hi I am new here :)

hi I was just wondering I was diagnosed with hypermobility syndrome at 17 but have recently been re-diagnosed with Ehlers-Danlos syndrome, I had never heard of it before and it hasn't been really explained to me properly as of yet but aren't the same thing basically

[Boombiddy]

Hiya Jen,

Hypermobility Syndrome and Ehlers Danlos III (Hypermobility type) are considered identical by the experts.

Many people prefer to use the Ehlers Danlos title.

This is because many old-fashioned rheumatologists think of Hypermobility Syndrome as just someone being a bit too bendy, and because of this, they don't treat them properly.

So with the Ehlers Danlos label your symptoms are taken more seriously.

You didn't say which Ehlers Danlos you have been diagnosed with so I assumed Hypermobility EDS, which fits your first diagnosis and is the most common, but there are other types.

When you get your copy of the rheumatologist's clinic letter you will maybe have more clarity as hopefully they will spell things out better.

Meanwhile you might find it helpful to look at Ehlers Danlos UK, or ring them up and talk to them.

One thing I found immensely helpful is Brad Tinkle's "Joint Hypermobility Handbook", it covers every system of the body, from joints to gut, cardio, nervous system, and much more, and is very readable and empowering. It helps you makes sense of it all, and helps you explain it to doctors when you need to.

Dr. Tinkle is one of the world experts on the condition yet he is so down to earth and is very caring. I've found his suggestions and recommendation really supportive and useful. I cannot recommend this highly enough.

I think you will be glad of your 're-labelling' in the long run.

Best wishes from Boombiddy.

[Hidden in reply to Boombiddy]

hi thankyou for this I have just ordered the book, so that should make a really interesting read, I hope I do get some extra help would be nice not having to fight for it, they did sent me to Stanmore orthopaedics hospital so I could learn to relocate my joints and manage as best I can from home but since then it feels like I have just be left to deal with it myself which only seems to get harder x

[leapingmonkey]

Hi Jen, I've just turned 60 & have suffered chronic pain for over 30 years, I've been dismissed as suffering from PMT (now called PMS), eventually I reached an age where this became the Perimenopause, then the actual menopause! After all, that covers the majority of women for most of their life! One doctor told me I was depressed & bringing it on myself. Now after all these years, gradually I'm learning that I have 'some form of inflammatory arthritis', as well as cervical spondylosis, Fybromyalgia & only a few days ago Hypermobility (how come this was never picked up before) Anyway, my point is (sadly) I've learned that helping oneself is the only way forward, I've exercised all my life, aerobics, step, yoga etc (name it, I've done it) taking up running throughout my 40's & 50's, cycling (to postpone knee replacement) & hiking/climbing. I've regularly taken pain relief prior to any exercise, which doesn't get rid of the pain, just takes the edge off enough to get me through it. Most of my medical diagnosis & treatment, which does bring relief, has come from a chiropractor, unfortunately not available on the NHS, one of the hardest things to take in was that I had to 'learn to manage my condition', which has helped, though I still live in hope of being pain free. As an Aromatherapist & Reflexologist I see many people who are desperately seeking relief from chronic pain, fatigue etc, it's important that you look after yourself, find what works for you, put yourself & your wellbeing first. Be persistent with your GP, (I wish I had been when I was younger) & good luck 😊

[Hidden in reply to leapingmonkey]

I was always told hypermobility was rare which is why I find myself explaining it to every doctor who needs to treat me this is why they told me it took so long to be diagnosed.

it is funny they put my condition down to been a attention seeking teenager because when my joints would dislocate muscular spazms kicked in pulling my joints back into place so there was no evidence.

it was not until my tendons ligaments and muscles stretched so my that they couldn't pull it back in anymore they believed I was suffering with anything worse than a sprain.

the doctors told me to stop all my old sports and go to physiotherapy and hydrotherapy which has eventually stopped so i was told to only swim and go for walks. (which i find very boring in all honesty haha)

what would you recommend for me to try which isn't to painful but can be fun doing.

[notlob in reply to Hidden]

Hi,

Sorry you are suffering, but nice to hear from you anyway!

I started having problems in my teens and was also accused of being a "silly teenager" by doctors etc. but it was the 1970's so I suppose I should have expected nothing better. It's very frustrating when nobody believes you. I am now in my fifties and was eventually diagnosed last year with EDS hypermobility type and orthostatic intolerance which basically explained the previous forty years!

I revisited the rheumatologist last week and she advised me to do Pilates to keep my core muscles from getting "decommissioned." There appear to be lots of Pilates groups out there but I would think you need to make sure the instructor is aware of and experienced in your condition. I'm not a very sociable person really (grumpy old woman) so I've ordered a Pilates reformer which I can use at home. It looks a bit like an instrument of torture but I think it's just what I need. Obviously if you're young and not grumpy a group session might be more fun for you.

Never give up trying to get answers - you usually have to do this yourself as the medical profession mostly seem to be very ignorant of EDS.

Good luck!

[Boombiddy in reply to notlob]

Hiya Jen,

It is brilliant, brilliant news that you have been referred to Stanmore.

They are brilliant, and they care for the whole person. You will get great help and learn to live life well with this condition, not merely manage.

If you also have problems with POTS, faints, fatigue, chronic pain, gut or any of those things they will also be very helpful with these, and more.

It sounds like you are on you way to getting proper help. I am so happy for you!

(Be prepared for a wait though...)

As notlob says, Pilates is one of the recommended activities for people with a Hypermobility Syndrome. The other is swimming.

A note of caution though: anyone with this condition needs Physio led Pilates and the Physio needs to know about the condition.

Because people with this syndrome generally have poor proprioception (proprioception is your positional sense), you need to be in a class or even one to one with a Physio, so that they can see when eg. your arm/leg isn't quite in the position you think it is, and help with that, and that way you will get the benefit of the exercise, not injure, and get to develop your proprioception a bit.

If you say "I have hypermobility" you are saying you have ordinary everyday healthy double-jointedness.

You need to be clear that you have Hypermobility Syndrome/Ehlers Danlos III.

I would love to know, who diagnosed and referred you?

Best wishes from B