To Hate Ehlers-Danlos Syndrome

[DoctorShoe]

My brother just relocated my shoulder.

I'm sick of this. I'm still in my twenties and I'm in desperate pain (not that being older would make it better).

My heart rate rises to roughly 150 on standing for long periods (up to 200 if I so much as go for a walk). This makes me feel desperately ill.

I have the appetite of a bird most days, and have lost over10kg in recent months.

My spine is the shape of a question mark and is getting bendier. I work 70 hours a week.

I'm covered in bruises due to the clumsiness that comes with it and the fact that I bruise like a peach.

I suffer from desperate depression on top of it.

DP and my GP are wonderful, but I just wish I could feel just a bit better.

Thanks for listening to my whinge. I'm just feeling a bit desperate right now.

[DoctorShoe]

Owllady, that's so sad re the fibromyalgia.

Glitter, I get what you mean re the understanding.

My colleagues seem to see my illness as an interesting factoid incorporating party tricks and amazingly stretchy skin. It's so much more, so much worse than that.

[LeapingOverTheWall]

everyone with EDS who's heart races and/or you feel dizzy/collapse when you stand up - have you been looked at for //www.potsuk.org PoTS? There are treatments for that which can help with the heart/dizziness/fainting. It's a linked condition with EDS.

Also STARS are very helpful.

Apologies if you already know about this, but I thought it was worth posting for any lurkers/readers in the future.

[DoctorShoe]

Great links, Leaping.

I have a tentative diagnosis of POTS. Waiting on a tilt table test too.

I love this site! Genuinely feeling a little better.

[ouryve]

YANBU. I have HMS, but I'm nowhere near as badly debilitated as you are, but no I'm in my 40s, it's beginning to restrict what I can do in a way that I couldn't even imagine, when I was younger.

Hope the shoulder behaves itself

[Pumpkinpositive]

My gp said he is entitled to his opinion but that doesn't make it right, especially when he refused to see any of my notes from professor Grahame or my x rays. EDS is far more than 'just' hypermobility. My assessment was two four hour sessions.

I have mild hemiparesis and hyper mobility on the affected side. It's now very mild but used to be pretty ... impressive. Even at its worst, it was nothing like the symptoms being described here. EDS sounds very debilitating.

[Becca19962014]

Owl lady I hope you didn't think I was offended, I'm so sorry if I gave you that impression.

I was diagnosed with EDS whilst being investigated as an inpatient by a specialist for my syncope episodes. STARS are a wonderful organisation they've helped me in ways I can't even describe.

I'm in a legal battle with social services regarding my needs at the moment. It's been going on for years

[unweavedrainbow]

I have classical EDS. I was born with dislocated hips and they've given me nothing but trouble ever since-they're pretty much constantly subluxed. I also have skin problems, eye problems, stomach and intestine problems, bleeding problems with very heavy and irregular periods, am medication/anaesthetic resistant and have resigned myself to never having a baby (gynae problems) I use a walking stick and sometimes a wheelchair (I am 25) I don't currently have a consultant, although I see pain management and physio regularly. I do get disability benefits and some support-I can work part time in a fairly gentle desk job. My worst fear is being in an accident or needing surgery as the recovery would be horrific . I wear a medical bracelet, but I worry...

[RoastingYourChestnutsHurtsAlot]

YANBU I have it too and it's evil

[DoctorShoe]

Unweaved, I have the same problem regarding future pregnancy. I'm hypermobility type, but the possibility of SPD and cervical incompetence terrify me.

And I long for a baby and everything that comes with it. Awaiting gynae appointments too.

It just seems that EDS affects every area of my life.

[unweavedrainbow]

Doctor, my mother, who also has EDS, had cervical incompetence twice and went into pre-term labour (I was born at 32 weeks, my brother at 30). With my brother, there was complications and she haemorrhaged and nearly died. She was also really ill after me. The geneticist said that this sort of family history, plus my other health problems, means that any future pregnancy would have to be very heavily monitored-plus there's all the issues of bringing a child who potentially may have EDS into the world anyway-and questions about whether or not my body would cope, regardless. i just want a baby .

[cricketpitch]

Thank you for posting this - very sobering. I had never heard of EDS and the related conditions. How utterly dreadful for you all. Let's hope that medical science continues to advance and that things can get better for you all.

[Edenviolet]

YANBU

I have EDS, so does DH and our four dcs. It is horrible.

[DoctorShoe]

Thank you so much for the support, everyone.

It doesn't make it go away, but it's genuinely lovely not to be alone. :)

[musicalendorphins2]

YANBU.

[Naoko]

YANBU. I don't have EDS according to the rheumatologist I saw, I'm 'just' hypermobile - but I have hypermobility in pretty much all my joints (Beighton score 9/9 last time a physio did it), born with displaced hips which are still uneven and unstable, scoliosis also diagnosed in early childhood, anaesthetic resistant, some evidence of Raynauds in my hands, and the wooziness upon standing people mention sounds very familiar indeed (I didn't know that was a thing). If it's not EDS, then close as dammit, I guess.

People don't get it. But my mum is the same has whatever I have, and so does my best friend. It helps to have some people around you who do get it.

[Chocolatefudgebrownieicecream]

So sorry you are struggling, all of you.

Doctor, you should seriously consider going ltft. It may make you able to work longer. And even full time you should not be doing 70 hours. If you are worried about pay, it may not be as bad as you think once you take into account less tax etc. you would certainly be eligible.

[ouryve]

And yep, it was pregnancy that was a turning point for me. I've always been prone to wobbliness on standing too fast - spend much of my first pregnancy lying down because I was constantly dizzy. Ended up signing off work sick at 16 weeks. Thankfully, second pregnancy was easier on me and less painful, as I had a hyperactive toddler to deal with. DS2's birth was a precipitate birth, though - went straight from irregular, infrequent, mild contractions to what turned out to be transition and the poo I thought I needed ended in my waters breaking and me pushing him out. And the sensation of transition turned out to be no different to that when I have gripy guts, which is often. (hadn't experienced it with DS1 because I was induced and drugged to the eyeballs)

I retained placenta and haemorrhaged after both births - needed 7 units in total.

I was diagnosed with HMS when I reached a point that the pain, all over, was almost constant and I lost range of movement and function on one hand. DS2 had been diagnosed as hypermobile, by this point (he didn't walk until 21 months) and it's been acknowledged in DS1, since then, and he complains of pain, quite often.

[RockinHippy]

YADNBU !!!!!!

Another with EDSH here, diagnosed unofficially several times over, (POTs & other symptoms confirmed) but as I am no longer Hypermobile, so won't pass a Beighton Scire test any more, so getting it official is a journey to say the least. My kidneys are shot thanks to it all & I have list of other comorbid stuff, & I was told yesterday that my STILL being stuck in bed with a bad flu virus, weeks after everyone else recovered, is down the EDS too


DD who is only 12 has it too, she was diagnosed with JHMS, but I was finding it hard to get school & medical specialists & even our GP at the time to fully understand what that really meant. So I paid for her to see Dr Ninis, who diagnosed it as EDSH with POTs, Dysautonomia & Gastroparesis - which at least means we are getting somewhere

Puberty kicking in has stolen the person she was & it's heartbreaking to see, she struggles so much, with so much as you know too well, but I know we are lucky really in that we don't spontaneously dislocate like you, though realise we both do sublux a lot - especially DD, but POTs anxiety, when you are only 12 & have no living memory of "normal" is a bitch, my ultra tough, bright, bubbly gregarious girl, turns into a jumpy, depressive frightened rabbit during flares. It's so hard right now, as she has suffered bullying in the past because of others not understanding & so she pushes through, pretends to be "normal" & makes it all worse :(


So YADDDDDNBU & I'm just sorry you all cope with this too :(


I do agree with comments above that diet makes a difference & can take that further - turns out we are prone to allergies because of mast cell abnormalities - DD has suffered bad with what was thought to be IBS - frequently at school with severe stomach pain & daily diarrhoea.

Long story short, she ended up in hospital & after an initial battle, we were lucky to be passed on to a Gastro who was knowledgeable in EDS & the allergy link, he diagnosed a blockage caused by Gastroparesis & allergic colitis caused by a delayed action allergy - this turned out to be a soy allergy - which is in way more than you realise - her stomach trouble is 80% improved

She also had to go dairy free for a while, they thought that might be her allergy - she isn't CMP allergic BUT she noticed her aches & pains improved- looking into dairy production & even just the hormones in it, it makes so much sense when EDS is affected by hormones

She has cut down on dairy a lot, eats it only a few times a week & this helps too

Also turmeric is fantastic stuff, especially taken alongside coconut oil & black pepper - we both find it helps

[musicalendorphins2]

OP, have you had a skin biopsy?

[OodKingWenceslas]

My diagnosis is officially HMS but consultant said that she believes they are pretty much the same. I certainly have lots of the symptoms of EDS.
Mine isn't severe, joints have tightened with age so aren't dislocating but do feel 'wrong' at times until I wobble them around and they feel back in the right place.

Mine got bad during my third pregnancy and worsened with the 4th, SPD & crap leg joints put me in a wheelchair and taking codiene , I have improved massively but after 2 years I'm still using a crutch.
Currently paying for private Physio which is v good and he was resetting my hip weekly so I could build the muscle to hold it in place which is pretty successful (4months on!) . Now working on my feet as they are very numb (toes don't move!)

Anyone had a buzzing finger tip?
Or found the pains etc are better when they are ill?
Or get random shooting pains around their body? 20 secs of stabbing pains before it moves elsewhere.

[Becca19962014]

Mine have tightened a bit since diagnosis but that's due to severe osteoarthritis and actually it's more painful and difficult now when I get subluxations. The rhumatologist I saw this year said my joins being less mobile and able to stiffen (the more he yelled relax the less I could - that's not EDS related but due to something else) I definitely never had EDS in the first place. He did say I might have fibro, but that's due to me being so obese (he told gp to refer me to weightwatchers) and wanting to be ill (so told gp to refer me for CBT and psychotherapy to find out why I want to be ill). I'm fortunate my gp ignored him.

Unfortunately the pain clinic is nowhere near where I live and I cannot cope with travelling to where it is. So I have no one involved with me anymore and my benefits have been stopped as this means I am considered to be better

I do get problems with my fingers but my wrists are very bad so it's assumed to be that, I don't see improvement if ill but do get random shooting pains, for me it is where something has subluxed or dislocated and not gone back exactly right, things move a lot so it does stop (the idiot I saw this year trapped a nerve in my knee with his pulling, luckily I and my gp were able to u trap it as I refused to see him again).

I met a Dr in A&E years ago who was training and had developed EDS after pregnancy, she was being badly bullied about it by other Drs who said there was no way she could suddenly get it. I felt so sorry for her. I've no idea what happened to her, often wonder.

[Becca19962014]

Sorry for the essay. I meant to preview that before posting. Opps

[MadameJosephine]

YADNBU! My 2 yo DD has Classical EDS (apparently so do I and my 18yo DS but not as bad as hers) I worry about how it will affect her as she grows. She's only been walking for a couple of months and she is such a fragile little thing :(

[cardamomginger]

Rockin - if she has allergies and intolerance and a MAST cell problem, she may well have a problem with histamine. I have this and a combination of medication (antihistamines and anti-allergics) plus a low histamine diet has done wonders. It's not going to help the structural stuff, but my pain, tiredness and infection is less and my sleep, energy and digestion is much better.