushi but I hope it's okay if I post some links to Vanderbilt's web site. :)

    Listed below are some links to the Vanderbilt Autonomic Dysfunction Center. I don't know whether these links will answer any of your questions (I didn't see any reference to EDS, for example) but it's more food for thought. And it looks like some of them (e.g., the POTS page about subtypes) were updated fairly recently (Feb. 2013).

    Vanderbilt Autonomic Dysfunction Center - Home page:
    http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

    POTS information page:
    http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38847

    "POTS Subtype - Does It Really Matter?" - article:
    http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008

    Neurally Mediated Syncope information page (aka NMH, NCS, and other names):
    http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4789

    Note -- On the NMS page they only talk about those patients who have full syncope (fainting) in real life situations. They don't mention the subset of patients who faint every time on the tilt table test but who only get pre-syncope symptoms, and never full syncope, in day to day living.

    I hope this is helpful information! I think it shows that there are still a lot of different theories out there about the causes (not to mention the differences in naming and diagnosis!) for various types of autonomic dysfunction. For example, on the POTS page it says
    From this quote it would seem that they don't include NMS/NMH as a type of OI.

    Oh, they also had a link to Autonomic Disorders Consortium (ADC) web site - http://rarediseasesnetwork.epi.usf.edu/ARDCRC/ so I'm passing that on as well. I have not even had a chance to skim that one yet!
     
    Allyson likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    Alyson,

    You said

    "CHeny had no expalantion for the phenomenon and I have actuallly not heard another explanation that ticks all the boxes for causation."

    Have you actually asked him for an explanation? This doesn't sound like Dr Cheney to me. He always seems to have theories for ME and CFS related symptoms. Especially those which are heart related.
     
  3. Allyson

    Allyson *****

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    Hi X
    last info i had on this was his dvd lecture where he clearly stated that the reasons were unknown - i have not heard anything since that indicates he as an explanation.

    Have you heard of one?
    cheers,
    Ally
     
  4. Allyson

    Allyson *****

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    Thanks indeed for all that Ahimsa - that is terrific ..

    I will read through them and forward them on to my docs and get back to you with thoughts


    thanks again!
    Ally
     
  5. Allyson

    Allyson *****

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    Another POTs articel in NY times 2011 that I have just been sent
    posting link here for the record adn those who are interested.

    2011 POTS article by the NY Times: http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&fb_source=message&

    *Please note, there are some incorrect aspects of this article, such as stating that POTS will go away over time and that acupuncture is an approved treatment for patients. However, the article does have some good insight and it is nice to see that our illness made it in the news a few years ago!
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    One of his patients told me that he had explained OI and POTS to her. I believe diastolic dysfunction was involved but I don't remember the details.

    Sushi
     
  7. Allyson

    Allyson *****

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    Thanks Tania,

    but blood is a connective tissue and low volume IS posited as baing due to EDS for this reason.
    How do viral issues cause photophobia and hyperacousia? I ti s wellkknow ntht adrenaline causes them as part of the flight or fight response but I have never heard of them assocaiated with viruses before/
    CHeers,
    Ally


    This in from Janet thanks - sorryy no author listed

    Myths and Facts about EDS:

    Myths & Facts

    As with many disorders that have received little research, there are usually numerous false assumptions that arise. These are some that have been made about Ehlers-Danlos Syndrome (EDS). They false assumptions stem from a lack of understanding, education, and knowledge about this disorder. This section was created in hopes of clarifying some of these false assumptions.

    Myth:"You don't have stretchy skin,so you can't have EDS."

    Fact: Loose stretchy skin is "not" a distinguishing characteristic among all the types of Ehlers-Danlos Syndrome (EDS). There are several types of EDS, some with stretchy skin, others without. The presence or absence of skin hyperextensibility (stretchy skin) is probably a reflection of the underlying collagen (or connective tissue) that is altered or disrupted. For some forms of EDS, the gene and protein that are responsible for the disorder have been identified (for example, EDS type IV). For others (Hypermobility type), the underlying cause is unknown. The skin manifestations (stretchy and/or smooth, velvety) can range from mild to severe. The clinical diagnosis should be based on individualized characteristics.

    Myth: "Ehlers-Danlos is an auto-immune disease."

    Fact: No. An "auto-immune" disease is one that is defined as a disorder that results from disregulation of the immune system. The presence of an autoimmune response is signaled by the appearance of auto-antibody in the circulation. Since autoimmunity can affect any organ in the body (including brain, skin, kidney, lungs, liver, heart, and thyroid), the clinical expression of the disease depends upon the site affected. Virtually all autoimmune diseases are dependent upon the production of an abnormal population of T cells, one of the circulating white blood cells. Ehlers-Danlos syndrome is not considered an autoimmune disease.

    Myth: "Only certain ethnic groups are predisposed to Ehlers-Danlos Syndrome."

    Fact:: There is no known ethnic, racial, geographic or other population divide that appears to predispose to EDS or to different forms of EDS. All are vulnerable to being born with this disorder.

    Myth: "Pain "is not" associated with EDS."

    Fact:: Yes, it most definitely is. Pain is a common manifestation of EDS. It can range from mild to severe, and can become chronic. Frequently it is difficult to establish the precise anatomical localization of the pain. Individuals with Ehlers-Danlos Syndrome may experience pain - to greater or lesser degree. Joint pain is most commonly reported in the hypermobility EDS, in the classical EDS and others. As EDS is a disorder resulting from alterations or defects in connective tissue, it is possible that the weakness in connective tissue may cause chronic problems in joints, tendons, ligaments, bones, skin and other tissues that hold the body together, contributing to pain. The degree of pain and the location is not as predictable as one would expect, highlighting the need for an individualized evaluation and treatment for each patient.

    Myth: "This pain your feeling... is all in your head."

    Fact:: This comes directly from the experiences of many who suffer with EDS. Some of their physicians have practiced contempt and disregard, when it comes the their pain. There seems to be a pre-conceived cultural biases among some, especially when it comes to women in pain. Many have gone years without being properly diagnosed with EDS. With no significant major medical trauma, evident other than their hypermobility - Some physicians contribute their pain, to hormones, stress, or that it has to be in their heads. Often, their pain is dismissed and they are often labeled hysterical, malingerers, and/or drug seekers. Many have received referrals for psychiatric treatment. Those with EDS have legitimate pain.... It is not in their heads and it^s real. "Individuals with EDS experience frequent and severe pain throughout much of their lives. EDS should be considered in the differential diagnosis of chronic musculoskeletal pain."

    Myth: "You don't "look" like you have EDS."

    Fact:: What do we expect someone with EDS to "look" like? Does one have to have stretchy skin and be able to do ample "tricks" with skin and joints in order to look like one has EDS. There isn't a certain facial characteristic, or "look" to EDS. Except for some Vascular types, that will present with the listed facial characteristics, but some will not. EDS is a group of inherited disorders of connective tissue, not one disorder with a single expression. Many individuals with EDS, even those with the same clinical diagnosis, are dissimilar and cannot be easily distinguished from someone without EDS except by a physician familiar with the disorder. EDS needs an individualized diagnoses based on the characteristics/symptoms presented.

    Myth: "That's just the way you are." or "That's just the way you were born." or "I don't know why that happened." or "I never saw that before."

    Fact:: Based on the experience of people with EDS: Not unless there is a blatantly obvious defect or medical problem that jumps out to the physician. Or the blood work/testing comes back positive for a specific medical condition - Most EDSers have heard these words. If symptoms seem out-of-the-norm, unusual, not often seen, or the physician can not explain why, then, they should be investigated further - Especially if that patient is a child, or an adolescent, they should be referred to a Geneticist. Characteristics/symptoms of EDS seen (in children/adolescents/young adult) by physicians (inexperienced in EDS), that were overlooked and not pursued

    any further. Thin translucent skin, with veins easily seen (face,chest, abdomen, thigh), fragile skin, easy bruising, abnormal (widened, dystrophic) scar formation, muscle hypotonia, recurring hernias, hypermobility (shoulders, joints, hands), frequent joint (hip) dislocations/subluxation, chronic joint and limb pain, molluscoid pseudotumors, spheroids, tendon rupture, clubfoot, early onset varicose veins, arterial/intestinal/uterine rupture, arteriovenous fistula, pneumothorax/ pneumohemothorax, rectal prolapse, surgery complications (e.g., wound dehiscence, bleeding, recurrent hernias, skin gaping/tearing, poor wound healing).

    Myth: "Your just clumsy, that's all."

    Fact:: Based on the experience of people with EDS: They report that they were clumsy as children and some still are today. They always seem to get hurt very easily. Children with EDS illustrated a higher incidence of foot and ankle problems, due to ligamentous laxity. Some common problems reported due to hypermobility; ankle instability, clubfeet, a flat arch, intoeing and outoeing position. It has been said, "That an EDS child could trip over the patterns in a rug." If you notice that a child seems to get hurt (stitches, sprains, breaks, bruises, wide scars (atrophic papyraceous appearance) gaping wounds) more than other children, they should be evaluated by a Geneticist to see if they might have a connective tissue disorder.

    Myth: "It's only growing pains."

    Fact:: Many folks with EDS have been told that they just had "growing pains", some way into adulthood. And that they would grow out of it. "Growing pains occur in 20% of children aged 2 to 12. Usually, a doctor determines a child has growing pains only by eliminating other conditions." This diagnosis is made after ruling out all organic pathology: inflammatory/noninflammatory, infectious, post-infectious, traumatic, metabolic, tumoral, vascular, hematologic, orthopedic, and benign pathology of children." (Kohmen L, Magotteaux J. "Acute nocturnal and recurrent pain of the limb in Children." Rev Med Liege. 2004; June; 59 (6): 363-6) "Chronic frequently debilitating pain of early onset and diverse distribution is a constant feature in most individuals affected with different types of EDS." "Individuals with EDS experience frequent and severe pain throughout much of their lives. EDS should be considered in the differential diagnosis of chronic musculoskeletal pain." (Sachet.et.al -"Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" J Pain/symptoms/ management, 1997; Vol 14, (2), 88-93 see this article in Library section) Those with EDS experience a higher incidence of foot and ankle problems, due to ligamentous laxity. These problems can contribute to degenerative joint disease in the knees and hips. It seems logical that malalignment in the extremities could lead to abnormal forces on the joints and premature degeneration.
     
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  8. Allyson

    Allyson *****

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    ANd another form Janet thans - again no date sadly but there IS and email contact for anyone interesed

    The Ehlers-Danlos syndrome, a disorder with many faces.
    De Paepe A, Malfait F.
    Source
    Centre for Medical Genetics, Ghent University Hospital, Ghent University, De Pintelaan 185, Ghent, Belgium. anne.depaepe@uzgent.be
    Abstract
    ... The Ehlers-Danlos syndromes (EDSs) comprise a heterogeneous group of diseases, characterized by fragility of the soft connective tissues and widespread manifestations in skin, ligaments, joints, blood vessels and internal organs. The clinical spectrum varies from mild skin and joint hyperlaxity to severe physical disability and life-threatening vascular complications. The current Villefranche classification recognizes six subtypes, most of which are linked to mutations in genes encoding fibrillar collagens or enzymes involved in post-translational modification of these proteins. Mutations in type V and type III collagen cause classic or vascular EDS respectively, while mutations involving the processing of type I collagen are involved in the kyphoscoliosis, arthrochalasis and dermatosparaxis type of EDS. Establishing the correct EDS subtype has important implications for genetic counseling and management and is supported by specific biochemical and molecular investigations. Over the last years, several new EDS variants have been characterized which call for a refinement of the Villefranche classification. Moreover, the study of these diseases has brought new insights into the molecular pathogenesis of EDS by implicating genetic defects in the biosynthesis of other extracellular matrix (ECM) molecules, such as proteoglycans and tenascin-X, or genetic defects in molecules involved in intracellular trafficking, secretion and assembly of ECM proteins.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson
    There are many theories as to the reason for low blood volume. I think HPA axis dysfunction seems to be the one we hear most often.

    Photophobia and hyperacousia have been associated with an initial infectious illness and the domino affect through several systems that impact the brain and nervous system in ME.

    Sushi
     
  10. Sharon Lang

    Sharon Lang

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  11. Allyson

    Allyson *****

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    Hi Sushi,

    I am aware that there are many theories ; none have been proven or even investigated thoroughly and this one - from one of Australia's foremost University medical departments - seems a plausible basic one to me, and to many others.

    If the major veins in the abdomen do not constrict you are going to have problems getting blood to the brain and heart any time you are upright.

    Initial stages of a viral illness does not explain hyper acousia in someone without a viral illness.
    Nor why such symptoms whould persist for 10, 20 30 years of more.
    Nor why all symptoms are worse in many people after standing or sitting up and in the heat.
    Nor why symptoms sometimes disappear completely

    The theory as told to me by this medical professor on EDS does explain these things and many others.

    Furthermore this is a theory that is easily testable whereas no others are.

    I am sure i t does not apply to every one who has ME - but we have people with what may be many different illnesses on this forum.

    Already some are now being diagnosed with Lyme disease ( who thought they had ME/cfs) for one example.
    It amy be like MS where there are many different subtypes - as for cancer for that matter.

    At least 6 people I know of have now had definite diagnosis of EDS due to posts on this topic; many more have all the symptoms and are getting tested

    It has had over 16 000 Hits so faar so i think a lot of people find something plausible in it.

    There are going to be long term efect on the brain from it being deprived of blood - we do not know how extensive they are but crashes and brain fog are very likely manifestations to begin with - HPA Axis issues could well be others,

    Cheers and thanks again for the feed back

    Ally
     
  12. Allyson

    Allyson *****

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    Thanks Sharon - welcome to the forum

    and thanks Sharon/Sushi for that article - one I have not seen and looks to be very apposite.

    I will forward it to my GP and other medical professionals who are very interested in the topic.

    Cheers
    Ally
     
  13. Allyson

    Allyson *****

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    Thanks again had a chance to looka t thase and they are great thanks Ahimsa; here is another POTS page in Britain that i Think i got from one of your links there too - it includes a list of suitable aware doctors I note which is a good idea.

    http://www.potsuk.org/

    All the best,
    Ally
     
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  14. Sharon Lang

    Sharon Lang

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    Many persons with fibro have been misdiagnoses according to my neurosurgeon. They actually have EDS. EDS I s a pain condition. There are three common types, I is hyper mobility. Ii is skin and ii is vascular. All are chronic pain conditions. There is a definite link but no one is saying there is a causation. If you have EDS you do Not have FM.
     
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  15. Sharon Lang

    Sharon Lang

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    Good luck to you.
     
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  16. Sharon Lang

    Sharon Lang

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    Orthostatic intolerance is part of Eds. As well as exercise intolerance. Just like some persons with ME have FMS. some persons with mME have OI. Some persons have EDS. there is an issue with doctors, even rheumatologist s and neurologists being uneducated on EDS.
    http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf
    Here is the pain management brochure. It references OI and exercise intolerance.
     
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  17. Sharon Lang

    Sharon Lang

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    Chronic Fatigue in EDS [Rowe] (http://bit.ly/HQDNwk)
    • 273 patients with EDS
    • 77% severe fatigue
    • 57% reported fatigue as 1 of their 3 most important symptoms
    • Severe fatigue was more common in hypermobile than classical EDS (84% vs. 69%; P=.032)
    • Fatigue had a greater impact on daily function than did pain
    Fatigue is a frequent and clinically relevant problem in EDS (Voermans et al. Semin Arth Rheum 2010; 40:267-74) Chronic Fatigue Often Paired With Ehlers-Danlos Syndrome [Jancin] (http://www.ednf.org/index.
    php?option=com_content&task=view&id=1245&Itemid=88889208)
     
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  18. Sharon Lang

    Sharon Lang

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    Here are other overlapping symptoms..Joint Hypermobility Syndrome Pain [Grahame] http://www.ednf.org/images/stories/pdfs_medical/2010/2009_ Grahame_CPHR_hypermobility.pdf
    Types of pain in EDS: headache, musculoskeletal pain—acute and chronic, gastrointestinal/abdominal pain
    Headache in EDS and other Hypermobility syndromes: migraine, ‘low pressure’ headaches, ‘high pressure’ headaches, myofascial pain, sinus pain, temporo-mandibular joint problems, dental pain
    Musculoskeletal Pain in EDS and other Joint Hypermobility Syndromes: joint laxity predisposes to acute injury, muscle spasm in response to acute injury or as a means to stabilize unstable joints, myofascial trigger points develop in response to joint laxity, nerve impingement may result from disc disease or joint laxity causing muscle spasm as well as neuropathic pain
    Gastrointestinal Pain in EDS: dysmotility, constipation, irritable bowel syndrome [and food allergies], sphincter of Odi dysfunction
    Comprehensive Pain Management in Ehlers-Danlos Syndrome [Francomano] http://www.ednf.org/ images/2010conference/Handouts/Francomano_ppt_2_slides_per_page.pdf
     
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  19. Sharon Lang

    Sharon Lang

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    Wrong Diagnoses:
    Most people diagnosed with EDS have come the same long road where it seemed that nobody knew what was really wrong with you. Diagnoses of
    • osteoarthritis,
    • fibromyalgia,
    • lupus,
    • rheumatoid arthritis,
    • rheumatic fever,
    • multiple sclerosis,
    • “growing pains”,
    • and “it’s all in your head” are just some of them.
    Often people get several misdiagnoses before finally being correctly diagnosed with EDS.
    ©Ehlers-Danlos National Foundation, 2009
    3

     
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  20. Sharon Lang

    Sharon Lang

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    October, 2009

    Fatigue Is a Frequent and Clinically Relevant Problem in Ehlers-Danlos Syndrome.

    Summary of the Abstract

    Ehlers-Danlos Syndrome is a heterogeneous group of inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Fatigue and pain are associated features but have never been studied systematically. Our goal was to measure fatigue, its clinical relevance, and possible determinants.

    A questionnaire 273 individuals with Ehlers-Danlos Syndrome about the severity of their fatigue, functional impairment, physical activity, psychological distress, sleep disturbances, concentration problems, social functioning, pain, and disease-related factors.

    More than three-quarters of EDS patients were found to suffer with severe fatigue. Patients with severe fatigue are more impaired and report higher levels of psychological distress. The 5 possible determinants involved in fatigue are sleep disturbances, concentration problems, social functioning, self-efficacy concerning fatigue, and pain severity.

    This is the first study of fatigue and its possible determinants in EDS and shows that fatigue is a frequent and significant problem in those with EDS.
     
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