May have been misdiagnosed

My sister has just been diagnosed with EDS type 3, she told my mum and my mum looked it up on google, she immediately thought of me. About ten years ago I was diagnosed with fibromyalgia, chronic fatigue syndrome and hypermobility, IBS, vertigo and many other problems. I went to the doctor and she is sending me to see a rheumatologist and have an ECG but I get the feeling she is just doing this as a formality because she said just as I was leaving this would explain a lot. What do you think, I am thinking that she thinks I have EDS type3 or am I reading it wrong. My mum is also being sent to see a rheumatologist. My 9yr old daughter was diagnosed with hypermobility when she was 4yrs old, I'm worried I have passed it on to her is it possible.

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  • I think it is genetic, I have been diagnosed with hypermobility syndrome as well as my two daughters and 3 grand daughters, my grandson hasn't. We all have problems in different ways. We were all diagnosed after my first grand daughter had a collapsed lung with no explanation and slowly all our illnesses began to fall into place. I'm in my 60s now. When I spoke to my mother about it we think she and my grandmother probably had similar difficulties. As I and my daughters are getting older we are finding we are beginning to have other problems developing with auto immune diseases and again it's all connected to the genes. We all see the same consultant and specialist nurse, it has been a big eye opener as to how it all gets connected. My sister has MS and even this is something that is listed within the connections, which never crossed my mind until I began to look deeper at how the system of our genes, bloods and bodies work.

    You say your daughter is diagnosed with hypermobility, so there is a possibility that she has BUT she may not have it in the same way that your sister or you have it.

  • Hi,

    Yes, from your list of diagnoses, it seems likely you have been misdiagnosed, although doctors tend to leave the other diagnoses sort of hanging there and just add EDS to it. It appears to be one of the most commonly misdiagnosed conditions, because doctors don't know that the condition is not rare (they are still taught it is rare in medical schools), and is system-wide, causing random things such as chronic pain, fatigue, and so on, with no apparent cause or connection. It is also linked to OCD and stress/panic disorders. Happily, not everybody gets every thing! Doctors seem hung up on the dislocations aspect too, but some of us only sublux (partly dislocate) and I didn't realise that's what was happening - I just thought I was pulling muscles.

    As it runs in families, it is very likely you got it from your mother. There is a very strong chance your daughter has inherited it from you.

    However, my mother must have given it to me and all she has are very flexible fingers - no pain, no other symptoms at all, so different people seem to experience it to different degrees. She is a tiny fit woman with petite joints, so perhaps that has helped her.

    Also, my brother must be carrying the gene (his child has it), but he shows no symptoms whatsoever, not even bendiness. It seems to mainly affect women.

    It is good to get a proper diagnosis - the earlier you get a diagnosis the better your outlook can be in terms of being aware before you get or do any damage, which is great news for your daughter. If she maintains a normal weight and maintains good muscle tone, for example, she may be able to avoid some of the worst effects by the time she reaches middle age, or before she decides to go bungee jumping for a career...

    Have a look at all the possible symptoms and become your own expert as you will rarely find a doctor who knows much about it.

    Just for info, these are what I have: chronic pain everywhere from aching to sharp stabbing pains, ice-pick headaches, fatigue, TMJ, subluxing joints, gut problems, tingling in fingers/toes, dismenorrhea, irregular heart beat, osteoarthritis in base of spine and fingers, weird skin - stretch marks and odd scarring. Sometimes I get plantar fasciitis. I am mildly doubly incontinent and have prolapsed something. I do not react to local anaesthetics or epidurals. I have psoriasis but don't know if that is just bad luck. Some of these are common and happen to middle aged women everywhere, but I have been getting worse since age 22.

    At a massively unfit age 49, I still score 9/9 on the bendiness test.

  • EDS 111 and hypermobility are considered to be the same thing by some doctors and can also be known as hypermobility syndrome. I think it's important to pin down a definitive diagnosis but treatment is pretty much the same. The other symptoms you describe I have heard of as being part of the syndrome so I wouldn't say you have been misdiagnosed, just that you haven't got to the bottom of it yet.

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  • Thank you all for replying, your replies have been very useful, I will do some more research and keep you posted once I see the rheumatologist.

  • I have EDS 3 and so do my kids .Found out after their diagnosis my mom's side of family have it so yes it can be passed down.You can have fibromyalgia as well as EDS as it states in EDS UK handbook.

    There is a big debate as to whether hypermobility and EDS 3 are the same but it can make a big difference.A large proportion of the population have hypermobile joints which have no other problems.EDS 3 can affect every where there is collagen so apart from being bendy it can affect skin,eyes,gastric issues etc.So with Eds diagnosis there should be more notice taken especially with kids as they grow.It affects us all similarly but different ways.One son has sublaxing hips and ankles the other has it worse in knees and elbow and eldest son has scoliosis.One has a chiari 1 malformation and daughter had a parial retinal detatchment.We alll struggle with dysmotility and fatigue ,obtain very little relief from local anaesthetics and have very poor slow healing so all in all I don't see hypermobility and EDS 3 as the same thing.

    If you aren't a member of Ehlers - Danlos Support UK I suggest for the few pounds membership that you join.The handbook is a good start read and the Fragile links mags also,mine arrives just when I need an its ok you aren't on your own lift, full of info and life stories etc.

    Best wishes to you

  • Thank you so much littleeffie, I will join the ehlers danlossupport uk as soon as possible.

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