Hypermobility/Ehlers Danlos Syndrome

[GoogleDoctor]

DD and I recently ended up at a podiatrist, who has assessed both of us as hypermobile (palms on the floor with knees straight, thumb back to wrist, etc). I've thought for years I was flat-footed, but was shown that I wasn't - it's my ankle joints being loose and slumping inwards that gives that impression.

The podiatrist then demonstrated how dodgy our hips, knees and ankles are, and how much the issue is affecting our postures. We're currently in the process of getting orthotics to try and correct some of the issues and reduce pain.

In the meantime, DD is also being assessed by the GP for very heavy periods. I suffered the same issue with short cycles and heavy blood loss, but with no obvious cause (fibroids, etc). I ended up having an endo ablation which didn't stop my periods, but has brought them back to manageable levels.

On one occasion I asked the GP whether there might be any connection between the two issues. And, because of the apparent genetic inheritance of the conditions, I wondered about possible Ehlers Danlos Syndrome (EDS).

However, I was cut off and bluntly told no. There are other things in my history that I thought might be related, but I didn't get chance to mention them. Honestly, I was a bit stung from being shot down so quickly and ushered on my way.

My joints pop and snap pretty much every time I move, and they're getting more painful as I get older. I've discussed with my DH and some of the pain I consider 'normal' apparently isn't normal at all. Doesn't everyone's feet and ankles hurt when they jump, and the hand and wrist hurt as they write?

I'm clumsy, I never seem to know where my body parts are so bash into door frames, door handles, tables and similar. I then bruise very easily - my thighs, calves and wrists are always colourful! I frequently get bruises that I have no idea where they came form.

I tend to be fatigued a lot, which gets dismissed as anaemia and/or being a working Mum. Constipation has always been normal for me, no matter how much fibre I eat or lactulose I drink. I heal slowly, but maybe I'm just getting old. (Late 30s.) My skin seems soft and youthful, but perhaps that's just luck or wishful thinking!

I give birth ridiculously quickly: both times it was under 4 hours from the first contraction. I went from being told I was only 2cm dilated to holding a baby in a matter of minutes. I've also been diagnosed with Reynaud's Syndrome.

However I don't seem to have dislocations. Certainly not the 'arm hanging out of its socket' type, but who knows what goes on in my joints when they go 'pop!' as I move. DD has also not had any dislocations, to my knowledge.

Does any of this sound like EDS, for those who know of the condition? Or does the lack of dislocations mean that is definitely not the issue?

Should I be pushing harder for a GP to look at the whole picture? Or is the doctor right to not even consider it and I'm just wasting their time? i.e. The issues are completely unrelated, I'm old, we're just a bit bendy, and I should step away from Dr. Google.

[PaperMonster]

@Sooverthemill. That’s like reading about myself when I was younger. I was just told it was normal in my teens/early twenties. By the time I was in my thirties I’d had a number of incidences where I’d been taken to A&E by colleagues in a variety of workplaces. I remember my sense of smell being heightened and having collapsed at one place, the First Aid lady was summonsed and she smelled of coffee and I was pushing at her face to get her away from me (I was a temp - must’ve been good cos they didn’t get rid of me after that incident!!) I was diagnosed with False Labour Syndrome and told it was because I hadn’t had a baby. In my 40s they took a different turn. Hard to describe but pain diminished and on day one, it was like a switch being turned on/off in my head and I sort of had out of body experiences where I was looking down on myself, but I couldn’t function properly. It was so scary. I’m now on a continuous pill to stop me having periods. I had a number of miscarriages. I could barely walk from week 6 of my only successful pregnancy.

Thank you ladies for sharing your experiences. I’m actually feeling a little emotional now.

[Sooverthemill]

@PaperMonster I'm so sorry you suffered too. I had terrible terrible periods and a long period of unexplained infertility ( 1 miscarriage age 32, 1 live baby age 41 ( DD but prem) and a MC age 42). I had a cyst removed from my ovary age 28 and was told by surgeon I had an very large number of adhesions which now I think was endometriosis tissue ( is that right?). I used to faint with my period and throw up. Bled for 10 days. Agonising pain. All over whole body. gastro issues. But as each member of my family ( I am one of 4 sisters) and my mum were the same I thought it was normal. I think I had endometriosis too.

[Sooverthemill]

@PaperMonster I've also been to A&E and was utterly scoffed at by junior docs and gynaecologists and was told it was normal. Funnily enough I am not keen on gynaecologists

[someonelockthefridgealready]

I was diagnosed with EDS as a teenager then later as POTS, although I got no more help than six physio appointments and a dire warning from the rheumatologist how bad my future was looking (still have nightmares about that one) ... Anyway, your description sounds similar to mine.

On dislocations, I "only" have had three dislocations that I knew I needed hospital for to put them back in (finger, knee and shoulder) and all of those were in my 30s, but I do have subluxations. I did not realise what they were, but one summer, one of my knees cracked (pretty regular) and then I kept getting a really awkward pinching sensation if I set my foot down a certain way and sometimes turning over in bed. But that kind of thing happens to me all the time.

Eventually my (then new) DP persuaded me to go to the doctor, who sent me to hospital and I ended up wearing a full-leg brace for two months until the swelling went down and the knee surgeon could "put it back in".

That has been happening all my life, but I had no idea it didn't happen to other people. I experience it as a vague "something not being in the right place" and yes, it can be painful, but if you have EDS, when are you not in pain? So it doesn't necessarily stand out.

[someonelockthefridgealready]

Oh and the majority of those suffering from EDS and particularly hEDS (I think that last one is almost 90 per cent) are women. And that absolutely has an effect on how seriously the medical professionals take it. And when you add in endo ... well.

I've been dismissed by medical professionals so often I dismiss and undermine myself. Be prepared to fight.

[Namechange600]

Just to add details of consultants who are amazing and take their patients very seriously- Dr Nick Gall for POTS and Dr Shaheen Khazali for endometriosis

[Becca19962014]

I was in a&e couple of years ago for a blood test and the sodding dr dislocated my shoulder taking bloods. How? Because he kept twisting my arm whilst I kept begging him to stop because he was hurting me - his response? I was being silly, as the joint will stop, EDS never hurts that's the good bit about it. Even after the almighty crack he tried to keep going - then it really had stopped. I thought he was going to faint when I cracked it back in. I was black and blue for weeks. Silly man.

I'd like a few minutes alone with the bloke who put EDS into those medical manuals "bit bendy and doesn't hurt". Pillock.

[GoogleDoctor]

Well, a few new developments. I saw the podiatrist yesterday and asked about EDS. Turns out they know a lot about EDS, and they stated I have hEDS, as does DD. So that answers that question!

On the other hand, I called the GP about the blood test results for DD and the response was that they're normal, so no further action required - i.e. they won't do anything about her heavy periods.

I got the impression they weren't even going to contact me with the results, if I hadn't chased them myself.

I guess at this point we'll work through the stuff we're having done with the podiatrist, keep monitoring DD and take notes to prove she's not going to 'grow out of it' as the GP stated, and then in a few months try again with a different GP!

[painting2014]

Glad you have managed to get a hEDS diagnosis.

Definitely keep persisting with a different GP.

I am being investigated for POTS by Dr Gall at Kings and I had surgery for endometriosis and adenomyosis by Mr Khazali so can also personally recommend them like a previous person above. Dr Gall said endometriosis and hypermobility often come together.

Dr Gall thinks hypermobility is likely for me and I believe it's in my family. Last year my 9 year old son was seen by a paediatric rheumatologist (leg pains etc) and they said he wasn't hypermobile which I'm not convinced about at all.

[PatsyStone39]

Hi Op, I have a mild EDS. No dislocations here at all, although i do have TMJ and i have to be careful with my right jaw joint if i'm eating something ridiculously large, like a baguette.

My skin is very like yours. I'm almost 40 and it's a bit too good for my age. I'm sure it will catch up with me though! I also get "balloon skin" - you know that velvety/static feeling when you rub a balloon. Apparently that can be another symptom.

I birth very fast, also. 4 hours? They thought i haemorrhaged but it wasn't, it was my placenta bursting! The EDS caused to have SPD badly when I was pregnant, I'm not sure if you suffered with this, too?

My joints are knackered. I used to run but after about 15 minutes my knees now give in. Elbows ache if I try to do weights, my thumb joints in winter are agony.

I also have terrible teeth. I've had major problems since i was little, and i've been told this can be attributed to EDS.

Heavy periods, yes, but I also have PCOS, so not sure if this is the EDS or not.

I don''t have POTS or any of the more severe symptoms, thankfully! And I think it's tooo early to say if my DS will suffer, but looking back, I think my Mum may have had it and not diagnosed.

[NuclearDH]

Just be aware your GP might not take any notice of the podiatrist’s diagnosis so official records may not be updated.

[BitchIAmFromChicago]

My eyes are wide open reading this! I’ve had popping jaw, hips and elbows since forever and I’ve had two elbow dislocations. I’m 35, regularly get id’d and gave birth within two hours. I’ve just tried the thumb to wrist test and did it no problem! I’m amazed!

[AmberItsACertainty]

@PaperMonster
In my 40s they took a different turn. Hard to describe but pain diminished and on day one, it was like a switch being turned on/off in my head and I sort of had out of body experiences where I was looking down on myself, but I couldn’t function properly. It was so scary

Look up "depersonalisation" it's a dissociative symptom. I get it in response to severe pain too. It's the brain's coping mechanism. Switches off to enable you to cope. That's why the pain 'reduces', because you can no longer feel it.

[ChristinaXYZ]

Your joints and pain sound just like mine. I am really sorry you have this too. when I got my hypermobility diagnosis I wanted to rule out EDS. My GP referred me to the EDs service at Sheffield (in Children's hospital not just for children though) and I went and I don't have EDS. I notice than it now says referral by consultant only. Ask for a second opinion from another rheumatologist and see if he or she will refer you. sheffieldchildrens.nhs.uk/services/clinical-genetics/ehlers-danlos-syndrome/ .

Another thing that really helped was SIRPA - you can pay for a online consultation but there is lots of free stuff on her website and the book is really helpful. It is available via a pain clinic in some areas. You could ask your GP to refer you to a pain clinic too (some are much better than others). NB SIRPA is a mental health based approach - it is not saying it is in your head, but rather your mental health can mean that your pain threshold / nerves are on high alert meaning your hurt more than other for the same issue. I was very skeptical but it helped enormously. The SIRPA book is ISBN 1910077755

[PaperMonster]

@AmberItsACertainty thank you, I shall do. I recall the gynae wanting to send me to psych but I just needed whatever hormone was causing this to go do one, hence I’m on the pill (in my 50s with no idea if I’m menopausal yet!!)

[NuclearDH]

Dd has been diagnosed with depersonalisation/disassociated disorder. I didn’t realise it could be due to pain. The GP gave the impression they thought it was due to ptsd due to a traumatic event.

Problem is now when she’s back and forth to the drs with physical issues it’s all put down to mental health and stress. She’s sure it isn’t due to stress.

[mamakoukla]

This thread is an eye opener. General hypermobility across all of the tested parts in the Brighton test, scoring well above age requirements. Have had severe periods to the point of passing out from the pain and extremely heavy (cannot describe how grateful I am this has reduced with age), gave birth in under two hours, tend to end up causing joint problems if I am not careful. Easily hyperextend, no pain at the time but afterwards as muscles, tendons and ligaments start to protest. I have started to attend an exercise class run by an athletic therapist to help rebuild muscle to protect my joints, especially problem areas of the shoulders and hands. Very clicky joints, especially ankles and feet - crack away when I first get out of bed, sometimes it feels like the whole foot! On and off gut problems, largely managed by diet now. So there might be a medical basis for this then?

[mamakoukla]

Excess pain and I pass out; was worried it would happen during labour

[PaperMonster]

I had a bloomin long labour! But it wasn’t as painful as my periods used to be.

[Sooverthemill]

@mamakoukla yes! Eds

[mamakoukla]

Yes, @PaperMonster - labour was easier than a period and over sooner!

@Sooverthemill reading through lists - things like stretch marks at puberty on my upper and inner thighs. It’s a bit shocking

[PaperMonster]

@mamakoukla - everyone thinks I’m odd when I say labour was easier than my periods! I was induced two weeks early due to GD and also because I was just in the most ridiculous amount of pain with my pelvis. I ended up having a non-emergency, emergency c-section. I guess it would have been interesting to see how my body reacted without the interventions.

[mamakoukla]

@PaperMonster - hmmm probably a coincidence but I also had GD

[Twilightstarbright]

I'm a diagnosed hEDS/POTS sufferer. Diagnosed shortly after having DS after a horrific pregnancy but the signs were there in my teens. I don't dislocate but have many of the other symptoms.

I think diagnosis is really important for clarity, as EDS can manifest in different ways and can also help you access support.

[PaperMonster]

@mamakoukla - really? That’s interesting - but as you say, probably a coincidence!