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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. Allyson

    Allyson *****

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    in from ans EDS post - thanks Janet !

    Urinary incontinence and pelvic organ prolapse in women with Marfan or Ehlers Danlos syndrome.

    Carley ME, Schaffer J.

    Source

    Department of Obstetrics and Gynecology, University of Texas Southwestern Medical Center, USA.

    Abstract

    OBJECTIVE:

    This study was undertaken to determine the prevalence of urinary incontinence and pelvic organ prolapse in a cohort of women with either Marfan syndrome or Ehlers-Danlos syndrome. Study Design: Female patients with either Marfan syndrome or Ehlers-Danlos syndrome were identified through a medical records search at two urban hospitals. Each patient's medical record was reviewed, and the history of pelvic organ prolapse and urinary incontinence was obtained through telephone interview.

    RESULTS:

    Twelve women with Marfan syndrome were identified. Among these women 5 (42%) reported a history of urinary incontinence and 4 (33%) reported a history of pelvic organ prolapse. Eight women with Ehlers-Danlos syndrome were identified. Among these women 4 (50%) reported a history of urinary incontinence and 6 (75%) reported a history of pelvic organ prolapse.

    CONCLUSIONS:

    Women with Marfan or Ehlers-Danlos syndrome have high rates of urinary incontinence and pelvic organ prolapse. This finding supports the hypothesized etiologic role of connective tissue disorders as a factor in the pathogenesis of these conditions
  2. Allyson

    Allyson *****

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    In from an EDS page BALANCE AND FALLS


    QUOTE
    What do you think about this ? I came across this article on the fibromyalgia support page and was slightly disturbed that EDS was never mentioned. I was told hyper mobility is not a diagnosis by itself. Humm?? ...... I seen way too many posts of women describing EDS. I was misdiagnosed with fibro for many years before I was taken seriously and landed in with a geneticist. UNQUOTE

    Hypermobile fibromyalgia patients displayed greater balance problems
    Ulus Y. Turkish Journal of Rheumatology. 2013;28:10-15.

    ... April 8, 2013
    Patients with fibromyalgia and hypermobility had greater balance problems than those without hypermobility, and they experienced significantly more falls than healthy controls in a recent study.
    Researchers in Turkey conducted a retrospective study of 60 women with fibromyalgia and 30 healthy controls (mean age of all participants, 41.8 years) and assessed their balance and the impact it may have played on falls. Excluded from the study were patients who had undergone joint replacement, experienced stroke or had other conditions potentially affecting their balance within the past year.
    The fibromyalgia group was divided into patients with hypermobility (n=30) and those without the condition (n=30). Researchers recorded outcome measures for disease duration, pain severity using visual analog scale (VAS) and disease activity based on the Fibromyalgia Impact Questionnaire (FIQ) among this group.
    Controls and fibromyalgia patients were assessed for incidence of falls in the previous 6 months, performance as measured by the 6-minute walk distance test (6MWD), balance using the one-legged balance test with eyes open and the Berg Balance Scale (BBS), and hypermobility determined by Beighton criteria.
    Disease duration (P=.982), number of falls (P=.868) and VAS (P=.835) and FIQ (P=.515) scores were not significantly different between fibromyalgia groups. Patients with hypermobility had more falls than controls (P=.048), but the difference was not significant between fibromyalgia patients without hypermobility and controls (P=.055).
    Although hypermobility did not significantly affect the number of falls (P=.159) or 6MWD test (P=.825) in univariate analysis, balance tests were significantly associated with it (P<.001).
    “It can be suggested that [fibromyalgia] patients may have balance problems compared with healthy subjects and that hypermobility may have a negative effect on balance in these patients,” the researchers concluded. “In addition, it is known that the risk for falls increases dramatically with age. To clarify the impact of balance and hypermobility on fall frequency, future studies [that involve both sexes and] older [fibromyalgia] patients should be undertaken.”
  3. Allyson

    Allyson *****

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  4. Allyson

    Allyson *****

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    This in from RA WInters - welcome to the forum RA and thanks for the interesting feedback!

  5. Allyson

    Allyson *****

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    Hi all,

    I got this message as a PM but answer it here anonymously with permission as a lot of people ask the same kind of things and i have answered them in PMs but then others miss out on the info, So if i post it here everyone can see it.

    quote

    Hi Ally, thanks for all your support. With EDS do your joints click. I had a look at some of the pics and I can do some of those hypermobility things but I find that I have really bad tmj ( my mouth can no longer eat apples for instance I have to cut them up) and I have always had 'clicky' joints in my fingers and ankles especially. I have always had weak ankles. Why didn't the rhuemy check me for this?

    unquote


    My answer:
    HI yes, TMJ is a typical symptom of EDS - I have that too - as are clicky joints and any hypermobility - though you do NOT need to be hypermobile to have EDS 3 - even thought some call it HMS - hypermobility syndrome - a shame as many miss diagnosis because of that.

    Alas a lot of docs just do not know about EDS and many think it is a "rare" disease so do not look for it. In fact it is now thought to be quite common - my doc says he is seeing "The tip of the iceberg" ATM.

    It is like ME alas - you need to see a doc who knows about it for them to be able to diagnose it. So many docs still say that ME/cfs all in your mind - ie does not exist- and so will not diagnose i or even condsider it as an option.

    Like ME, POTS and OI - which are also common in EDS - it is one that is just often missed in the diagnosis. I was lucky to (finally) see a doc who knew aboutit because he is at the forefront of medical research in this field. That is why I pass the info on here - it took me 25 years to find out and I hope to save others that pain and time.

    i repost this as it is apropos-

    World-renowned EDS Expert Dr Rodney Grahame points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (fibro,ME/ chronic fatigue syndrome, etc.). - (I have not read the link yet)

    See: http://tinyurl.com/cc5qk57
    MishMash and merylg like this.
  6. Allyson

    Allyson *****

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    The most exciting phrase to hear in science, the one that heralds new discoveries,
    is not "Eureka!" but "that's funny..."


    -Isaac Asimov



    A
    ukxmrv likes this.
  7. Allyson

    Allyson *****

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    Someon on another forum who hajust realised she likely has EDS too found this link and sent it
    - it is rather general but just posting it here for interest as it is out there.

    http://www.thirdage.com/hc/c/ehlers-danlos-syndrome-symptoms

    interesting that i s claims long sightedness cna be due to EDS too - I am long-sighted as well.
  8. Allyson

    Allyson *****

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    And lso that it cites scleral weakness; when i had bad migraines the sclera of the eye on the affected sid e would all swell up around the pupil I never knw why ... this may expalin it.

    Also I moved this comment

    For those of you who follow cricket there is an Australian cricketer Nathan Bracken who retired very young - ? aged about 26 - due to ligament injuries

    A friend showed me a u tube clip of him playing this morning - vey tall and thin (so possibly Marfan's??) and when he moves he is bending wildly in all directions - 99 percent sure he is hypermobile

    Another casualty of EDS?

    DOXIMITY
    and i saw this and thought it interesting - wll speed up research i hope

    A survey of physicians last May by Epocrates inc., which develops medical reference apps for physicians, found that 82% were using social networks to engage with other physicians, while just 8% were doing so with patients.

    Saroj Misra, a Warren, Mich., family physician, saw a patient with a fracture last year and used Doximity, an online professional physician network, to send a question to a medical-school classmate who is an orthopedic surgeon. His friend suggested a certain type of splint and urged that the patient follow up with a local orthopedic surgeon. It took just "a few minutes" to get the advice via his smartphone, Dr. Misra says. "That is awesome."
  9. Allyson

    Allyson *****

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    here is a good page which i think is new for us


    http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
  10. taniaaust1

    taniaaust1 Senior Member

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    Possibly we are affected by the heat so bad due to the low blood volume (the blood comes to the surface to try to cool us down, taking blood away from the brain in the process). Viral issues can cause photophobia and hyeracousia (and also may leave one with POTS..so affect the blood volume too).
    Allyson likes this.
  11. Allyson

    Allyson *****

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    Yes agree Tania thanks nd blood is aconnective tissue too so is likely to ba affected by EDS. I have had my blood folume measured and am awaiting reslutls.
    I wonder if an MRI done on a tilt table could demonstrate blood flow or lack of it?

    Egdo a scan lying down then tilt the table up and measure again.

    My BP dropping 20 points is indicative of something other than low cblood volume however - soemthing sudden that happens when you stand - similar to what Dr cheney has observed to be occurrinng though he did not posit stretchy viens a s apossible cause I do no think... it seems quite a logical explanation to me in a field where logical explanations have been sadly thin on the ground.
  12. Allyson

    Allyson *****

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    from Mark Martino, EDNF - thanks Mark for you constant generosity in sharing knowledge.

    Program Nr: 362 from the 1999 ASHG Annual Meeting http://www.ednf.org/index.php?option=com_content&task=view&id=2108

    Gastroesophageal reflux and irritable bowel syndrome in classical and hypermobile Ehlers Danlos syndrome (EDS). H.P. Levy1, W. Mayoral2, K. Collier2, T.L. Tio2, C.A. Francomano1. 1) NHGRI, NIH, Bethesda, MD; 2) Georgetown University Medical Center, Washington, DC.

    Rupture of the GI tract is a known manifestation of vascular EDS (type IV), and diverticuli and hiatal hernia have been reported without specification of EDS subtype. However, the spectrum and frequency of GI complications in classical (types I and II) and hypermobile (type III) EDS have not been established.


    We reviewed the charts of 51 EDS patients for GI findings. 38 patients had classical, and 13 had hypermobile EDS. Age range was 8 to 78 years. Sex ratio was biased, with F:M=41:10 (30:8 classical and 11:2 hypermobile). Gastroesophageal reflux (GERD) was suspected clinically in 26 of 45 patients [58%] for whom data was available (17 of 32 classical [53%] and 9 of 13 hypermobile [69%]). Irritable bowel syndrome (IBS), defined as chronic intermittent diarrhea and/or constipation, with or without abdominal cramps, was reported by 24 of 43 patients (56%) for whom data was available (18 of 30 classical [60%] and 6 of 13 hypermobile [46%]. Also, 4 patients (2 classical, 2 hypermobile) had endoscopic diagnoses of non-specific inflammatory bowel disease (IBD); thus 28 of 47 informative patients [60%] had IBS or IBD. Overall, 34 of 47 patients [72%] had any combination of GERD, IBS & IBD. If all missing data was considered negative, the overall prevalence would be 26 of 51 [51%] for GERD and 28 of 51 [55%] for IBS/IBD.


    EDS patients may have chronic pain, leading to NSAID-induced gastritis mimicking GERD or narcotic-induced symptoms mimicking IBS. Alternatively, EDS may cause reduced lower esophageal sphincter tone, increased distensibility, and/or decreased GI motility, resulting in GERD and/or IBS. Autonomic dysfunction could cause both GERD and IBS. 10 patients had suspected or confirmed cardiovascular autonomic dysfunction; 9 also had GI complications.

    We conclude that GERD and IBS are common complications of classical and ... [EDS type III], and should be sought and treated in these patients.

    z
  13. Allyson

    Allyson *****

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    I just found a link for an EDS support group in Australia for anyone interested

     

    EDS Australia

    http://edsaus.ning.com/
  14. Allyson

    Allyson *****

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    Hi Sushi ,
    I just saw this question form ages ago that i never reponded to - well varicose veins are one of the defining symptoms and i think they are cause by defective valves. The more i look at EDS list sf symptoms now the more overlap I see - they have all we including gut issues - have plus some have joint hypermobility. Just got sent this article from Vanderbilt Uni who I know is doing research into POTS - including studies on to IV saline therapy to treat it.


    Norepinephrine transporter A457P knock-in mice display key features of human postural orthostatic tachycardia syndrome.

    Shirey-Rice JK, Klar R, Fentress HM, Redmon SN, Sabb TR, Krueger JJ, Wallace NM, Appalsamy M, Finney C, Lonce S, Diedrich A, Hahn MK.

    Source
    ...
    Vanderbilt University School of Medicine, Nashville, TN, USA.

    Abstract

    Postural orthostatic tachycardia syndrome (POTS) is a common autonomic disorder of largely unknown etiology that presents with sustained tachycardia on standing, syncope, and elevated norepinephrine spillover. Some POTS patients experience anxiety, depression and cognitive dysfunction. Previously, we identified a mutation, A457P, in the norepinephrine (NE) transporter (NET, SLC6A2) in POTS patients. NET is expressed at presynaptic sites in NE neurons and plays a critical role in regulating NE signaling and homeostasis through NE reuptake into noradrenergic nerve terminals. Our in vitro studies demonstrate that A457P reduces both NET surface trafficking and NE transport and exerts a dominant-negative impact on wild-type NET proteins. Here we report the generation and characterization of NET A457P mice, demonstrating the ability of A457P to drive the POTS phenotype and behaviors consistent with reported comorbidities. Mice carrying one A457P allele (NET+/P) exhibited reduced brain and sympathetic NE transport levels compared to wild-type (NET+/+) mice, whereas transport activity in mice carrying two A457P alleles (NETP/P) was nearly abolished. NET+/P and NETP/P mice exhibited elevations in plasma and urine NE levels, reduced DHPG, and reduced DHPG/NE ratios, consistent with a decrease in sympathetic nerve terminal NE reuptake. Radiotelemetry in unanesthetized mice revealed tachycardia in NET+/P mice without a change in blood pressure or baroreceptor sensitivity, consistent with studies of human NET A457P carriers. NET+/P mice also demonstrated behavioral changes consistent with CNS NET dysfunction. Our findings support that NET dysfunction is sufficient to produce a POTS phenotype and introduces the first genetic model suitable for more detailed mechanistic studies of the disorder and its comorbidities.
  15. Allyson

    Allyson *****

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    Just re- reading you post Ca fs thanks, and one of the things the genetic clinic at Royal Melbourne Hopsital was especially interested in for EDS was translucent skin that you can see the veins through on any part of your body ; I have that too but of course as i have away had it took it fro granted. Easy bruising seems to be coming up as a common symptom of EDS too and "all" gut issues.


    I tried florinef and it did not work for me at all - just made me feel bloated; I treid it twie then gave up.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    Interesting article but it is about POTS and I don't think you can equate EDs with POTS. In a percentage of patients there is a relationship, but in others there is not. Vanderbilt has been looking into this aspect of POTS for quite a while.

    Sushi
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  17. Allyson

    Allyson *****

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    Thanks,
    \ i have been thining about it Sushi..... if POTS causes dizziness and many the other symptoms.... what causes the POTS?

    EDS III could be a plausible cause of POTS if not the only one. ie veins that do not contract enough to get sufficient blood up to your brain when upright.

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

    DO you have any other vanderbilt research links then please?

    If you cured all orf your pots symptoms would you be happy ... would the "fatigue" (debilitating exhastion) go away ...if not .....what is causing that? No one has put up another good expalnationthat I have seen....that expalisn why i lie down for a few days my syptoms disappear and do not return as long as I stay horizontal....
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    I don't have POTS, I have OI--probably neurally mediated hypotension. It has improved greatly with methylation therapy and treating pathogens. I'll always have EDs III, but I didn't always have OI--it showed up within a week and I feel that I am on the path of reversing it by treating pathogens and biochemical imbalances.

    While OI has contributed to fatigue, other things seem to be much more related to fatigue--again, the most critical thing seems to be how active pathogens are. When pathogens get knocked down, OI disappears for me and I have much more stamina.

    Somewhere I have references to a lot of the research from Vandy in the last 10 years, but don't have time these days to pull it up. I think you would find a lot of it on the Vandy site or in PubMed.

    Sushi
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  19. Allyson

    Allyson *****

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    Oh when and how did you get the diagnosis of EDS III Sushi and how did you get diagnosed Sushi?
    I would have thought OI was a natural corrollary of EDS 3 eventually for most people, though they may not be aware of it.
    DO you have ME as well as EDS III then?

    Cheers,
    Ally
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I have ME and EDs III.

    EDs was diagnosed by an autonomic specialist in 2006 by a physical exam and history. This diagnosis was confirmed by two other doctors. ME was also diagnosed by several doctors, one being one of the top specialists in ME. This was diagnosed through history, symptoms and many lab tests. (lots of pathogens and abnormalities found)

    For me treating ME has greatly reduced OI. Others here have also reported that anti-viral and anti-microbial treatments have reduced or eliminated their OI.

    Since ME is a very complicated syndrome, there are numerous domino effects that take place over the years for patients who have not had adequate treatment. I was one of those who went untreated for many years.

    OI (and/or POTS) can be part of this collateral damage through one dysregulated system impacting another, and another....! Some of the ME doctors and researchers do have good theories about how this can happen. It has been explained to me by my doctor but it is complex, I only understood part of it, and have forgotten most of it!

    So I can just say that treating ME has, for me and some others here, reduced OI greatly.

    Sushi
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