Hi, my name is Loz! :)

loz_

Hey everyone  

I’m Loz and i’m a 25 year old woman recently diagnosed with joint hypermobility syndrome. I have been hypermobile my whole life and spent my whole childhood contorting myself into weird positions to entertain my friends and family and I would constantly be showing off how bendy all of my joints are. My first dislocation was at the age of 12 at school and there was no trauma to the joint to cause the dislocation. I have always suffered joint pain and all of the symptoms I have now but never really noticed until the major pain and more frequent subluxations started in late 2021. After that I noticed that I was constantly fatigued and often needing to sleep for hours during the day despite sleeping for at least 10 hours the previous night, I was in extreme pain in my joints most of the time with frequent subluxations in my shoulders and elbows, I noticed I have always bruised easily and my skin tears easily and heals slowly/poorly, I have always had GI issues that were becoming more prominent in my life, my coordination wasn’t brilliant and I am extremely clumsy, I felt dizzy when I stood up sometimes and all of this prompted me to make an appointment with my doctor who did an examination and referred me to rheumatology. When I saw the rheumatologist she did the beighton score test which I scored 8/9 on and she did an examination on my other joints which were also very hypermobile. She listened to all of my symptoms and checked my skin. She said that I have atrophic scarring in some places and she also said my skin is extremely soft (which I often get compliments on and I don’t even use any creams!). She also said my skin is slightly more stretchy than the average person and that is how I was diagnosed with JHS! I have been prescribed stronger painkillers and meds for my GI issues as well as being referred for physio. Thanks for reading and I can’t wait to meet you all

Sandy_123

Hi @loz_ have the painkillers helped in any way and is physio making anything better for you 

loz_

Hi @Sandy_123,

i’m not sure yet because I‘m not able to collect my new painkillers yet as my rheumatologist isn’t able to send the prescription across to my general doctor until Wednesday and I need to get in contact with my physio about some more exercises but I will post when I know incase it can help others. Thanks for your reply

Alex_Alumni

Hello and welcome @loz_ and thanks for sharing your story Hopefully the painkillers will help when you do get them!

How does it feel now with this new diagnosis?

loz_

Hey @Alex_Scope,

thank you for the welcome I hope so, it’s not nice being in pain nearly all the time as generic painkillers don’t do anything for me.

It’s a massive relief to have a diagnosis after not know what was wrong and wondering if it was all in my head.

Alex_Alumni

That's good to hear, it's terrible what the mind does sometimes isn't it? 

If you'd like to have a proper look around, here's a few of the best places to get started:

• Recent discussions is where you'll find all the latest conversations our members are having
• The categories page shows all the different topics for discussion
• The virtual coffee lounge is a place to chat, get to know other members, and play games too

Enjoy your evening  

loz_

Thank you @Alex_Scope yes it is terrible. 

Thank you for the tips on helping me to get started, it’s much appreciated.
I hope you have a great evening, you are very kind