hypermobility syndrome

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  • MoonyRose
    MoonyRose Posts: 52
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    Hello everyone, my name is Amber :). I've got BHMS too, I joined MyFitnessPal to try and help it. I'm bored of giving into the pain all the time and I want to exercise now. I'm double jointed in every joint apart from my left elbow. I have a habit of falling downstairs, knocking things over and genuinely causing a mischief to myself. I'm only 21 but at times I feel like a granny I've not been able to physically get out of bed on several occasions, but I want to do something now. I'd rather be "clumsy" and more toned then clumsy and flabby.

    I've tried Pilates and Yoga (downward dog was hilarious but painful, my wrists collapsed and I head butted the floor...several times, I'm not a quitter :p), they're really not for me. Things slightly faster pace like the treadmill scare me because my ankles want to give/do. I found I like aerobics surprisingly but I couldn't go every week because my body needed time to recover. However, my BHMS I discovered WATER AEROBICS was amazing, weight was off the joints and although I still wobble about I was having fun because I was splashing haha. Now I can't find one to fit my schedule, but seriously recommend it!!

    Feel free to add me :). xx
  • MoonyRose
    MoonyRose Posts: 52
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    For pain, I find a hot bath or shower works. Neck pain I put a microwavable wheatie on it,lower back hot water bottle. I also massage my own neck that helps. I have orthotic insoles for my gait which kinda helps, however if I'm having an off day my body hates them. Prosthetic muscle thing for my hand that helps, managed to screw over my ligaments to match the gammy wrists. I also wriggle a lot, staying still makes you seize & hurt so keep kicking your legs out.

    I also have a variety of pain meds; varying strengths of cocadomol from 30mg-15mg I try not to take them unless my eyes are watering from the pain. I hate how fuzzy it makes your head and it makes you tired. I was on diclofenac for the pain, but that gave sent my stomach loopy and made me have a suspected ulcer and all sorts because I wasn't put on lanzoprozole at the same time. So I am off the NSAIDS I'm afraid, so I can't help with NSAIDS.Hope that helps a little.

    Exercise aforementioned above :)! x
  • boppinbadger
    boppinbadger Posts: 12
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    I've tried Pilates and Yoga (downward dog was hilarious but painful, my wrists collapsed and I head butted the floor...several times, I'm not a quitter :p), they're really not for me.

    My physio told me to avoid yoga like the plague (I was seeing her after injuring myself at a class - same problem here, face plant on the floor after my wrists gave way!), but she did say pilates could help as it is focused on more gentle strength building rather than increasing flexiblity which is the last thing you want! As with anything, classes vary teacher to teacher and you need to find one that understands your problems and will work around them rather than push you through them.

    Oh and your other post about wriggling, I'm exactly the same - even in my sleep! x
  • ivan1964
    ivan1964 Posts: 435
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    Hello and welcome here. You can do anything you put youyr mind too. I hope you have a great day and feel free to add me if you wish. :smile:
  • MoonyRose
    MoonyRose Posts: 52
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    My physio told me to avoid yoga like the plague (I was seeing her after injuring myself at a class - same problem here, face plant on the floor after my wrists gave way!), but she did say pilates could help as it is focused on more gentle strength building rather than increasing flexiblity which is the last thing you want! As with anything, classes vary teacher to teacher and you need to find one that understands your problems and will work around them rather than push you through them.

    Oh and your other post about wriggling, I'm exactly the same - even in my sleep! x

    Glad it's not just me face planting mats, I wanted to die haha. I actually was really lucky when I was in London because I lived in the correct area to get 15 Pilates lessons for free in a nearby centre with my physio (which was just a lucky coincidence). It was good fun on the NHS, but unfortunately I was about 40 years younger than everyone which made it a little awkward when I was weaker than some of them. As you said though it's better having a teacher that understands it's not ok to push too far sometimes.

    I've moved now, found the aqua aerobics which was open for "any body" meaning they accepted people with disabilities and catered for them (even blindness) and at 50p a session I was more than willing to go. Now that's doesn't fit in with my schedule. I did try belly dancing once and found that both funny and fun, no major aches the next day so I recommend that too.

    I wriggle in my sleep too, it's like a hurricane attacked my bed in my sleep.
  • jes1975
    jes1975 Posts: 15 Member
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    Waves a hypermobile hello
  • walkingforward
    walkingforward Posts: 174 Member
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    Determined to get and stay healthy despite HMS.

    Looking for friends here.
  • JoyfullMovement
    JoyfullMovement Posts: 107 Member
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    As far as I can tell, I'm hypermobile everywhere... knees, hands, wrists, fingers, elbows, ankles, etc. I wasn't diagnosed until I was 26 or 27 (can't remember for sure, though I know it was recent), but knew something wasn't quite right when nobody believed that I was constantly in pain. Ah well, now that I have an answer, it's much better.

    I want to be a runner. Not sure if it's the best idea, but I've always wanted to. My physical therapist, when I asked his opinion, told me in no uncertain terms that I'm crazy. His exact words: ARE YOU CRAZY? I know my limitations, so I'm going to VERY slowly work my way up to it; if I can't, I can't, but I'll at least know I have tried.

    I have the same issue with my lower back - I know my hips are NEVER where they're supposed to be, and that will sometimes throw off my knees as well, in addition to my back. Annoying.

    It's rainy and humid today - as much as I hate the winter, I hate the summer more - the humidity makes everything worse. Today is going to be a bad day. The pain has already settled into my joints, and the last thing I want to do is work. I'm here though, so it will be interesting. This is also going to be the first summer that I have a child to raise - my son is 8 months old, and he's a busy boy.

    I'm curious to see how anyone else deals with the pain, if you have children? What do you do for your pain? What do you do for exercise?

    Be careful running. I ran for years. My hips were very flexible. I am only 51 now and my left hip is bone on bone and needs replacing. I do not know the running was a contributing factor but suspect it. I miss running so much :(
    Best of luck!
  • siobhanervine
    siobhanervine Posts: 1 Member
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    Is there anyone now on here with EDS/Hypermobility? I see some of the discussions are old. I'd love to chat to people who have it and are trying to loose weight too. Siobhan
  • danzrlove
    danzrlove Posts: 445 Member
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    @siobhanervine Hi recently diagnosed and trying to loose. I would love to chat too

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