Do you ever wonder whether you have been misdiagnosed or have another illness running alongside EDS?

Hi all, just wondering whether any of you ever wonder whether you've been misdiagnosed or may have another illness running alongside your EDS. I ask as I have been diagnosed with Hypermobility Syndrome/EDS Hypermobility type (depending upon which Dr you speak to) but at the same time other women in my family have had similar symptoms go on to be diagnosed as something else - my mum has been diagnosed with Lupus, my nan has been diagnosed with rheumatoid arthritis, my aunt has been diagnosed with MS, my sister has been diagnosed with Tachia Jaw (sorry don't know spelling) & my niece has bronchomalasia all which seem to have nigh identical symptoms in many ways yet one or two differences to set them apart.

As such my mum is now urging my sister & I to revisit the rheumatologist for further tests & diagnosing & whilst part of me wants to shrug it of with a laugh another part of me is intrigued by just how similar many of these auto-immune diseases are & wonders 'could she be right?' I have dry skin/eyes which could point to Sjogrens...I have all the symptoms for Raynauds...I have some of the traits of Marfans....Am I just torturing myself unnecessarily by considering further tests?

8 Replies

  • In answer to your question yes. I have been diagnosed with many other things along with hypermobility syndrome/EDSH. I also have restless leg syndrome, migraines, endometriosis possible adenomyosis, gastric reflux and depression. EDSH can have many complications and the book I recently read explained it so fully that I now understand how awful this syndrome can be. It's called "a guide to living with hypermobility syndrome - bending without breaking" by Isobel Knight. There are 7 pages in there of all the complications/other conditions associated with EDSH. Most drs don't even know what HMS is which is where we find the problems. I would suggest that you get this book and get your whole family to read it. HMS/EDSH is genetic so your family probably all have it too but have different combinations of symptoms. I would read the book before getting another referal as I've found out so much more from the book than I ever have from any medical professional. xxx

  • Thank you missteal, I know what you mean by saying you learn more from books than from the specialists. I have only ever dealt with 3 professionals who had any idea of the condition - my former GP (sadly now retired, sorely missed), my physiotherapist & an occupational therapist through work.

    Yes every female within the family seems to be getting diagnosed with hypermobility, my youngest daughter has just today scored full marks on the scale. It is proving a fun learning curve for all of us that we effectively have the same condition yet it effects us all slightly differently. So many things I took for granted as a child I'm suddenly realising I shouldn't actually be able to do (zipping up my own dress, applying my own suncream to my back, lifting my feet to my hands to put on socks/shoes without sitting) & I'm constantly having to watch how I sit (not sitting in a 'w') so that the children don't copy me.

  • hello,yes definately,but then I think no as it is a multi system disorder,just dont agree with benign,certainly doesnt feel like it,but I suppose for medical point of view it is,but it does affect one thing badly one day,then its okayish,drives me to distraction.I dont know why I keep feeling I must be doing something wrong. feel tired,one rheumatologist put it nicely said it is the way you are made,if we could send you to a factory in the sky and get you fixed we would,then he discharged me with a pamphlet.

  • Exactly what happened to me "you have HMS heres a leaflet" same when i got an autism diagnosis and no leaflets on my CPTSD diagnosis.

  • Have you had full blood tests run to rule out Rheumatoid arthritis, Lupus , throid diabetes

    etc. Just because you are EDS?HMS doesnt mean u cant have another dx as well.

  • I also have autoimmune problems; hypothyroidism and low B12 and have to have B12 shots, I also get eczema and IBS which might be due autoimmune issues. Plus a list of other things that often go along with EDS.

  • Yes: my life has been misdiagnosis after misdiagnosis. Finally at 60, I'm relatively thoroughly diagnosed and on several fairly effective treatment plans. But my conditions have mostly progressed without systemic treatment, which means my health has deteriorated at a faster rate than it might have, had my diagnoses & treatments been more prompt and appropriate. But I'm not complaining, cause now I feel younger and better than I did in my late 20s...

    I have infant onset systemic lupus as my primary, with raynauds, erythromelalgia, lichen sclerosis, sjogrens and vascular problems which indicate vasculitis evolving. I also have infant onset heart murmur, paroxysmal haematomas and angina bullosa haemorrhagica, totally unexplained herniating piles in my 20s so severe they required full-on haemorrhoidectomy, also mortons neuromas, equinus contractus claw toes....and on and chondrosarcoma in my finger joint which went malignant over 14 years of growing while drs thought it was just arthritis.....I'm relatively tall and have always been slender

    My father endured coronary disease from his early 40s & died of an abdominal aortic aneurism. He was classic marfanoid type as was my maternal grandfather. I have been considered joint hypermobility syndrome overlapping with ehlers danlos. But I wonder about a pinch of Marfan too. i was exposed to the artificial oestrogen DES for at least 5 months in utero and have typical internal reproductive organ defects, plus have been unable to conceive. My drs think my health issues are probably down to DES as much as to genetics.

  • i also have raynauds symptoms confirmed about 15 years ago, lupus can run in families with raynaurds and fibromyalgia. i got a carpel tunnel and vitamin D deficiency diagnoses shortly after my EDS one.

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