Hypermobility Syndrome?

Hypermobility Syndrome?

I have asked for a referral to a rheumatologist as I am able to bend myself into very strange positions. Although this has always been the case for me, my Endo did not refer me to a rheumy as she does not do so on a consultant-to-consultant basis. So I will have to go through my GP to get this done.

I have included a picture of me bending into such a pose. I shouldn't be doing things like this at 28 LOL! Boyfriend calls them party tricks!

Osteopath I saw several years ago said I had hypermobility of the spine and joint laxity/excessive torsion of the pelvis.

So I hope I get something done about this soon.

I am now no longer worrying about the hypothyroidism/Hashi's - I would like these other issues looked at, is all and just to say to people out there that there is something else going on - I'm sure about it. I have also looked into acquiring more information and am reading up about other things in relation to what is going on with me.

Jo xxx

31 Replies

  • you might find this site interesting


  • Thanks for the link. I have already looked at it and have had it bookmarked.

    Jo xxx

  • I can do that and I'm 58!! My elbows easily bend the wrong way, it's just how it is.

  • If you have always been able to do it I think you will find that it is just how you are

  • I would be concerned if you couldn't do that at 28 :-p

  • Jo, I think you are getting overanxious,I see nothing wrong in your mobility or body shape. The osteopath uses words which can mean nothing in regard to you and your body. Perhaps he thought he could make some money out of it. At 28 I had two children and was just as supple as you.

  • Unless the picture is deceiving it looks a normal position for a 28year old to be able to perform,as penny rose says it would be concerning if you couldn't do that at your age!


  • As with hyperhen, I'm 50+ and hypo and hyprtmobile.My classic party trick is putting the palms of my hwpands flat on the floor with knees straight! I could still do this even when I was 9 months pregnant. Hyper mobility syndrome is well wo rth researching because the other symptoms, while not so obvious, will probably ring lots of bells and help to reassure you.

  • Hi mumcat, thanks for your reply.

    I can't even put the palms of my hands flat on the floor with knees straight - it hurts my legs!!

    Jo xxx

  • Hi Jo, I've never thought of myself as hypermobile, but I'm 65 and can do that too with ease. Looks like good flexibility to me - keep doing it as it can only be good for you. Jane x

  • Hi Jane, thanks for your reply.

    I do work out in my spare time - with Zumba and dance work outs. I could go for months without doing anything active and I still bend myself into strange positions. :)

    Jo xxx

  • Getting the balance of exercise and rest right is very difficult. My daughter has found that the cruelest of all the things that she has been forced to give up is her running. She used to be a county level 400 metre runner, take part in triathlons, and loved all kinds of exercise - she surfed, rode horses, swam, did ballet and tap and thought nothing of it. There weren't enough hours in the day for her! Giving all that up has really hurt. Sometimes now she will force herself to do a 20 minute run on the treadmill, but boy does she suffer afterwards! It's the sheer frustration of it all that makes her do it. She has managed to teach herself yoga and pilates and they are much kinder. She went on a pilates teaching course when she was working as a physio, and it is important to make sure it is done correctly. I think someone suggested a yoga course to you the other day. Why not try yoga and/or pilates and once you have learnt the techiniques correctly you can do both at home. There are lots of DVD's on both of them to help. Don't worry about your hypermobilty, just try something gentle to keep you supple. Both yoga and pilates have so many benefits for mind and body. Jane x

  • Hi Jane, thanks for your reply.

    I am so sorry to hear about your daughter. It is hard especially when someone has to give up doing something they love. I have found my hypermobility a mixed blessing really as I dance in my spare time and can move really well. Not that people who aren't as supple do not move as well as me as I'm sure they do! :)

    Yes, I'll look at yoga when I next go back to the health centre on Tuesday. I think I've said before that they do arrange for this, but I'm not a hundred per cent sure. If not I'll get a DVD - maybe even look at YouTube tutorials if they're around. Thanks for your help.

    Jo xxx

  • Interestingly (I did not know this until recently) it is known that there are links between ME/CFS and hypermobility and orthostatic intolerance. Just thought you might want to know this Karisma and bear it in mind in your investigations. There are references if you google - even mentioned on Wikipedia on their Hypermobility entry.

    I know that some people on here believe that ME/CFS as such does not exist, but I had a diagnosis of hypothyroidism first before the ME/CFS one, and I do think that there are some distinct differences.

    I am also hypermobile (not to a severe extent though), and have OI (mild). Can't say I blame you wanting to have it diagnosed, but I have never bothered as far as the hypermobile side is concerned, as there's too much else going on, and what are they going to do about it? It could even explain my severe food intolerance issues. I have had gut issues all my life (now 61).

    Could be useful for ESA purposes though if you are too sick to work which I think you are at the moment? I have a friend with ME/CFS diagnosis (over some years) and she recently went to the leading person in UK in London privately,and got an EDS diagnosis which had never been picked up by NHS. That's the problem though..... to find the right person non-privately.

  • Hi, thanks for your reply.

    Yes, I was diagnosed with hypermobility in 2005 and hypothyroid in 2013.

    I have applied for ESA but have not heard from the DWP about this.

    Jo xxx

  • Hypermobility is very common and not a problem unless there is pain associated with it. It is unusual to be referred to a rheumatologist unless there is also joint pain. I see many children (I am a physio) with hypermobility and my advice is to avoid over stretching joints and strengthen muscles around them. Swimming and other non weight bearing exercises are good. There are no treatments for hypermobility except exercise and painkillers.


    This is the measure of hypermobility.


  • Hi Roslin, thanks for the link. I will look at this.

    Jo xxx

  • Roslin's advice is absolutely correct. I suffer from hypermobilty syndrome. My joints sublax and cause immense pain. I am now suffering from muscle weakness. No treatment other than rest, strengthening exercise and painkillers. Many athletes, dancers are hypermobile. It isn't a problem unless you get pain with it. Best of luck x

  • Hi behappy1, thanks for your reply.

    I have never been an athlete or a dancer - which makes it even odder.

    Jo xxx

  • Hi Karima, neither am I. It's actually very common and to some it's an advantage. It's only an issue when it begins to cause pain. Otherwise nothing to worry about. Usually a parent has it too - they often don't realise. I recently noticed that my mother is hypermobile. She's 70 and I hadn't noticed before now because she has severe osteoarthritis and in a wheelchair. I noticed it in her ankles and wrists. Try not to worry unless you get pain. But in the meantime get physio. Unfortunately I suffer from other health problems and my mobility has deteriorated. Use it or lose it is very true :-( x

  • Hi Jo - Glad to see that you are requesting this referral. At least you will then know for sure if you have the condition and can then learn how to manage it.

    It's worthwhile checking the associated conditions before your appointment so that if you do get the diagnosis you can see if you have any of these as well - Maddie

  • I can also easily do that (I'm 41 and rather overweight!) . That is very good flexibility. It doesn't mean you don't have hypermobile joints though so do get checked out if it's causing you concern or pain.

    My hypermobile joints cause me pain and various joints move incorrectly. The subluxation of the joints can cause a lot of pain. My shoulders, hips and pelvis cause me the most problems. I can be punching the air at karate training and my shoulders will 'come out'. I know I have a fast, powerful punch but that shouldn't happen! I can't get anyone to refer me though :(

    It's worth getting it checked out if you can get a referral :)

    Carolyn x

  • Hi Carolyn, you need to see a physio. Rheumatology aren't that interested in hypermobillity syndrome unless it is a variant of elhers danlos syndrome. That's because unlike other rheumatic conditions which can be autoimmune, it's basically a weakness in collagen. No treatment other than painkillers and physio. Physio is key! X

  • Thanks. I have tried to get a physio referral but was just told to take ibuprofen! Ehlers Danlos has been mentioned on here before. I must refresh my memory as I can't remember anything about it!

  • That is awful. Do try to push for it. Hypermobilty can lead to early osteoarthritis. It can reduce quality of life and progressively get worse if your muscles aren't strong. My back hips and neck now sublax which I find really painful. It just used to be mainly shoulders, knees and ankles. I wish I'd started physio sooner. The consultant I saw in London at the hypermobilty unit said that many GPs and rheumatologists aren't that familiar with hypermobillity syndrome as it is relatively new (15 years or so) in terms of it being classed as a syndrome.

  • I will try again. I am fairly strong but of course it needs to be the right exercises. I saw a sports therapist who have me some specific exercises but I know that's not enough and she said so too. I have to be more assertive!

  • Just to say, make sure the physio is knowledgeable about joint hypermobility though as some types of physio can make the problem worse.

  • Karisma, I think that hypermobility is only a problem if you get frequent sprains, dislocations or daily pain. I really won't worry too much otherwise. You are probably just supple!

  • Hi Lilliput, thanks for your comment.

    I do sprain my ankles very easily when dancing. That's about it.

    Jo xxx

  • Hi Jo,

    I have joint hypermobility syndrome, just being hypermobile in itself is not necessarily a problem and didn't cause me any problems until aI was 32 and had a car accident.. unless you have severe joint pain andmobility problems as a result it is nothing to worry about.

  • Hi Scatterbrain, thanks for your reply.

    That's good to know. :) I have no severe joint pain (apart from before I had my hip tendon repaired). I have problems using my legs at the moment but I'm putting that down to the Hashi's.

    Jo xxx

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