Hypermobility Syndrome with Fibromyalgia. Where do I start?

So, I had that all important appointment with the new rheumy yesterday to talk about the catalogue of symptoms that have been stacking up over the last 18 months, culminating in me giving up work. RA was ruled out, but Lupus wasn't because it turned out the good old NHS who insisted I didn't need this referral, hadn't ordered the right tests for Lupus screening. So although still awaiting those results, what she did diagnose, in addition to Fibromyalgia, was hypermobility syndrome. She said I was in a mess, and since it had taken me a long time to get me into the mess, it would take even longer to get me out of it.

I have to make exercise my life, and even if I do nothing else with my day, I have to swim, cycle, Pilates or row. Where do I even start??? I can't walk down the stairs at the moment? Help! Xx

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  • Gentle hugs. I have HMS and Fibro as my mix. I used to be a ballet dancer though I was born with HMS not trained into it. Both HMS and Fibro share a lot of the same problems. Exercise is necessary unfortunately to support the joints. I had to give up work because I just couldn't take it any more.

    I would start with just one thing, and one thing only. Maybe sit in a chair and lift one leg up until it is straight then lower it Do it with the other leg. Then stop!!! Maybe later in the day repeat it then stop. It will take time and it has to be done slowly. I swim but like you stairs are my downfall.

    Gentle hugs

    Jillyxx

  • OMG hunny Ditto ditto ditto :O :o :O

    What can I say!?!

    I waited 7yrs for physio type treatment because they didn't know what they were treating and didn't want to cause me any excess damage. I too was diagnosed at the same time by my Rheumy (in march last year) as having HMS and FMS and I'm also in a mess. I use a wheelchair when going out now as I cannot be on my feet for long, I'm ok around the house as there walls and appropriately placed sticks and crutches dotted about. I have no stability in my back, hips, knees/legs according to my therapist and it will take hydrotherapy to get me into ground physio as they call it (out of water). I have distinct muscle wastage in my legs I can see it now it looks ugly and foreign to me because I've always been active.

    Lupus is an ongoing issue at the moment for me and I've just been referred to dermatology so hopefully one way or the other I'll find out :) Thankfully.

    We have an uphill challenge I know but if we keep positive and believe we can do it then we shall see some progress. I won't write myself off yet until I fail my aim to be able to get to my local shop and back without using the chair. I have got used to the idea now that I'll never be the same again. The dislocations are problematic for me and my knees regularly do it. I need the physio and exercise to help prevent that from happening but if we do too much we suffer, if we do to little we suffer so where is our balancing point of exercise?.................... it will take some time to establish baselines that we can use to gauge our pacing and that's where the Fibromyalgia comes in to play.

    The Hydrotherapy knocks my joints for six and I end up in agony for 4-5 days afterwards and also been making my knees dislocate more frequently. End up fatigued and high as a kite on pain meds, which don't even kill the pain. How on earth can I work with that?......... and then I go back do the same again and the same happens. I only ever see a slight improvement in my balance that's all. Allegedly it's the best and only real way to help us get the stability back that we need.

    Remember I speak personally but with real empathy for your situation as I am also experiencing this at this present time. I wish you wellness hunny and send many healing, warming fluffies to you

    :) xxxsianxxx :) we have to stay positive ;)

  • Hi Lipbalmaddict it is so easy for them to say exercise and have to. So this is where we need to gently manage our conditions and PACE PACE PACE, It does work but not in a hurry So Slowly slowly and we will get there :D Take care xgins

  • Thanks girls, sorry you all suffer from the wildly swinging joints too :( ! I used to be so proud of my ability to sit with both feet behind my head, I never realised it would cause me so much grief one day. The thing that confuses me, is that she said 'exercise' like she was talking to a couch potato who'd never had a whiff of the stuff, yet 4 years ago I was running 5K (in some discomfort, but doing it), going to the gym 5 times a week, mucking out my horses stable twice a day, and riding my horse daily, sometimes twice a day, and working a full time job, most of it spent on my feet. So, I was incredibly active when FMS took hold and slowly I picked up more and more injuries, had falls, broke bones, tore tendons, ripped cartlige and ended up unable to do any of it any more. So, why will it be different now? And surely Atos will expect me to be working if I'm well enough to do Pilates or go for a swim? The Dr made me feel like it was my own laziness and stupidity that had got me into this state...xxx

  • Right there with you hunny its been a long fight for me too :)

    I wasn't being lazy either I went from working crazy hours to none in a matter of 2-3 years it was kinda rapid. My work was always physical so I was always fit. Had I known when I was younger that all the sport etc would cause me this I too would have cut back.

    But hopefully given time will get enough stability back to do little things :)

    xxx

  • Hello Lipbalmaddict,

    I personally do not have HMS but have people in the Andover group that do and Arthritis Research UK seem to have very good information about it. Please see the link;

    arthritisresearchuk.org/art...

    Hope this helps

    Emma :)

    FibroAction Administrator

  • Hi Deffo not lazziness or stupidity. that got you into that position so do not take it personally xxgins.

  • Well said gins xxx

  • If you are listening up there Mr God

    Please please could you spread a bit of sensitivity

    Amongst us all

    But especially all medical persons

    Who can deflate and depress us

    With their comments

    Amen

    Ps I would like a pound for every unfeeling comment that has been thrown unthinking in our direction pushing us perilously close to the pit that we are all cling on with our finger nails to keep out of.

    And please forgive my humour but your comment about Atos and fitness to work conjured up a splendid cartoon in my imagination.

    Weave gins comments into your being wise words.

    You have started already by finding this site.

  • Haha, thanks Nedd and of course gins!

    I suppose if Atos could find me a job that involves only a 20 minute day of walking in water then that cartoon wouldn't be so far fetched. The funny thing about all of this is that I was employed, until 3 weeks ago by the Secretary of State and it was Atos who suggested I was no longer fit to be at work and ought to be terminated on capability grounds or be considered for ill health retirement at 36. What's the betting their attitude will shift some when it comes to my benefits claim...!

    Xx

  • Oh gawd the irony.

    on a serious note you though must be experiencing grief.

    Cut yourself plenty of slack,

  • Get the book 3 Minutes to a Pain Free life by Joseph Weisberg. It's absolutely brilliant for 6 stretches, 30 seconds each stretch, every day. And it works xx

  • Hi Lipbalmaddict

    I am so sorry to read of your current plight with the NHS and how it has left you feeling. I do not know what to say. I think everyone on the forum would say 'you pace yourself'. I was wondering what your GP was like? Is there any chance that you can go back to see him and explain that this is asking for the impossible? How would he respond to this? Maybe he could refer you somewhere else?

    Another thought I had was to undergo one exercise and take yourself to A&E writhing in agony and then they may just see that they are being somewhat silly? Something did come into my mind, are you on benefits? If so, and you can do all of this then your benefits could be stopped?

    I sincerely hope that you can find some resolution to this or that somebody else on the forum can give you some ideas?

    All my hopes and dreams for you

    Ken x

  • Hi Jeanee 2,I tried to use your link but it had been removed. Are you on Facebook? Could I add you as a friend?

  • Try swimming, as I have been told to try that as the water supports you. Once your comfortable doing that then you could try something different. :) xx

  • hi lipbaladdict your rheumy doesn't sound very good if you were able to do all this exercise then you wouldn't have any problems mine said you need to stretch the muscles so must walk even though in pain before you start& hydrotherapy is good do gentle exercise in warm water do try it.x

  • Hi lipbalmaddict

    My daughter was diagnosed with HP back in the summer. Her Rheumatologist told her to be more active and the pain would stop. She got a volunteer job working with children with special needs in a summer holiday club. It involved running around after them, day trips out, and even piggie backs! She loved the job but had to give up after a week and a half due to excruciating pain everywhere. When we told him what had happened, he changed his diagnosis to Fibro and told her to pace herself :/ I agree with Jilly, start very slowly and rest in between. You would definitely benefit from some physio input though, that way you will know what exercises will help. Pilates can be good too, and you can get DVD's to help you with that. Only do the gentle ones at the start though. :)

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