hypermobility syndrome

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Replies

  • gazz777
    gazz777 Posts: 722
    Hi all,

    Very informative.

    I'm a guy that others seem surprised how bendy I am - to me it's normal.

    In Australia it seems IMPOSSIBLE to get formal diagnosis beyond BJHS (benign joint hypermobility). Benign, yeah right !

    I was never sporty and always fat until last year - lost 70-80lbs.

    Now my health in some respects better, in many respects worse. In many cases, to outside observers ... I still seem the same but my point of view is moving.

    I do Les Mills Body Balance and am working on my core and overall building up where I can.

    My main goal now is an attempt at being 'good looking' on the outside and a better person on the inside.

    Sleep is stuffed up, depressed a lot of the time, poor self-image.

    I feel very alone in the world, yet being one-of-a-kind can do that lol, so I seek hypermobile friends. As well as 'normal' folk who understand and support.
  • gazz777au
    gazz777au Posts: 157 Member
    BJHS here.
  • Inlet
    Inlet Posts: 135
    A sweet friend of mine from high school has had to cope with severe EDS for years now.
    My heart goes out to all of you.
  • mjjnbla
    mjjnbla Posts: 6 Member
    Dear Gazz74,
    I was first diagnosed w/ arthritis in my hands in 1980s, but I already was living with neck pain, costochondritis and TMJ. That rheum did the Beighton measurements, but he did not tell me that was what he was doing or what it was called. He told me I had "lax" joints and that I should not do repetitive tasks.The first time I heard the word "hyperbobility" was from rheum #2 in Sydney. It was 1995 and HMS was not yet considered to be a form of EDS. I can't remember the Doctor's name, again the measurements were done and he said I was "hypermobile" in every joint he tested. He didn't tell me that was my diagnosis. It was just last year when I again went to a new rheum (#3 who diagnosed me with depression lol) that I came home and googled hypermobility. Once I read the discription I knew it was me! I then made an appointment with a geneticist and she gave me a diagnosis. Now rheum #4 seems to believe me! She prescribed Vimovo for the pain and I feel so much better! I am going back with my again normal blood test results for a follow up. She said she will work with me to decide if I need surgery at this time. I know it is frustrating when you don't get a firm diagnosis. I would recommend writing down everything all your symptoms, and those of family members. Then get copies of all of your tests, blood, xray, Beighton whatever you have had and go to a geneticist. There is no blood test for HMS, but via your information and examination you can be diagnosed. Where in OZ do you live? We lived in Sydney for a year. If I had not been laid-up with HMS it would have been a perfect experience! We love Australia!
  • CoderGal
    CoderGal Posts: 6,800 Member
    Anyone reading the coconut oil and vinegar thread? It seems to be helping a lot of people with joint pain.
  • kitkatkmt
    kitkatkmt Posts: 178 Member
    Hello all, would love to have some hypermobile friends, as I am as well. Helps to have people understand what you're going through...
  • boppinbadger
    boppinbadger Posts: 12
    I'm hypermobile too (and am typing this with both my wrists bound!). I was first diagnosed when I was 17, after months of not being able to even get up or dress myself due to back pain. I had always suffered with various aches and pains in my knees or hands as a child but, as they tend to be, they were put down to growing pains.

    One thing that I haven't seen anyone mention is where they are hypermobile? Being hypermobile doesn't mean all your joints necessarily are hyper, you can get it in just one or two parts of your body. Unfortunately when I went to see the specialist in london for diagnosis I passed the test for hypermobility in all joints except my elbows (whoo hoo - one part of me is normal!!). I also tend to be worse in the right side of my body compared to my left, and the pains tend to happen more on that side of me as a result. Primarily my pain is in my lower back which aches on a regular occurance, although I'm told that is more from my hips being out of place which cause pain in my back rather than the pain coming direct from my spine... never quite understood that one but I'm sure the docs know what they are talking about. Then the rest are just as I injure myself overdoing things or just randomly. The one I hate the most is my jaw which I have to go to hospital to have them click back in, luckily that hasn't happened in a while!

    Now at 31 I still get bad days, especially after prolonged periods of pain when you just can't get mind over matter any more and it all gets too much to cope with. But over all I'm used to it, I enjoy life, I dance 2-3 times a week at least (which has helped my fitness greatly), and walk the dog every morning no matter how much pain I'm in when I wake up - I often find that fighting through the first 10-15 minutes means everything starts to ease up a bit. I'm lucky to have understanding doctors who have no quams about giving me repeat prescriptions of strong painkillers as they know I'm not going to be taking them unless I really feel I can't cope without them (maybe 2-3 days a month). Anyway, I've rambled on for AGES, sorry about that! If anyone wants to add me to have a HMS friend, feel free :)
  • kitkatkmt
    kitkatkmt Posts: 178 Member
    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?
  • boppinbadger
    boppinbadger Posts: 12
    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 was told in no uncertain terms to avoid running as it is too high impact, it can often cause injuries and wear down joints in non-HMS people so running when you have volnerability to injury is just going to make things a lot worse...

    That said, being one to not let it stop me doing anything I have done the odd bit of jogging. The key pointers I was given when I told my doctor this was that if I was determined I was going to do it then I should stick to running on grass and not concrete. Invest in the best most shock absorbing trainers you can find, and as you said - build up slowly.
    And a longer slower jog is far less likely to hurt you than a fast run, you have more time to focus on your posture and that you are putting your feet down correctly (I tend to put my weight on the outer edges of mine as my body gets out of line - funny I can always tell when I am about to be in a lot of pain by how my feet hit the floor!).
  • boppinbadger
    boppinbadger Posts: 12
    It's rainy and humid today - as much as I hate the winter, I hate the summer more - the humidity makes everything worse.

    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?

    I find it's change of season that effects me - I'm ok in winter and summer, but for those couple of weeks where there is a dramatic change in temp/humidity etc it takes my body a while to adapt and everything goes wrong!

    I don't have children, but I hope to. Do you mind me asking if pregnancy/childbirth had any extra problems down to the HMS?

    For the pain, I try to avoid taking pain killers until I'm at the point where I really can't cope without them. First I'll try gentle excercise and movements to try and ease it (going for a walk with the dog usually helps click my hips back into place), then if that doesn't work I'll move onto heat/cool packs (alternating, never more than 5 mins with each, as advised by physio, and never at extreames of temperatures, just warm and cool not hot and cold), and for wrists/knees/ankles I'll often bind them up as I find pressure helps the pain as well as keep them in place, but I don't like to do it too often as then you can actually weaken the joint further if you become reliant on binding to keep it in place. Sometimes I find going dancing kills all pain at least temporarily, I don't know if it's adrenaline or just psychological, but when I get on the dance floor it all just melts away! But then it sometimes backfires and I feel twice as bad after...

    Excercise I do is mainly low impact stuff, walking etc. I also found lindy hop dancing has been an amazing help - focusing on posture and control of all your joints to make the moves work really helps strengthen your joints and your core. Any core strength excercises are brilliant for HMS... I have pages and pages of them from the physio but must admit I can be a bit slack at doing them unless I feel I'm losing my ability to hold good posture... I'm very much an 'excercise should be fun' type person, doing core strength excercises always feels a bit like having homework :(
  • MoonyRose
    MoonyRose Posts: 52
    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
    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
    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
    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
    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
    Waves a hypermobile hello
  • walkingforward
    walkingforward Posts: 174 Member
    Determined to get and stay healthy despite HMS.

    Looking for friends here.
  • JoyfullMovement
    JoyfullMovement Posts: 108 Member
    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
    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
    @siobhanervine Hi recently diagnosed and trying to loose. I would love to chat too
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