I’m losing my ability to walk

[Worried1987]

I don’t know if anyone has been in a similar situation to me. I was born with dislocated hips and have hypermobility syndrome so I have never been physically brilliant but my physical abilities have gone down hill. I have fallen down the stairs twice in the last 6 months and when I fall down it takes me a long time to recover again because my joints are weaker and more likely to dislocate. I don’t really know what to do. My children are little and need me a lot.

OP would you consider searching on Facebook for a supportive group?

Ive had two unusual problems that I’ve found tremendous support and knowledge for through Facebook groups. Often many Americans are in there and their advances in medical research are often years ahead of us in the U.K.

Id go and ask for basic bloods, like vitamin D, renal function, hormones etc.

this is about hormones https://www.hypermobility.org/hormones-and-hypermobility

we are all different though and it may not apply to you

That is a really helpful article. I think hormones definitely play a part in my joint problems.

It would be brilliant if I could have any specialist physio. I have looked online and my local hospital does hydrotherapy classes for people with rheumatology conditions which would be amazing. We have recently moved and in my old area they had nothing like that.

@Worried1987 go to your GP and ask for hormone tests and take the article and highlight the really important bits. You have to push to get anything out of the nhs these days. How old are you op? Peri menopause starts years in advance. Your hormone levels are probably dropping and that won’t be helping at all.

You could ask about hydrotherapy then too. Explain you’ve got young children and want to avoid being in a wheelchair

I don’t know how old your baby is but relaxin stays in your body for a year after giving birth. I am hypermobile (but don’t have EDS), and I was completely broken for nearly a year after giving birth. I had 1:1 Pilates classes and they have absolutely changed my life. It is so important to strengthen your muscles to support your joints.