Fibromyalgia Action UK

Anyone with Joint hypermoblilty syndrome

i am only 16 and i have had this all my life. starting to hurt my wrist too...anyone to reply to me

nhs.uk/conditions/joint-hyp...

what NHS has too say about it

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Hi my 14 year old daughter has this mostly in her ankles she did have physio and it did help with the pain but she also suffers with IBS acid reflux and fibromyalgia have you tried physio

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no yet, i might try it out poor her, i see what i can doo

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Hi there Stevan,

I don't have hypermobility myself, but I do know of several members here who do, and I hope that as the day goes on they will come and give some advice. I started having fibro at 17 although I'd experienced all the symptoms for some time prior to being told I had fibrositis which is what it was called back then.

I'm wondering if you are able to wear any support on your wrists which might keep them more stable. Have you spoken with your GP about this? if not I would strongly advise you too. There are things that they can do to help you and I think this would be a good first course of action.

Sending you lots of positive vibes 😊

Foggy x

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Firstly, my name is Stefanie (a very very weird spelling of Stephanie). Don't worry, many people don't seem to understand my name. You must be in pain ALL the time which is so sad. At the moment, I don't wear arms supports this is because I don't know when the pain can happen. I wish I could find out when the pain happens, it normally occurs at night while I am sleeping...it also effects my kneecaps at night too. The good news is that my doctor does know my pain :) someone does! But the thing is that they said they will consider my options as I turn 18...another 2 years of pain :( terrible! At the moment, they say my best option is to have a knee operation. Basically, the surgeons will remove my ball and socket and replace it with a new one, so technically a new kneecap. They say that this could help but it's not their priority! Thanks so much for the help, if you need me then I am here for you. Love Stefaniex

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Hi again Stefanie 😊

I know it sounds like rather a drastic thing to have your knee replaced, but it may well be worth it. I had arthritis in my shoulder (I used to swim at county level) and I had a complete shoulder replacement in 2011 and it was the best thing ever, I now have a full range of movement and better still, the horrendous pain I was in has gone!! Yes, it did probably take a little longer than someone without fibro, to get on top of the pain, but I can assure you it was so so worth it.

Bless you for saying your there for me if I need help, that is such a lovely thing to say, but remember I too am here to help and support you in whatever way I can and at any time. Do feel free to PM me anytime (just click on my name and then it gives you the option to send me a message 👍🏻)

Sending you even more positive and pain busting vibes😊😊

Foggy X

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Thanks Foggy, I will PM you now :) love lots from Stef xx

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I have joint hypermobility. Used to love it when I was younger as my joints could do very strange things and I just ignored the pain. Now the pain is added to Fibro and osteoarthritis. My advice to my younger self would be to realise that I was doing harm by pushing my joints into strange positions.

I agree with using hand/wrist splints to help with the pain, but be aware that if you use them during the day the muscles surrounding the joints will weaken. Find out how to refer yourself for physiotherapy in your area. Your GP may have to do this for you. They have specialist exercises for hands and wrists which will help to strengthen your support tissues like muscles to reduce the pain. Get as much advice from medical professionals as you can.

I hope you manage to get some relief. You will learn how to live with the difficulties, but it takes time 🐸

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Thanks so much! Means a lot that are people that are sort of in the same situation as me....like I said before that I normally have pain at night...thanks a lot again. Love from Stefaniex

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Hiya I have EDS Type III. I have had it all my life, but from the age of 14 was when all of the main problems really kicked in (not to concern/panic you). But supports can help, just make sure that your muscles don't get too weak/you start to rely on them as it will cause you more problems down the line. Physiotherapy is a great thing, I've had it on and off since the age of 9 due to JHS. Strengthening is one of the main things to focus on. Make an appointment with your GP, they'll be able to point you in the right direction and make any necessary referrals for you.

Wishing you all the luck in the future.

Kirsty X

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Thanks, so much for this message means a lot. Check my earlier reply to Fibrofoggiest for my answers to your questions.

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Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are experiencing this issue, and I sincerely hope that you can find the answers that you are looking for.

it is not something that I suffer with but I want to sincerely wish you all the best of luck with this.

All my hopes and dreams for you

Ken

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Thanks, so much for this message means a lot. Check my earlier reply to Fibrofoggiest for my answers to your questions.

Thanks Ken

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