Hypermobility:-just listen to me

[HMSjen]

At 10 I developed joint and back pain. I was diagnosed with school phobia but I loved my school. Nearly 30 years later I was diagnosed with Hypermobility and told it wouldn't affect me. How wrong:- it has affected nearly every system in my body. Like others I know, I was given several different diagnoses one for each system. It has been easier since being taken seriously to know that I have one diagnosis and not many. Systems affected include musculoskeletal, gut, heart, blood vessels, urinogenital tract and eyes. I'm not complaining just asking to be listened to- there is no cure but it would help to share experiences with others.

[Sally364]

It sounds like you have Ehlers Danlos syndrome rather than straightforward hypermobility. Have a look into that perhaps, it might mean Drs are more helpful although it can vary so much.

[HMSjen in reply to Sally364]

I'm told I have level 8 HM syndrome- not wheelchair bound (yet)

[Sally364 in reply to HMSjen]

It is odd that different consultants call things different names it's gotten into a crazy situation and makes it all the harder to feel what's what for each person with the same issues. From what I ve read to date, all the additional bodily system problems are better described under Ehlers Danlos, although the latest research seems to point into the direction of complete reclassification later this year which should unite all the specialists to "one" common title and all new subtypes. How long this will take to filter through, it's impossible to say. It shouldn't be the fight that there is. I'm fighting with sticks sometimes crutches but can see the future wheels tbh as well. 😕

[HMSjen in reply to Sally364]

I'm concerned for my 22 year old daughter in whom I see symptoms developing. I've talked to her doc about my concerns but he doesn't think it's relevant. I recently had to see a gynaecologist and,what joy, they immediately noted the HM saying how it frequently led to post partum haemorrhage which it did after each of my babies. The more I research the more I realise how much I have been affected. As I've said before, I'm not complaining but I do want others to be supported earlier in their lives and not written off as neurotic.

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Hi HMSjen, really sorry to hear what you're going through. You said you'd like to share your experiences with others, would you be interested in sharing your pain story in the Cloudy with a Chance of Pain newsletter? It can be really helpful for other people to know their not alone in experiencing chronic pain. If you're interested you can email me at [e-mail]

Thanks.

Rebecca - Project Support Officer, Cloudy with a Chance of Pain