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JHS getting steadily worse, how do I cope with it?

Posted , 3 users are following.

missolympic
missolympic

Hi, I was diagnosed as having JHS last year after years of pain. It is steadily getting worse and I am racking up a long list of injuries and complaints that are beginning to get unbearable. I struggle with pretty much every joint I have, and whilst I am not immobile, I am finding sport and activities less enjoyble as they are painful and the fear of injury is getting stronger. Nothing really seems to heal because it's constantly getting re-injured, and every time I see the GP I feel stupid for being back again - I feel as if they think I am just a teenager making it up! The physio just sends me off with a print out of exercises and thats that.

I am getting really fed up of the whole thing - does it get better or will it just keep getting worse? I am still at school and struggling to keep up with my sporting activities and daily life. Does anyone have an ideas about how to manage it? I have braced things but find they don't help that much and I don't want to become a walking brace! I'm struggling to work a part-time job as a waitress as well. 

Thanks x smile 

0 likes, 3 replies

3 Replies

  • amylou1996
    amylou1996 missolympic

    Posted

    Hey, I don't have JHS but I do have something similar called EDS that I was dignosed with about 7 years ago, I have found that over the years my condition has gotten worse the older I have got so I have found one or two ways to help deal it, hopefully some of this will help you out a bit!

    I find the best way to deal with pain especially is to use things like a hot water bottle to put on your joints or have a hot bath, it doesn't take away the pain but it does help to slightly ease it. I have also found that it is best not to use braces as you become reliant on them an it slowly makes your mussels weaker so it makes it harder to do activities in the long run! I'm also a waitress part time while I'm in uni and honestly your best bet is too keep going and keep topped up on pain killers as I found that when I actually stop doing things my mussels and joints will seaze up which makes the pain like 100X worse than it already was!

    Do you have any problems with your joints dislocating? Nearly everyone of mine has a tendency to dislocate on its own, especially my shoulders and collar bones are the worst, if you do have this then for example when your watching tv put a pillow on your knee and rest your arms on it to stop them from dropping down as far!

    I have gone to soo many different physios since being diagnosed however I found that they just did what yours are doing, giving exercises that I actually couldn't do then shouting at me for not doing them even though I physically couldn't, I no longer go to them though as they told me they didn't know what they were doing!

    All in all You just have to find a way to live with it and know what your a physically capable of doing, make sure you don't push it cause it can cause pains as I'm sure you already know! With work I don't know how understanding your boss is, but if they are like mine if I need to take a break and sit down cause I'm pain they will let me or if I can't carry plates anymore cause a joint won't stay in they will let me do other jobs, so possibly just talk to them and if your struggling ask them if you can have a break to recover slightly! I'm sorry for writing so much,

    I hope atleast some of it has been helpful ☺️X

    • missolympic
      missolympic amylou1996

      Posted

      Thanks for all the info - it was helpful!

      I do use hot water bottles a lot due to the amount of muscle tears and sprains I get, and it helps with the sciatica in my back. I am always reluctant to take painkillers, as I just feel like I have to take them every day and I don't really want to become dependent on them or anything! I get terrible headaches quite often - apparently due to the JHS - which does often require me to take them anyway though sad

      I don't have any massive problems with dislocating joints - my knees often slide out of place and get stuck, and sometimes I suffer from my hip partially dislocating, but I haven't had any issues with my shoulders and collarbones yet (fingers crossed). 

      I have given up with physios for now, until I get an injury that they can actually treat, because they don't understand and it's getting really tiring trying to explain that I can't do what they want me to do and I'm not making it up or exaggerating!

      I am beginning to get better at limiting myself from doing things I shouldn't, but I am heavily involved in sport and always have been, and I struggle with talking myself out of doing things when I desperately want to compete and stay on teams! I think I need a new hobby smile 

       

  • debraUK
    debraUK missolympic

    Posted

    Hi Arevyou in uk or us? I'd highly recoment Dr hakim and his team who are the top people in jhs/eds uk world I think. After almost 15 years of getting worse and noone taking my pain seriously Dr hakim explained what's happening to my joints and the physio team are going to create a personal plan for physio and taping/bracing. Hopefully this will stop the re-injuring. I had to go direct privitly in the end as chronic condition health plan wouldn't cover and nhs specialist didn't know enough. But best money I've ever spent!!!! Looking forward to being able to walk, carry etc without paying the penalty after! If not in uk perhaps someone could regimen a top jhs person or special jhs clinic near you? Hope all goes well.
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