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Hypermobility newbie

Hello 👋🏻

I have never ever posted in a forum before

I am a 34 year old healthcare professional, I have been diagnosed with joint hypermobility syndrome 4 years ago, I also had OA, hip impingement, dysplasia, PVNS and synovial chondromatosis all in my Right hip I had that replaced 3 years ago now and all is well with that (woohoo one thing has gone right lol)

I am currently struggling with flare ups from hypermobility syndrome and having to take time off work I have been off almost 4 weeks now and I am still struggling. I am struggling to get out of bed due to stiffness I always get up and ready it just takes me a long time, doing simple tasks results in pain and stiffness. I had a day on Friday where I just couldn’t get up out of bed and had to have assistance from my partner. Needed help walking short distances. I feel I was given diagnosis and told to get on with it there’s nothing they could do the pain I was experiencing was “just” my hypermobility. I have seen 2 rheumatologist now one nhs one private and both had no suggestions apart from manage your pain I felt as if they weren’t really interested.

I wondered if anyone else has flare ups with joint hypermobility, how long they last and if anyone has any tips to try get back to some sort of normality as I am struggling with the guilt of being off work again always feel letting colleagues down 😢

I also wonder if anyone has came off medication prior to getting pregnant as that was my aim before this flare up so I am anxious about reducing medication now.


thank you x

Comments

  • AnnaAnna Moderator Posts: 225

    Hi @Laura__86 and welcome to the online community,

    It’s good to hear that your various conditions that affected your right hip have been successfully treated by your hip replacement three years ago. However I see that your joint hypermobility syndrome is flaring at the moment and you are struggling to deal with the pain. You would also like to hear from other members who have come off their meds prior to getting pregnant.

    Members of our community live with a variety of conditions and I’m sure that they will respond to your questions with friendliness and support. You might be interested to read more about the condition from the Versus Arthritis website - link below. It contains various suggestions for treating the pain that this syndrome can cause, including taking ibuprofen or other stronger non steroidal anti-inflammatory drugs ( NSAIDs) It would be worth talking to your GP again because you should not have to endure pain when there are treatments available. It might be that you could be referred to a physiotherapist since gentle exercises can also help alleviate the pain.


    There are also members on the forum who have experienced stopping their meds before getting pregnant. It was something I did ( many years ago) and fortunately I was fine throughout both my pregnancies but had flare-ups once my daughters were born. Of course everyone’s experience is different and it would be best to talk to your GP or rheumatologist before stopping any medication.

    I wish you all the best, and I look forward to hearing how you are getting on.

    Anna ( mod) : )

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