Does this sound like Ehlers-Danlos syndrome?

[Qwertyskew]

Just want to chat because I think I've found an answer to why I feel so crap and wondering if anyone with any experience or knowledge has any thoughts.

I have the following symptoms:

Hypermobility (not been told this by a medical professional, but by looking up on internet - I sit with legs in W shape, can "pray" behind my back, touch my forearm with my thumb, bend my toes at right angles to my feet and other things that apparently only people with hypermobility can do)

Pain in quite a few of my joints, and frequently having to click them back into place.

Feeling tired and achy all the time.

Losing balance quite frequently.

Feeling dizzy quite often, especially after standing up.

Stomach problems.

I know no one can could possibly diagnose me over the internet, but even if you think this could be EDS, is there any point in seeing a doctor? Is there anything they can do other than diagnose, tell me to take painkillers and send me on my way?

If you think it is worth seeing a doctor should I bring up the possibility of EDS myself, or will the GP just roll their eyes and think 'I'll do the diagnosing round here, thank you very much.'

I'm worried I'll look like a hypochondriac who wants the "cool" health condition (I don't think I'm a hypochondriac, the last time I saw my GP was about 6 years ago with very obvious massively swollen neck glands - but what if I am and just don't realise it?) or what if the GP thinks I'm just lazy and trying to find an excuse to be signed off work (I really don't want to be signed off work - I need the money.)

Anyway, thanks for reading, sorry I got a bit rambly and I'll be grateful for anyone's thoughts and opinions.

With those symptoms it could well be.

I was diagnosed With EDS 3 years ago ( in my mid 50’s ) after DD was diagnosed. Looking back it was really obvious from as far back as toddler age that I has it but of course no one was aware of it then. Or even when DD started to show signs.

Over the years I’ve known something was wrong but no one tied up the many and varied symptoms ranging from weird fatty lumps in my heels, hard ballbearing nodules on my elbows, constant ankle sprains, torn ligaments, tendonitis, exhaustion, thumb, sacro iliac joint and shoulder partially dislocating every few weeks, resistance to painkillers and local anaesthetic, irritable bowel syndrome etc etc.

I’m relieved to have a diagnosis even though there’s not much to be done. I don’t feel like a hypochondriac, I can tell the dentist to go all out with anaesthetics and doctors take the pain from sprains, tendonitis more seriously. It also confirmed DDs diagnosis and explains much about my late DM and Grandma as well as one of my DBs.

Physio, hydrotherapy, occupational therapy can all help some symptoms and I have a selection of wrist and ankle braces for when things feel very wobbly. I think it’s useful to have it on your medical records too as it can affect so many different body parts internal and external.

I'm watching this with interest. I suspect I have EDS too after years of problems. I've just pushed the GP for a referral after yet another joint problem- this time a frozen shoulder. I'm in pain and exhausted all the time. Sometimes it's really not a life.

My DS (now 21) was diagnosed with Hypermobility Syndrome (as it used to be called) as he presented with a lot of pain & fatigue too. Then Rheumy physios at Gt Ormond St said he'd definitely hEDS - he had a few 2-week intensive physio courses, we did pain management. He was also under GOSH for bilateral hip dysplasia & has had tons of surgery. His orthopaedic surgeon wasn't convinced hEDS dx was the full picture, referred him to genetics & had muscle, skin & scar tissue samples analysed and found he also had a very rare form of muscular dystrophy.

He's now under the neuromuscular team at National Neurology hospital - he's seeing them tomorrow for physio rehab & orthotics. It took years to get any of the diagnoses - even the hip dysplasia wasn't dx until he was 6 months old, despite me insisting something was wrong. So it's been a long haul.

I would say - as others have said - read up on EDS & HMS checklists (check Beighton score, etc) & see GP from an informed position. They can't dx - it would need a rheumatology referral, and tbh depending on where you live, not even all rheumys are specialists in EDS. There had also been a lot of criticism of over-diagnosing EDS, so there is a reticence. There is also (as PP have mentioned) the attitude that a dx changes nothing, BUT, in my experience with my DS, it can unlock physio, OT, pain management.

If it were me, I would push GP for a referral (but I would also look up your local rheumatology clinics to see who consults - we were lucky to meet Prof Rodney Grahame who is a renowned specialist (he now runs a specific clinic in London www.ehlers-danlos.org/news/new-london-based-rheumatology-and-hypermobility-clinic-for-adults-and-children/ ) There used to be a list of rheumatology clinics who specialises in EDS / HMS. If I find it, I'll post it.

www.edhs.info/centres-for-patient-referral

I really believe a diagnosis is helpful and wouldnt want other people to finally get diagnosed in their mid-50s like I was. With proper joint care and management it might be possible to minimise the damage that can be done to joints as well as making sure you get adequate pain relief a s anaesthetic. There are exercises best avoided such as certain types of yoga, gymnastics, ballet and it is good for schools to be aware if a child is prone to bleeding or easily damaged skin. I was and am covered in unexplained bruises and opening foil backed tablets cuts my fingers. I get huge red raised patches from crossing one leg over the other or resting my arm on a table. Stuff like this can have teachers reaching for their safeguarding info if they don’t know what the cause is. I would fall asleep in the middle of lessons which is also something that would raise red flags. For future generations of a family it’s good to have it on record so that earlier diagnosis can be made

Sounds like it could be EDS, OP. I think it's worth having a diagnosis because it will help you and anyone involved in your care understand what precautions to take.

One PP mentioned Pilates- that is a good idea. My Pilates instructor has EDS and took it up to help with the symptoms.

So glad I found this thread, I was diagnosed with fibromyalgia over 3 years ago first by a go then confirmed by a rheumatologist who I went to privately (but found out later he didn't have great reviews) I have done everything that has been recommended for fibromyalgia but just seem to be deteriorating. I can barely do anything now without been in constant pain. I think I'm hypermobile too. I can do the same things you can and scored 8 out of 9 in the Beighton test. I seem to be in a constant flare now. I'm actually going to another rhuemotogist tomorrow after a 2 year wait, so will ask him.

Voila so sorry you’re suffering so much pain and have such a long wait to see a rheumatologist. I was misdiagnosed with fibromyalgia. I never felt it was the right diagnosis. I hope the appointment is helpful and definitely mention possible EDS. When I told my GP I thought I had it and my DD had been diagnosed with EDS he referred me to a rheumatologist at our hospital trust who agreed it sounded like that’s what I had . She referred me on to DDs hospital as they are a national centre for EDS .

Thanks Bjork, I will mention it, like op I didn't want to sound like a hypochondriac but the last year has been awful. Before I would have good and bad periods and was able to do stuff with pacing. Now even going out to my local shopping centre for an hour leaves me in bits for the rest of the day. I live in Ireland, our waiting lists are horrendous here. I actually was so desperate i was going to go private again but thankfully the appointment came in the door the same week. I just don't know how well known eds is here. Hope you and your dd are doing well now.

I’m hoping that there is more awareness about EDS now. I’d hope they would know enough to know if they can make a diagnosis if if they’d need to refer you on ( hope they don’t have to though ). After your mega wait I really hope they can help you. It’s wretched when your waiting and in pain.

DD and I are okayish thanks. Good luck for tomorrow.

Thanks Bjork