recently been diagnosed with Hypermobility Spectrum Disorder, any advice?

lalease

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

Pippa_Alumni

Hi @lalease, welcome to the community! It's great to have you here. 

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!

Weebles1703

I have Eds, so similar issues. Have you explored the hypermobility syndromes association website? It's very good. I believe they have groups around the country too. There are some good fb groups too but they're hit and miss  so have a look at a few to find a supportive one. 2 years may seem life a lifetime for diagnosis but I wanted to say well done because I know people who waited over 20 x

disabledkenny1

Hi Lalease I found this website for you I hope it heps http://hypermobility.org/hsdandme/

ClaireSaul

Hi @lalease

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

Weebles1703

Claire has given a much better answer but I would add that tens machines work for some people, as does good quality (but expensive) cbd oil (from a cannabis plant, not from hemp). It's totally legal in the UK. I went on a day long pain education session arranged by my local pain clinic. That was amazing so it may be worth asking for a referral to a pain clinic to discuss meds and other ways of dealing with pain. If you're anyway near Stanmore hospital, they offer very specialist care for hypermobility patients, though I haven't been there myself. The Ehlers Danlos society website is a good way to keep up with research on hypermobility issues. 

ClaireSaul

@Weebles1703 - do you use CBD?  I reviewed some for an American company, which I did find helped the soft tissue and joint pain if not the chronic nerve pain, but am keen to find a good British product.  I have a spinal cord stimulator (bit like an internal TENS for nerve root damage), but I agree that TENS can be very helpful.
Fab to meet a fellow zebra!! (And my answer is not better...different and prob too long!!)

Weebles1703

I tried the Holland and Barratt hemp-based cbd oil but it didn't touch my pain. I'm desperate to lower my morphine, but even though I found a UK supplier of the good stuff, it's put if my price range. Here is what I found https://www.healthrack.co.uk/cbd-1000mg-oil-dropper

moojooles

Hiya.
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

lalease

thankyou soooo much to everyone that has replied x I have to admit the relief of finally being diagnosed with something and knowing im not going mad has now been replaced with feeling like im on a rollercoaster ride that I cant get off. On the good days im up for doing what I can and showing HSD whos boss! on the bad days I want to crawl under a stone and not come out! I am under the chronic pain team, they were the ones that actually diagnosed me and so far the stretches they have given me for neck and shoulders do give some relief, just hard to do on the bad days x The pains in my lower back and legs/knee are bothering me a lot lately. The docters have tried me on various meds but they didn't agree with me, so its ibuprofen and a heat pad. I am 47 so really want to look at ways to help control the pain ...thankyou for all your advice I will start looking into some of the things mentioned love and support to all you zebras xxxx