Newly diagnosed, any advice?

Posted , 4 users are following.

Hi,

So I have JHS with secondary Reynauds.

I scored 9/9 and have osteo arthritis in 10 joints so far. I'm only 34 and I'm feeling very depressed by it all.

I suffer from chronic fatigue and a whole host of other associated problems.

I've been referred to a OT, PT and Podiatrist. Thankfully work have been great but I'm scared of what the future holds.

My poor partner is so supportive but he has MS and I can't help wonder what strain my problems puts on him.

Any advice would be great!

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  • Posted

    Hello

    Im sarah I have jhs it was diagnosed two years ago

    Along with degenerative disc disorder basicaly because my jhs was not spotted untill so two years ago it had a major effect on the way I walk therefore its ruined my spine .

    I have a score of 8/9

    I have broken 14 bones had over 60 dislocations

    And I went to the doctor for year and years saying something is wrong my back started hurting whenn I was 14 and I was brushed off with "itss growing pains "

    After a bad do with my back it was finally investigated and they fount I have degenerative disc disorder

    Basicaly my discs have been crushed in

    L2,L3,L4,L5 and S1 and a bit of arthritis at the base of my spine

    And I have jhs effecting every joint

    Im 24 years old

    Xxxx

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  • Posted

    Hi I was diagnosed in sept 2014 with joint hypermobility syndrome/ehlers danlos syndrome aged 34. Im 36 this year. It often gets misdiagnosed and because it is so complex gets missed for years. The damage gets done.I often think if i had known i had it when i was younger could i have done things different started physio earlier..worn insoles earlier or would it all have happened anyways! The joints move around to much sublax and sometimes dislocate causing the early on set of osteoarthritis. it sounds like your doing the right things phsyio, podiatry. Have you thought about pilates? its the recommended exercise its basically like doing an hour of the exercises the phsyio will give you. My nhs physio ran the local pilates class. I also go to CBT therapy that you can be referred to help you cope with living with a long term pain condition. I use epsom bath salts, i have very cold hands and feet, i have a re chargable hot water bottle best thing ever, recently got a electric blanket and i also have a reusable ice pack for swellings. i use a rub prescribed by the doctor for the joints something you could speak to the doc about. 

    I had to give up my job as a manager last year due to pain/too many issues, not in a good place to be doing any kind of job right now, i have worked hard all my life. I know a lot of people think about re training or make sure they get a lot of help through their work place/government to help them stay in work xx becks

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  • Posted

    Awe you poor girls :-(

    The weird bit is I've barely had any injuries. I broke my tailbone (coccyx) when I was young and redid it a couple of years later, my thumb base joint subluxates but that's it. The injuries aspect terrifies me!

    Love the Epsom salt idea, I keep meaning to get some. Where is the best place?

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