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I've been diagnosed with hms and it's got unbearable

Posted , 6 users are following.

markwarrilow123
markwarrilow123

I've been double jointed for years and last week my doctor has told me that I've got hms and so does he, he was trained to do surgeon but had to stop as his got so bad. He said I am a 6 out of 8 my shoulders elbows and thumbs on both arms are killing me all day every day I do a very had job and he said that I should stop doing what I'm trained for or I will do major damage. I'm getting told that I should take the injection please help

2 likes, 9 replies

9 Replies

  • erykah71
    erykah71 markwarrilow123

    Posted

    Hi Mark,

    Sorry to hear you've got hms and that it's affecting your job. 

    Like you, I have constant pain in both shoulders, upper arms, elbows, wrists and thumbs (but left side is worse) I have been off work for 9 months because the pain and fatigue is unbearable 99% of the time,

    I had the cortisteroid (think that's what its called) injection in my left shoulder which helped for about 5 mins. The stress of having it done wasn't worth the short term relief, plus I've heard that its not an ideal solution for people with hms.

    It might work for you tho. unfortunately it's trial and error with different treatments until you find the right one. I'm still looking for mine

    Good luck 

    • markwarrilow123
      markwarrilow123 erykah71

      Posted

      I have been told that the injection just masks the pain and ware and your more likely to cause more damage because you don't know what your limitations are, and that when you start you will always need them. I'm going to try a few things before I do that but I do appreciate the advice thanks.
    • Wrencoldtoes
      Wrencoldtoes erykah71

      Posted

      I've had Cortico injections in my thumbs. Horrid to go through and for me at least it did nothing. Ibuprofen gel is a blessing and Naproxin on bad days. Glucosamine helps and fish oil too, but like you I have yet to find a solution :-(
    • erykah71
      erykah71 Wrencoldtoes

      Posted

      I take the maximum Naproxen, Co-Codamol, Pregabalin and Sertraline every day and that doesn't even touch the pain. That's why in desperation I tried the injection which, like I say was a waste of time.

      I haven't heard of Glucosamine I will have to look into that one, thanks.

      I have been having physio with a specialised hms therapist and that helps some days but I still have to be careful, even though I do just 4 exercises 5 times (i.e lay down and reach my hands above my head 5 times) it still knocks me for six most days.

      I have written to my MP to try and raise awareness for this and similar chronic invisable conditions and he is going to put my case to a Government Minister so who knows, maybe one day we may get better meds and care. Here's hoping

    • Wrencoldtoes
      Wrencoldtoes erykah71

      Posted

      Glucosamine Sulphate works by restoring the fluid in the joints. It's a supplement but one of the few things I have found that helps. There is also a joint pain targeting gel but I forget it's name. I will try to find it for you.
  • hinny
    hinny markwarrilow123

    Posted

    Hey Mark, 

    I think your doctor is right. The worst thing for us is that because this is such a little known condition, it is very hard to diagnose early. So, we carry on our lives as normal, and then we pay the consequences. My favourite thing in the world is rambling for miles with my dog, and I've had to give that up. I am so lucky compared to you, I just need to keep readjusting my seats and foot rests to work (I am a translator). When I look for a job outside, I know I can't afford to do a job that requires standing up, and even stacking shelves is dangerous considering my elbows and other bits often give way!

    However, receiving the diagnosis a few years ago at least made me stop feeling frustrated with myself, for I had pain doing the simplest things and I didn't know what was wrong with me.

    Yes, if you want to carry on doing your hard job, you have to drown yourself in pain killers, but do you really want that? Is there really no way you can vary the work, or look to a new life with a new type of work? If you did, you could postpone the injection or any joint replacement by just taking it easy.

    One GP (one of the few who actually understood HMS) said, quite plainly: simple, whatever you do for an hour, rest for two hours. And he meant REST, feet up and all. You can imagine how that reduces normal lifestyles. At the same time, if you do do that, at least you save yourself a lot of pain (not all of it).

    Welcome to the forum though, you are not alone!

    I would avoid cortison as much and as long as you possibly can.

    • markwarrilow123
      markwarrilow123 hinny

      Posted

      I semi dislocated my shoulder 9 years ago and it's just gotten worse down my arms up to now. My daughter was diagnosed last year with her legs and it's horrible because I've given it to her and looks like my son has it to. I cycle a lot and my legs are very strong it's just my arms that's the trouble. I'm a hgv mechanic and it's all I no to do I'm good with my hands and have a chance to be a caretaker but it's a huge drop in wages and I have to provide for my family. I don't take pills but I'm trying to do hot baths with muscle soak and other bits before I need pills and worse the injection. I lead a hectic life always doing something. Would exercise help it tho been trying to find out stuff online but struggling to see what I can do. Thank you for all the help is greatly appreciated just horrible condition to have but thank you
    • hinny
      hinny markwarrilow123

      Posted

      The way I have understood it is that you haven't given it to her, it's actually incredibly common, and clearly the less you know about it the more likely you are to cause it damage. Your daughter now she knows, she can be sure to do things carefully: my own daughter is doing trampolining! The catch is that the more muscle you have, the more it replaces the job the joints do, but you can't build new muscles if you're in pain. So yes exercise does help immensely but you have to be sure you're not causing further damge, so the trick is to find someone who KNOWS about hypermobility. Whatever you do, keep the exercise much gentler than you would normally, and try and exercise the movements you need for your work, to gradually build resistance. Also, I'm not sure if this would be enough for you, but my GP has prescribed (but you can buy over the counter too) Ibuprofen 10% Gel. It does wonders for my knee, it's only temporary but it's better than stronger stuff. Remember this condition can easily lead to anxiety and depression, which in turn I feel makes it worse, somehow. So keep your spirits up, take your work more slowly at least, and carefully, don't strain etc. You can probably carry on doing it, little by little. Good luck!
  • Rebeccarockchic
    Rebeccarockchic markwarrilow123

    Posted

    Hi,

    I was having a read through and was brain storming anything else i could offer advice for. My local physio ran pilates classes. Dont be too put off there was a couple of men in the group and swimming. both core muscle strengthening exercises. The ligaments in the body are too loose so all the joints move around too much so the muscles have to work harder, its important to keep them strong but not over use them. If you have to take a pay cut you could make an appointment with citizens advice about tax credits or personal independance payments, you can claim these and work would boost your wages up. posisble help with rent and council tax etc. There are schemes to help people stay in work with illness/disabilities. 

    I have just said on a previuos post re chargable hot water bottle and re usable ice pack for pain, electric blanket, epsom bath salts and defo the rub for the knees/back and shoulder - i cover my self in it daily. I understand how difficult it is when in constant pain trying to manage that and support your family. There is help out there. dont suffer alone.I worked in manual jobs all my life i did not know the consequeces of it and its damaged me beyond repair! I also understand about the sadness of passing it on genetically is not nice to see sad such a complex and harsh condition. would not wish it on anyone.

    regards

    rebecca

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