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Recently been diagnosed with Joint Hypermobility Syndrome

(11 Posts)
sadandanxious Fri 16-Dec-16 14:05:32

So after years of suffering pain in my joints and back I've recently been diagnosed with JHS. The consultant said it's nothing to worry about it but then also said my JHS is really bad, my joints move considerably more than she normally sees with people with this condition, I can't exercise much and there's very little I can do about it.

I can't sit down for too long otherwise my back seizes up, I can't stand for long without being in immense pain, I can't walk anymore (I used to be an avid hill walker) without being in immense pain after about 15 minutes. Even day to day things like cooking dinner hurts because of the standing / holding heavy pans / chopping food.

I feel pretty down about it all. I work in an office but typing hurts my wrists and arms as does sitting down for a while.

I know many mumsnetters have JHS. How do you manage the pain and what do you do for work? How do you cope with day to day tasks? I don't know anyone else in real life that has had this diagnosis.

Mehfruittea Fri 16-Dec-16 14:24:47

I have EDS/JHS and you sound exactly like I was when first diagnosed. I would recommend you push hard for the right medication to support you. Not just pain relief. Bear in mind you will need to increase dosages as time goes by, JHS is progressive and you will get worse.

Don't feel down though. The best thing you can do to help yourself now is exercise. Even though it hurts and you're tired. I work with a private physio to strengthen my muscles when the tendons/ligaments are overstretched and not supporting the joints. Stronger muscles will help to prevent dislocation and over extending the joints (which causes a lot of the pain).

Massage - because your worth it! And you have probably be walking around tensing all of your muscles every waking hour, just to hold your joints together. This causes fatigue. Have a massage to help relax those muscles and use their strength for core support in the right way.

Seek support and ask for help!! God I wish I was good at this bit!!

Best of luck - flowers

sadandanxious Fri 16-Dec-16 14:44:33

Thank you. I'm sorry to hear you have the diagnosis too. I've been referred to see a physiotherapist which should help. Who do I ask about medication - the GP or consultant?

I was told the only exercise I can do prior to physio is Pilates.

Mehfruittea Fri 16-Dec-16 16:25:49

Hiya I found the NHS support pretty poor and had to become an expert and my own advocate to get the medication I needed. My rheumatologist wrote to my GP with the medication and then my GP has prescribed it. Alternatively a pain clinic will go down that route too.

The exercise I do is Pilates based core strengthening with additional work on my legs as my hips are badly affected. I now use a wheelchair so do exercise to prevent muscle wasting too.

I really struggled initially as my GP wasn't supportive and my first rheumatologist discharged me with my diagnosis. I had to go back round again to get the right pain relief.

My journey has been pretty tough and I've struggled to hold down a job since I got sick. Everyone experiences their symptoms differently - your outlook is not necessarily the same as mine! Please don't feel down about your diagnosis, this should now be the beginning of getting what you need now. Best of luck! Xx

PickAChew Fri 16-Dec-16 16:28:17

Has your consultant referred you on to OT and physio. When I was first diagnoses, I had a course of hydrotherapy which helped me to get my lower back stabilised

blankmind Fri 16-Dec-16 16:31:39

Hope you don't mind me asking, I'm interested in asking for a referral for dd. Which specialist can diagnose JHS or EDS?
Is it a Rheumatologist or someone else?

PickAChew Fri 16-Dec-16 16:36:53

Should have read on!

But yes, the hydrotherapy was helpful for my back. Not so much for my knees. I somehow manage to have poor muscle tone in my legs, despite walking miles each day.

sadandanxious Fri 16-Dec-16 17:04:42

blank I don't mind you asking at all. I got referred to the musculoskeletal consultant as one of my biggest issues is back pain.

pick I'll have to ask about hydrotherapy. My employer is helping with regards to OT but I can only assume that'll be to help in the work place rather than at home too.

yellowpostitnote Sun 18-Dec-16 10:50:07

Massages, spiky balls to roll on, Epsom salt baths and swimming are all very helpful for me. I do Pilates but in all honesty I need specific physio too and some yoga stuff for hamstrings etc.

Mehfruittea Sun 18-Dec-16 13:10:54

I saw a rheumatologist for a diagnosis. I have had to pay for private physio to get exactly the support I need. I've also been through a whole host of different meds to get the right combo. For me, I wanted to achieve the right level of pain relief and mobility to stay in work.

delilahbucket Wed 28-Dec-16 21:58:47

Hi, I have jhs and I was wheelchair bound with it five years ago due to my pelvis. I'll never be 100% but I found prolotherapy, private physio and then pilates have helped me. I have to do daily stretches and exercises along with a weekly Pilates class to maintain but I've had a massive improvement.
I struggled to find any painkiller that worked. At the height I was popping 17 pills a day and was still suffering. Now I take nothing because the only affect I get is feeling out of it while still hurting!
I pace myself every day and as I'm self employed I can work around pain. I never spend long in the same position as, like you, I can't stand/sit for long periods.

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