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recently been diagnosed with Hypermobility Spectrum Disorder, any advice?

Hi , I'm a newbie on here xx I have just very recently been diagnosed with Hypermobility Spectrum Disorder. It's a difficult illness to understand and come to terms with . If there is anyone on this forum with HSD I would love to hear of how you cope , anything that helps with the daily aches and pains . Like I say just diagnosed , it's taken 2 years back and forth to the doctors so although it's great to now know what causes all my problems , I now need to find ways to help myself live with this. Thanks for any advice x
Replies
I've moved your post into our chronic pain discussions, where hopefully more of the community will be able to see it and get in touch with their advice. I'm also tagging in @clairethehair42, @Veronica and @Kaye who have all discussed hypermobility on the community in the past.
Hope this helps, and I hope today is as kind as possible to you!
I have EDS and as Weebles says, they are on the same spectrum. I wasn't formerly diagnosed until my early 40s, but have had problems all my life - however it was easier getting my teenage daughter diagnosed. I think that there seems to be more recognition out there now -but still not enough amongst medical staff (I include physio, OT etc in this) and once of the biggest problems is it can affect multiple body systems requiring referrals to many consultants. But...there is lots of help and support out here - I belong to a couple of fb groups, but as Weebles says you might need to look around for the right one for you (some can feel a bit negative, or it may be that you feel out of your depth as others talk about their problems)!
You have the Hypermobility website above (a UK charity), the EDS UK site is also helpful and there are support groups held nationwide:
https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/
There are a lot of us who blog about life with hypermobility - myself included - and some fantastic vloggers too. Can I ask your age range?
For some practical day to day tips: keep yourself as "conditioned" and fit as possible - immobility can be just as damaging as overdoing it. A light strengthening regime is usually recommended with resistance work (using resistance bands etc); pilates (less likely to overextend than with yoga - but a good yoga teacher should be able to teach you to work without overstretching). Pacing yourself throughout the day - I am hopeless at this, but it is important, along with rest & sleep. I am never without a heat pad for aches and pains along with splints, braces,belts etc - strapping can also be very helpful, but you need to be taught how to do this effectively by a physio. These can help with dislocations too (I have numerous joints out a day!) Drugs tend to be very personal as to what helps with different types of pain. Mindfulness and meditation can also be really helpful. To be honest many people use a combination of therapies/
I can recommend this book: https://www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disord
I really don't want to overload you - but please come back to me to chat more! (I have been in the midst of a huge flare myself so haven't been here for a while, but will always come back to you!)
Claire
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Fab to meet a fellow zebra!! (And my answer is not better...different and prob too long!!)
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
I also have EDS hypermobility type, which is the same thing.
The above advice says it all really. I just wanted to add that it's not just the symptoms of hypermobility you need to watch out for....but also the long list of comorbid conditions such as fibromyalgia, POTs, MCAS, gastroparesis etc.
So don't be afraid to see your GP if you develop any weird symptoms. Whatever it may be, there is probably a way to treat it, so don't feel you have to suffer in silence. Yes....this syndrome isn't widely known about, even within the medical prefession, so you may hit a few brick walls along the way....but due to ever increasing awareness, more and more doctors are understanding the complexity of this condition.
And as far as painkillers are concerned, be mindful as to what you're taking. You don't want to build up a tolerance too quickly. Every so often, try to go longer without certain pain meds...to give your body a break from them. You'll find you respond better when you start taking them again.
Join FB groups....you are not alone!! Xx