Do you have EDS or hyper mobility syndrome - what are your symptoms?

[Strawberryteaforlunch]

I’ve had lots of issues for many, many years.
A few years back I came across hyper mobility syndrome and EDS and can not stop wondering if most of my issues could be down to this?
I have done the online Beighton test and even at 49 years old score highly (would have probably reached the maximum score when younger). I’m not sure how scientific or reliable this test is?

My symptoms are:-

I was born with double hip dysplasia (not sure if that has any relevance?), have always been very flexible and bendy but often painful and achy with it. I can contort my arms and legs into positions no one else I know can!

I have always suffered from lower back and pelvis pain (even when a young teen a shopping trip would give me a bad back).

I have always suffered from extreme tiredness

Have had very bad, daily digestive issues for 24+ years, these issues are getting worse (nothing found on tests and told its ‘just’ IBS).

I have clicking joints, my ankles wring over and I have hip, pelvis and lower back pain

I bruise easily

I also have TMJ disorder

My fingers, toes and knees click all the time.

My grandad, mum and I also have Raynaud’s syndrome (not sure if that’s connected?)

I have white papules (sp?) on the sides of my feet but not sure if this is something non suffers get too?

I believe other members of my family have or had this issues too. Both my mum and my grandad (her dad) had gut issues and their legs bent very far backwards when standing.
My mum has bad osteoporosis and is now bent over, her feet were so flat with fallen arches that her feet have grown into an awful shape. She has had bad varicose veins for years and still has issues. For as long as I remember my mum has been in pain.
We also have heart issues on my mums side of the family (not sure if this is connected?)

My 17 year old ds was also born with hip dysplasia and has had many years where one of his knees dislocates which causes horrendous pain until he clicks it back into position, his knees also bend back. Took him to a paediatrician when he was about 7 and they said there was nothing wrong with him.
Dd is 14 and currently being tested for PoTs which I believe can be connected to EDS, she also has to ‘click’ her joints every day (arms, wrists, back etc) in order to feel comfortable. Her GP said this is just a habitual thing that she has gotten into.

Anyhow, I am fed up feeling like crap and have done for decades. I am 49 and feel that I really want to get to the bottom of this before I’m 50.

Do you suffer from joint hyper mobility or EDS? What are your symptoms and have you any other conditions which are connected?

I’m trying to connect all the dots before I take this to my GP during my quick 10 min slot! (GP is always less than understanding and seems to always want to offer antidepressants for everything).

I was diagnosed with this when I was diagnosed with psoriatic arthritis this year. My rheumatologist told me I had PsA and then asked if I knew I also had EDS hypermobility type after examining me and I didn't. I don't even think I'd heard of it before. The only symptom I could tell was specifically that and not something I'd be putting down to other conditions like joint and muscle pain, tiredness etc but my joints felt very soft and mushy and that's exactly what the rheumatologist said about them. I don't feel hypermobile, I feel stiff as a bored but apparently my joints are very flexible. My hip will often feel like it comes out of its socket when I'm walking, it's very painful and a weird feeling. I also have very thin skin which is what the rheumatologist pointed out before telling me I have it. I also have psoriasis too. My skin breaks, reddens or bruises at the slightest knock. I wear a watch 24/7 and my skin has thinned really bad where I wear it, same as happened with my wedding rings.

I wasn't offered any treatment for it but have been given physio for PsA which the rheumatologist said could also help the EDS.

Hi
I'm hyper mobile and have daily aches and pains , have frequently bendy ankles ( one ankle bent funny once and the tendon snapped) .
I can bend my thumbs back without pain .

I have joints ' pop out' randomly, normally can get them back in myself although I have needed help once when my hip popped out partially ( it was very painful!)

I was diagnosed by a physiotherapist who did the beightons test with me (only scored 4).

I find it hard to sit upright and end up in a slumped position without realising a lot of time , and have always had achey wrists since childhood ( was diagnosed 9 years ago aged 21).

In a way it helped to be able to put a name to what was causing me pain . It's not easy when I have a bad day pain wise though , and I'm always exhausted .

Yes I do. The symptom list is long and unedifying.
Shortens can be related, yes.
So can POTS.
Aortic problems prevalent in some types of EDS. So are other types of ruptured membranes.

You have many similar symptoms to me and I have a formal diagnosis, as does my mum and my daughter.
The most important thing you can do is pace yourself. Managing fatigue is the key. Manage fatigue and you lessen the injuries. Pain management I have found acupuncture quite helpful.
I’ve been sent away from multiple hospital departments because there’s not a lot they can do. I recommend seeking treatment for the individual symptoms as they present rather than the umbrella of EDS, it’s been more successful for me.

Instead of shortens that should say Sjorgens, sorry!

I was diagnosed at 40 with a history similar to yours and bladder issues as well. You need to be referred to a rheumatologist for an official diagnosis.
My DD was symptomatic which triggered me pushing for my diagnosis.

@Strawberryteaforlunch we are literally exactly the same

Even the double hip dysplasia!

Mine was diagnosed after bladder emptying issues! X

Yes, I have hEDS, plus POTS & MCAS, often known as a Trifecta.

Email this link to your GP ahead of your appointment & list everything you have that's listed in there. It used to be hosted on the RCGP website, so they should know about it!

gptoolkit.ehlers-danlos.org/

A GP won't often diagnose and these days will be reluctant to refer you either. Unless you have one of the other EDS subtypes that is more severe & can be genetically tested.

Good luck x

I have hyper mobility and your symptoms are similar to mine.
Im also resistant to all local anaesthetic (including epidurals!) because of it!

Yes your family history sounds a lot like mine.

I and the majority of my siblings have clicky and subluxing joints, mostly wrists, shoulders, hips and ankles but my sister also does her ribs which is very painful and awkward. My sisters and I are 9 on the beinton scale, everyone else is between a 6 and 8.

My brothers have pots, my mum had hip dysplasia as an infant, my niece and nephew have a lot of bladder and bowel issues- ultrasounds showed they have the type where your organs are stretchy. My grandma and aunt had reynauds and her dad had marfan syndrome (not sure if that one is related). My aunt was a contortionist for 20 years - she used to show me how do do some of the positions and it did not take any practice to be able to do them. My mum could do the splits until her 50s when she started 'tightening up' she now has less issues.

I have severe headaches and am tired very easily, in my teens I used a wheelchair for several years and again in my 20s due to near constant dislocations of my hips and knees. I have had surgery to fuse my shoulder after four years of frequent dislocations. Still wasnt diagnosed until I was 22 and that caused a domino effect of my siblings, mum, and nieces and nephew also getting diagnosises as we had genetic testing done. One of my neices was diagnosed with "a connective tissue disorder' but they couldn't call it eds despite our family history.

Only one of my children currently is showing signs of the hypermobility, they have had a few minor subluxations and have been clicky and extra flexible since birth. with my siblings, we mostly started having problems around puberty. One of my siblings has no signs of eds- same as my dads side of the family.
Its a annoying and very wide reaching cindition with so many weird symptoms and consequences

I have EDS and I have every symptom you've mentioned, plus a smorgasbord of others.

It's a horrible condition, especially now my joints are especially loose and my shoulder can pop out when I turn over in bed I'm awaiting an op on both my hips due to there dislocating. An absolute bloody, painful nightmare.

My symptoms;

• extremely loose, stretchy, thin skin.
• raynauds
• joint subluxations
• joint dislocations
• fatigue
• extremely bendy
• constant joint pain
• clicking in joints
• bruising
• grinding in small and large joints
• pale skin

I could go on and on but I can't bring them all to mind right now.

I had to get a rheumatology referral to be diagnosed, the GP won't do it - and I think the consultant only tested/diagnosed because when I pushed myself on to the bed for an examination, I was clicking like a glow stick and my shoulder clunked out. They don't like diagnosing unless they are absolutely sure, so you go through all manner of tests before they do.

I have secondary conditions too like IBS, rheumatoid and osteoarthritis and ankylosing spondylitis - basically I am falling to bits I'm only young too.

There's no really treatment per say; medication to control symptoms and pain, physiotherapy to work on joints and muscle, braces and splints to keep joints in place (if you want them, I find them more a hindrance tbh..)

Push your GP for a rheumatology referral, that's the best place to start.

I was diagnosed at 40 after a lifetime of bowel issues, severe reflux and hip and back pain. My bladder doesn't empty properly either.
My DD is awaiting diagnosis as she seems to be having more problems than I did at her age

Mine was diagnosed by a rheumatologist too. I’ve had lots of sprains and subluxations over the years, tire easily, brain fog, anxiety, IBS type issues, lumpy feet, crowded teeth, bruise easily. There will be more too, that I’ve forgotten about.

I’ve just realised that, for some reason, I never replied to any of these! I am sorry and if any of you see this, thank you so much for your replies.
I am very much still stuck at square one. Still experiencing the issues which are probably worse now. I am
not getting very far with the GPs that I’ve seen so far, they don’t seem to take this seriously.
I am considering seeing a rheumatologist privately even though I can not afford to buy atm but am quite desperate.
I am so very fed up with the pain, extreme tiredness, digestive issues etc, they are really controlling my life right now.

Sorry to hear this op.
I had the experience of being on a waiting list for rheumatology but they just took me off it as the list was too long.

My lovely GP instead refered me for x rays on hips, physio for hypermobiilty assessment, colo rectal for colonosopy and also pelvic physio. She also offered a pain clinic referral.
Not sure if any of those would be useful to you.

Thank you CottonSock. I should most probably have a check on my hips, they are very achy recently and the right one often feels like it may ‘pop’ out. I used to have to see the specialist every year after I was born with the hip dysplasia, he always said I should keep a check on my hips once I hit my 40’s.
I am due to have a colonoscopy this coming Saturday (dreading it) and will ask about physio and especially the pelvic physio as I do wonder if my digestive issues and gynae problems have some kind of pelvic floor issues attached?

Does sound similar to DD and DDis who were both dxed by genetic test.

I was just chuckling at a thread in how to "age well" by doing "lots of gentle movements" and "staying engaged with the community" and thinking to myself darkly that none of that helps when you've got the wrong genes.

It's worth getting diagnosed though, if you have something like that.

Exactly JeandeServiette my poor mum is 80 and bent over with osteoporosis (and sadly now also suffers from Alzheimer’s). I can not remember a time when she wasn’t always in pain yet she ate well, never smoked or drank and walked every day with the dogs, she also did keep fit regularly yet is in pain virtually every day and has been for decades.
I know people who drink, eat crap etc yet are as strong as an ox and never seem to have an off day. Genetics most definitely play a big part.
Can I ask which genetic testing your family did? Was it via the NHS or privately?

NHS. It seems to be the first line here.

JeandeServiette I’ll ask my GP about it.

I’ve never formally been diagnosed, but a physio and a GP have both mentioned they think I’m hyper mobile. Many in my family also have the same problems, cousins, aunts and a grandparent. We are all very bendy, easily dislocated joints, reflux issues, bad back and joint pain.

I was advised to do gentle, now impact exercise. Cardio exercise I was recommended is the cross trainer, rowing machine, weight training at a lower weight, swimming and yoga or Pilates (as long as you take care not to hyper extend or sublux any joints by very carefully keeping the movements and shapes correct). I can definitely feel it when I haven’t been exercising enough, it keeps my muscles stronger to support the tendons and ligaments and I have less pain.

Low impact exercise not now impact exercise.

It sounds like we potentially have similar issues op.
I dreaded the colonoscopy but it was fine with the sedation. I found it quite interesting.

it certainly sounds like some sort of Connective Tissue Disorder, Marian/Ehlers Danlos are two possibilities that come to mind, especially when you mention the heart aspect of things.
I would ask your GP to refer you for a full array genetic test, it might be done locally but if not Guys in London would do this.
If you suspect any heart issues I’d also ask for a referral to rule that out too.

I clicked on this thread to see if anaesthetic resistance was mentioned. I'm starting to wonder if I have EDS because alongside some of the other symptoms I have had horrendous experiences with anaesthetic resistance at the dentist, and some slightly less awful experiences during minor surgery, and so often when I try to read up on it EDS is mentioned. Planning to bring it up with my GP.

Sorry OP, that wasn't very helpful for you 😁 but I hope you get some answers!

I have POTS (diagnosed by Dr Gall) and likely MCAS - also endometriosis/ adenomyosis which are more likely with EDS I believe. Also bladder and other allergy issues caused by MCAS. Not diagnosed EDS though x good luck x