Might you have hypermobility syndrome rather than fibromyalgia?

I've read that a few of you have both fibromyalgia & hypermobility syndrome. Some have fibro, IBS, and specific non-muscular pain. I'm wondering if any of you have been mid-diagnosed with fibro, & you actually have HMS. Google the Brighton score & the beighton score to see if your symptoms fit. I was misdiagnosed with fibro but I researched my symptoms as they didn't fit properly with fibro. I was then sent to a London hospital clinc and was diagnosed with HMS. Consultant said lots of people get misdiagnosed with fibro first.

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  • For me the answer is no - I have both and was diagnosed with both at the same time. My hips are uber flexible which causes me problems as times, but its a different pain to the fibro pain - which also causes hip pains at times.

  • Yes, I agree, the pain is very different. I have arthritis in my hips and that pain is totally different from fibro pain.

  • I've been diagnosed with both and am fairly sure I have both - I used to be double jointed as a child and even slept with my feet tucked under my bottom (!) and now I have definite pain at the fibro points.

  • I have pain at almost all the points too, & was diagnosed with fibro. But I don't get the fibro fog. Pain at the points can be due to overworking muscles because of HMS. I don't think I have fibro as I don't have muscle pain, just (!) joints.

  • Hi,

    I have both. MY GP told me that it was a double whammy! :-)

    Hugs

    Jillyxx

  • Same here :) xx

  • My understanding is that they often run hand in hand, so it may just be that your HMS consultant isn't a Fibro believer......just a thought :o

    Foggy x

  • No I think I was misdiagnosed. I don't have muscle pain or fibro fog.

    (Apart from pain round specific joints from time to time). I feel 'lucky' now. It's bad enough just having HMS. You poor people who have both.

  • Actually, you can have brain fog with HMS. My GP told me that Fibro and HMS often run hand in hand. GP recommended a really good book about HMS which I have read, most helpful. Not sure if the rules allow me to put the author and title here/

    Hugs

    Jillyxx

  • Hi rowantree

    Thank you so much for that, I have just had a really good interesting read but it does not match my symptoms, so I would have to say no! However, it was an interesting read.

    All my hopes and dreams for you

    Ken

  • Hi and thank you for this link. I haven't come across this before but having looked at it I would seem to fit almost all the criteria. When I was diagnosed with fibro the rheumatologist did ask all the hyper flexibility questions and nodded sagely when I answered yes and seemed to infer there was a link with hyper-flexibility, fibro and IBS but said no more. So I was wondering, is there an impact on treatment? Does the diagnosis make a difference to what happens next? Since I get no treatment for IBS or fibro would this be something else to not get treatment for? Sorry, cynical Sunday.

  • Some people have specific meds for fibro. For HMS physio can be very helpful, as can splints, swimming, and learning not to hyperextend specific joints. I've just started Alexander technique with the pain clinic which is meant to help with proprioceptive awareness. There is a specific self management type course at UCHL (london hosp) offered when diagnosed, and in some other parts of the country, but it's expensive travelling so I haven't done it. Check out the hypermobility syndrome forum for lots of advice on specific issues. It helps to know what you're coping with, as HMS and fibro do have quite a lot of different issues- specific pain in specific joints, rather than muscular pain etc. IBS seems to be a symptom of both, as is fatigue. I think pain meds are more likely to work for fibro, although some HMS people have found meds that do work.

  • I have Ehlers Danlos Hypermobility (or HMS), Fibro and Osteo-Arthritis and all the delights that go with them. I have found that what may work for the Fibro, may cause problems with the EDH or vice versa. I think it's trial and error unfortunately until something works for you. Hope you can get it sorted, Linda x

  • Could be, very interesting but I have more signs of fibro.

  • I was diagnosed with Fibro 10 yrs ago, also ME/CFS 25 years ago! I was diagnosed with Hyper mobility @ London hospital a few years ago, so I have both! My son was Diagnosed with EDS & firbo years before me & EDS is hereditary!

    I just thought I was double-jointed as a child but I know the difference in the Pain between the two, none of which are easy to live with!

    I am pleased for you that you don"t have Fibro!

    (((Gentle Hugs))) X

  • Hi, I have both too. The joint pain from the hypermobility is a very different pain than the Fibro pain I get. I have specific joints that are affected most by hypermobility (my hips are crazy), and the pain is dealthy from partial dislocations and labral tears, and nerves pinching and catching etc, whereas my neck/shoulders/knees/back/chest are like a sore achey pain, where the muscles feel bruised to the touch, so even wearing a bra, or the dog putting a paw on me can make me hit the roof. And boy do I get fog!!! When the the hypermobility pain is at it's worse I am still able to move and exercise within Physio limits despite the pain, but when the Fibros bad, I can't walk from my bed to the toilet without support. having the two together is a nuisance because daily exercise is great for hypermobility, but rest is essential where needed for Fibro!

  • Thank you, this is very interesting. I have recently been to see an osteopath who says I am hypermobile. I do have a lot of pain specifically around the joints so I am beginning to wonder now! I will look into it a bit more, thanks for raising this.

  • Hi Rowantree :)

    Congratulations :) I think it is brilliant news that you have had your diagnosis overturned and I am sure that there will be others who have experienced mis-diagnosis. I would like to say though that people with HMS have a high susceptibility to developing Fibromyalgia because of the nature of how our ligaments, tendons and muscles get damaged over the years through overextending our joints.

    I have read a few times before about mis-diagnosis of Fibro and it being HMS. Personally speaking I would expect there to be cases of misdiagnosis as fibromyalgia's symptoms immitate those of many other illnesses too not just HMS.

    I like many others, also, have both, I was diagnosed with both at the same time by the same Rheumatologist and my HMS is genetic so I've had it since birth and my fibro the last 15yrs for definite...... so I was born double-jointed and have hyper-extended every joint pretty much, enough for it to be classed severe. I never made the connection that hypermobility and double-jointed were the same thing until a few years before I was diagnosed last year after 20yrs of chronic pain and anxiety etc. my knees don't need much of a movement to slide in and out of socket these days :o

    When I got my diagnosis and the consultant was explaining to me about how my IBS, and bowel issues etc were because of my HMS everything started to make sense. For the first time in 20years I could start to work out what was Fibro and what was HMS as I knew there was something else not just my double-jointedness.

    I have been receiving treatment for Chronic Pain for many, many years and I have had to adapt many things in order to be careful, long before my diagnosis and it has all been trial and error with medications and therapies.

    For instance I find that the hydrotherapy helps my muskoskeletal pain from the fibro but aggravates my HMS and my knees and hips slide more but exercising outside of water could cause me damage so working towards being fitter for example, or losing weight become harder and harder to achieve. It is essential to try and keep fit for both conditions but they both argue too much for me to be able to make any progress!

    :( It's often a catch22 situation with treatments.

    For me, personally, as separate illnesses Fibro and HMS therefore require completely opposing treatment methods so it is very difficult to move forward with things like stamina rebuilding and strength for example. The pain from the therapy to treat those kinds of things leaves me flat on on my back for about a week and barely recovered in order to go to the next session :o

    I receive specialist treatment for both illnesses as I was referred by the rheumatologist that diagnosed them both at the same time :) My hydrotherapist has to carefully assess me so that she can work out my schedule so that it treats both but without causing me illness or damage. She is a very skilled lady and I'm lucky to have her treating me :)

    Like Jillylin I was told by my pain consultant that I was unlucky and it was something he himself had rarely come across and he wasn't a young consultant!! I had been blown a double whammy.

    I can honestly say that we will all experience different things as we are all different.

    Please remember that I am not a medical professional and what I have written above is my own personal experience with HMS and Fibro. It is good to hear when someone has been freed from Fibro and I hope you remain free of it too :)

    I wish you all the best Rowantree :)

    Fluffies and smiles for you :)

    :) xxxsianxxx :)

  • Thanks all, for your views & sharing your experiences. It seems there are quite a few people with both, making exercising even harder. It's totally trial and error I've found. I stopped cycling as it hurt to much, but found my knees got worse, so I've started again and they're much better! But it makes my ankles hurt a lot! It's a constant balancing act. Similar situation with using, or not using, one or two crutches- if I don't use them I move less, if I do I damage my shoulders!

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