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Chronic fatigue in Ehlers-Danlos syndrome-hypermobile type

Discussion in 'Latest ME/CFS Research' started by hixxy, Feb 12, 2017.

  1. hixxy

    hixxy Senior Member

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    Chronic fatigue in Ehlers-Danlos syndrome-hypermobile type.
    Hakim A, De Wandele I, O'Callaghan C, Pocinki A, Rowe P

    Abstract
    Chronic fatigue is an important contributor to impaired health-related quality of life in Ehlers-Danlos syndrome. There is overlap in the symptoms and findings of EDS and chronic fatigue syndrome. A proportion of those with CFS likely have EDS that has not been identified. The evaluation of chronic fatigue in EDS needs to include a careful clinical examination and laboratory testing to exclude common causes of fatigue including anemia, hypothyroidisim, and chronic infection, as well as dysfunction of major physiological or organ systems. Other problems that commonly contribute to fatigue in EDS include sleep disorders, chronic pain, deconditioning, cardiovascular autonomic dysfunction, bowel and bladder dysfunction, psychological issues, and nutritional deficiencies. While there is no specific pharmacological treatment for fatigue, many medications are effective for specific symptoms (such as headache, menstrual dysfunction, or myalgia) and for co-morbid conditions that result in fatigue, including orthostatic intolerance and insomnia. Comprehensive treatment of fatigue needs to also evaluate for biomechanical problems that are common in EDS, and usually involves skilled physical therapy and attention to methods to prevent deconditioning. In addition to managing specific symptoms, treatment of fatigue in EDS also needs to focus on maintaining function and providing social, physical, and nutritional support, as well as providing on-going medical evaluation of new problems and review of new evidence about proposed treatments. © 2017 Wiley Periodicals, Inc.

    © 2017 Wiley Periodicals, Inc.

    KEYWORDS:
    Ehlers Danlos; fatigue; hypermobility

    http://www.ncbi.nlm.nih.gov/pubmed/28186393
    http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31542/abstract
     
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  2. perrier

    perrier Senior Member

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    Is there PEM in eds
     
  3. wastwater

    wastwater Senior Member

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    By investigating EDS could it not shed light on the mechanisms of ME
     
  4. mfairma

    mfairma Senior Member

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    No.
     
  5. RogerBlack

    RogerBlack Senior Member

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    It could. But so could investigating cancer fatigue, or MS, or post anasthesia cognitive dysfunction, or the molecular structural resonances of the ribosome.
     
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  6. wastwater

    wastwater Senior Member

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    That made me chuckle the molecular structural resonances of the ribosome
     
  7. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    That may be true, but I wouldn't dismiss this article. It seems likely that, given the overlap in symptoms, some people with EDS may be misdiagnosed as having ME, and also some people have both, so suffer particular patterns of symptoms. Better understanding of this could help quite a lot of us.
     
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  8. valentinelynx

    valentinelynx Senior Member

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    Well. It seems I have both ME/CFS and EDS (hyper mobile type most likely, though I have some classic features—I've not been officially diagnosed by an EDS expert but meet the criteria), and I have PEM. I think that people with EDS may be more prone to developing the condition we call ME/CFS, most likely as a reaction to an infection that our immune systems cannot effectively eradicate.
     
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  9. justy

    justy Senior Member

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    I meet a lot of people around with M.E, EDS H, and MCAS - the three go hand in hand for some of us lucky people. A large section of those with the classic three also have Lyme. My theory is that the connective tissue issue means its harder for people with EDS H to fight of lyme and their immune systems cant keep it in check, it goes undetected for ,many years, leading to M.E, this then further weakens the immune system. Both lyme aggravates mast cells, and mast cells like to hang out in connective tissue so hence MCAS develops.

    I wish someone would study us!
     
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  10. Valentijn

    Valentijn Activity Level: 3

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    In EDS there's likely to be a different type of exercise intolerance, which would hit during or immediately after exertion. It's unlikely they would get delayed PEM with immune, neurological, and/or muscular symptoms.
     
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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Hmmmm - that is my experience. Only in the initial weeks of ME did I experience delayed PEM. As the weeks wore on, the delay became less so it is now during or immediately after exertion. I am somewhat hypermobile (can put my thumb to wrist, but not touch floor leaning over with straight legs).

    But I do have neurological problems: heart, sleep, breathing, bowel, low body temp.

    A recent vascular ultrasound found symptoms in my right arm (I feel nauseous if I lift my arms above my head - but not sure if this is a muscle problem). I have yet to see the official report. Lifting things messes up my blood pressure and I have to be horizontal for 20 minutes to allow my body to 'stabilize'.

    Since I worsened almost 2 years ago, I've not had any colds / flu. But I am taking 3 HIV meds, perhaps they help stave off other virus too.

    I'm beginning to suspect I have EDS in addition to ME. Will mention to my doc next time.
     
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  12. Silence

    Silence

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    My twin and I got a clinical diagnosis of EDS type 3 or a connective tissue of unknown origin at Stanfords Marfran and aortic disorders clinc even though we don't show signs of being hypermobile or stretchy. We also had CFS/ME at the time of diagnosis. He wasn't surprised to hear about our symptoms related to CFS. The specialist said he often see EDS patients with this sort of presentation of CFS/ME symptoms and will often refer these patients to the autonomic clinic or to see Jose montoya. We wanted to get gene testing, but insurance didn't cover it at the time and I am not sure if there is one for type3. THere are so many other related connective tissure disorders, I just might get the Whole exome testing done- I've emailed GENOS and they said they do test for most if not a lot of the same ones listed on this website.

    I think Stanford uses this leb for genetic testing:
    http://uwcpdx.org/collagen-diagnostic-laboratory/all-cdl-tests/

    My twin and I met a lot of the minor criteria and some of the major ones. These are some of the signs we have. Do others with suspected EDS and CFS or related connective tissue disorders have these signs:

    CHest wall deformity
    Any abnormal finding on Echocardiogram
    Spontenous pnuemothorax
    Thin fragile skin
    dislocated lens
    long narrow face
    stretch marks
    crowded teeth


    There is a chart in the link of major and minor criteria for EDS:

    http://hypermobility.org/help-advice/hypermobility-syndromes/criteria-for-eds/

    The only thing we do is monitor our heart with yearly echos and watch for changes. Before getting CFS/ME I was exercising everyday, lifting weights, and running a few miles without any signs of PEM.... Now I am bedbound and can barely walk to the bathroom.
     
  13. aquariusgirl

    aquariusgirl Senior Member

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  14. aquariusgirl

    aquariusgirl Senior Member

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    Pretty sure I don't have EDs but do have a copper deficiency. Hmm.
     
  15. ryan31337

    ryan31337 Senior Member

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    Like you I am not classically hypermobile, I score 1/9 on the Beighton scale, though I do have a lot of flexibility in some other joints. EDS was not considered until being investigated properly for POTS, some 20 years into my CFS/ME journey. Naturally the POTS cardio was quick to point out some correlation in my history:

    -Crowded teeth (4x baby teeth needed removing)
    -Dental weakness with endless fillings, chipped teeth etc.
    -Reduced/delayed response to lidocaine for dental surgery
    -Significant TMJ problems
    -Stretch marks in odd places that weight change wouldn't explain
    -Joint pain and clicks
    -Mild esophagitis
    -IBS
    -Lower back pain

    And of course two big comorbidities, POTS & MCAS. Its been left that I likely have some form of hypermobility.

    Haven't pursued it further - keen to hear if any other confirmed EDS patients have any recommendations on diagnosis/treatment.
     
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  16. Silence

    Silence

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    I don't believe that there is an effective treatment for EDS, but only for the manifestations or symptoms of the disease. The specialist I saw did offer beta blockers, but after finding out I had low blood pressure he quickly dismissed that option. He said he often prescribes beta blockers even for people with normal blood pressure if he believed they had risk for anyursyms, which I might have according to my heart scan. For joint and back problems some people see a Physical therapist who has experience with patients with connective tissue disesase and sometimes they get to wear some sort of brace to prevent dislocations. For my IBS problems he could only suggest I see a gastroenterologist. I also have tmj problems and he suggested a mouth guard. I bought one on amazon, but it reeks of plastic everytime I wear it... so not wearing it anymore.

    The best way to get diagnosed is probably by a specialist dealing with these conditions, a genetic counselor or a rhuematologist perhaps.

    Its funny, ever since I was given the diagnosis of EDS and when I find myself needing to go to the Emergency room for some reason, I just have to mention that I have EDS and they almost always rush me in and want to check my heart. I had a lung collapse and they thought I was having a heart attack, which it did feel like, but luckily wasn't.
     
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  17. ryan31337

    ryan31337 Senior Member

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    Thanks @Silence, pretty much what I thought.

    I had a bite-raiser mouth guard made at the dentist from a mould of my teeth. Not sure what the material is but its quite flexible and doesn't smell or taste of anything - it made a big difference to my TMJ condition.

    Thankfully my heart checked out fine in an echocardiogram and I don't have issues with dislocations or constant pain so I guess I will count myself lucky and put it to one side for now :)
     
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  18. wastwater

    wastwater Senior Member

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    I may have an odd form of EDS in Riegers syndrome there is extra umbilical and sometimes extended bottom lip these maybe signs of a connective tissue disorder like EDS.
     
  19. anciendaze

    anciendaze Senior Member

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    Not all EDS is hypermobility type. Not all connective-tissue disorders are EDS. Most type III EDS lacks known genetic markers.

    I am in the 5% or so of the population which has some kind of connective tissue problem without qualifying as EDS. I have had two inguinal hernias. I have scoliosis and pectus excavitum. Other problems on the list do show up, but are debatable. I likely had a degree of hypermobility when young, and probably have problems with spinal stenosis at present.

    I know people with very different builds and genetic backgrounds who have connective-tissue disorders that are associated with a wide range of medical problems. This is a large gray area in current medicine.

    Can anyone point to organizations or institutions for connective-tissue disorders comparable to those dealing with disorders of heart, lung, liver, etc.? All the mentioned organs are affected.
     
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