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.

[Becca19962014]

I take antihistamines every day now and I found it helped with some symptoms, I just thought it was coincidence. Maybe not!

[DoctorShoe]

I'm intrigued regarding the antihistamines, etc. I don't personally have any classical allergic-type symptoms, but do have desperate digestion. I still feel full from some Indian food I ate at 9pm last night, and I'm at my lovely Mum's for a roast and just know I won't manage much. Possibly a touch of gastroparesis, but I wasn't always like this. The likes of domperidone don't help much, and aggravate my hyperprolactinaemia. Cyclizine is okay, but worsens my tachycardia. Ondansetron is wonderful, but so, so expensive where I am.

I think I'll be eternally grateful for all the support I've had here.

In response to the skin biopsy, I was offered it, but they were happy to diagnose without based on their protocols. Also, it wouldn't heal for months!

Someone above mentioned Raynaud's. Just wanted to say me too!

My heart goes out to anyone with dc with eds.

[RockinHippy]

Thanks cardamom - I should have said, she's already on antihistamine, though they were given to help with sleep, which they can a bit, but didn't help much otherwise - we also eat clean & watch histamine food intake too - I realised way begins she was born that all that helped with my own health problems

Becca, you would have, had EDS from birth, we all do, but coming from families where our less severe early symptoms are just "normal" you just don't see it - that's how it was for us, this solves a mystery of generations of poor health & disability, with all sorts of diagnosis which were now clearly not so accurate - my DM had MS - she was diagnosed as EDS too just before she died, none of us had ever heard of it until DD was diagnosed & that was only because a friend on FB sent me an EDSH link after seeing photos of DD with yet another injury - it was a lightbulb moment to say the least, linked all her problems as 1, yet still took me years if battling the system & accused of "transferring my own medical issues into her" by our GP who was apparently also Hypermobile, but asymptotic so refused to believe it meant anything 2 kids later that same GP knows different

Dr Ninis, prescribed ongoing physio for DD, - the physio discharged DD after no core muscle exersizes at all, just catch up injury recovery - as "made full recovery" DD hated her as she was so dismissive of her other symptoms & DD felt disbelieved, when in reality she is do tough, so we didn't bother further - though I will be sending her an info pack to educate her in the new year, too many medics don't get it, but I'm taking the stance than rather than complain - educate them, it's worked well for a few we've dealt with :)

[OodKingWenceslas]

Op tell me more about the hyperprolactinaemia please. I can't take anti depressants to the prolactin and my GP told me he had never come across it in RL before( believed me but just said it was rare) and I wondered that's what yours is?

[MooMaid]

Dr Kazkza diagnosed me - I'm currently 7m pregnant and on the whole OK but joint problem has dogged me from very early on and the tiredness is just energy zapping sometimes... currently trying to find a belt that will help with SPD as it feels like my pelvic area is bruised - but its going to have to be an online order and I need one now!!

Thing is when you say (at work for example) you're excessively tired, people just say "oh you just wait until the baby comes" - I feel a little rage, like i'm just moaning

[MooMaid]

Kazkaz, not Kazkza obviously

[MooMaid]

.... oh and the time a Dr said to me "yes, well I can bend my wrist back like that, it doesn't make me hypermobile. But since you're going privately (as I have insurance) I guess they can diagnose you with what you like"

WTAF

[ProbYou]

Thank you for starting this thread. I also have type 3 HEDS.

I think I have PTSD due to the way I have been treated by HCP's. I was given psychotherapy to convince me that it was all in my head, and that psychotherapist told everyone else it wasn't real. I feel quite screwed up from that. I don't know how I managed to, near the end of seeing her I went to see Professor Grahame and she wouldn't let me talk about the diagnosis. I stopped seeing her and she then tried to get me sectioned, sent the police around the house to bring me to her, they didn't they brought me to A&E and I was sent straight home.

I was assessed by a psychiatrist who said I have no other mental health problem other than depression, just before I saw that psychotherpist. I am sure I have PTSD now after all she and others who bullied me put me through. She had everyone else convinced I was making up the children's health problems too and I was bullied mercileslly by them all.

Professor Grahame and Dr Ninis saw the children and diagnosed them, and referred them on to other specialists. I was still treated like a bit of rubbish by the professionals, who had me down as a child abuser and didn't believe them. Social Services did believe them and closed things down, the others carried on investigating and bullying me as if they were social services and a Doctor, when they were nothing of the sort.

They wrecked our lives and traumatised me, I don't think I will be ever able to get over it. How can I have therapy when the last time I had therapy?

[cardamomginger]

The anti-allergic made the biggest difference. I'm on 200mg nalcrom qds and 10mg cetirizine bds. If I feel a cold coming on I up the cetirizine.

[Becca19962014]

probyou I don't know if it will help, but you are not alone in being treated that way. I saw a private psychotherapist when I became too tired to fight with doctors anymore about being ill. PTSD was suggested to me for other reasons, but also suggested due to how I have been treated by doctors. When I went into hospital and saw prof Grahame and the other prof I was devastated by their diagnosises - it was mentally 'preferable' to me somehow at that point to hear I was not physically ill.

Even now I've been told by nhs psychaitrist and psychotherapist I cannot lose consiousness for any reason other than epilepsy (which I have a possible diagnosis of anyway) or purely psychological and need to find out why I 'want' to do this. The private therapist said otherwise and I was told it was because private doctors etc tell patients what they want to hear - that is absolute rubbish, I have no money to go private but if that is an option for you then you may want to consider it.

[ProbYou]

I didn't see Professor Grahame private, so that blows that argument.

I am sorry they did that to you too. That is worse than the conditions. I have been diagnosed now as well with autonomic dysfunction by the NHNN.

It makes me so sad that I was treated as if I was making up all those symptoms in me and the children, we got no help and treated like I was the devil.

I can't aford to have prolonged private psycholoigcaly therapy. The psychologist attached to the hypermobility unit is hundreds of pounds, per session.

[Becca19962014]

probyou are you seeing anyone at all about it? I don't see anyone anymore as I've been told my local hospital only provides appointments for long term conditions like diabetes, maybe if you are seeing someone you could speak to them? Have you considered finding out about primary care mental health support? They may be able to help you. I didn't qualify for them in my area due to other reasons but you might, it isn't long term but it may help you find techniques that could help.

I'm sorry youve been treated similarly.

[ProbYou]

I would find it hard to enter into a relationship of trust with a psychologist/psychotherapist again. Imagine finding out the last one not only was telling you, also everyone else you were making it up, all the way down to one of the Mum at school, who puts plasters on the children!

I get so upset and angry about the way they spoke about and to me. I get so angry at the way they failed the children and hurt them, over that psychotherapist.

Clearly there are a lot of them about, if you also had the same experience, so a high chance I would meet another.

[Becca19962014]

Well my NHS one shouldn't count. They weren't actually registered as a psychotherapist and this was via the NHS!! - it was a cpn who was doing 'training'!!

I do understand about the trust thing, I have the same issues, I'm so sorry you do too

[ProbYou]

That is dreadful Becca, a training CPN!

I have lost my faith in others.

I was trying to find something in a supermarket cabinet recently. Two families were stood in the way. I ended up unintentionally listening to their conversation as they were not keen to move. They were bitching and moaning about their boss. It traumatises me when I hear that sort of thing, I go home, cry and think of all those people who think they could talk like that about me, it wasn't even the truth.

[DoctorShoe]

So sorry to hear about all of your dreadful experiences.

Re my prolactin levels, completely unrelated, as far as I know. Discovered as a teenager when I started lactating in the absence of any baby/pregnancy. Terrifying at the time, actually, but now just about the least of my worries.

[CFSKate]

www.mumsnet.com/Talk/disabled_parents/2050855-Spoonies-friendly-support-for-anyone-with-chronic-pain-fatigue

[Becca19962014]

Thanks for the link kate

[DoctorShoe]

Thanks, Kate. From what I've skimmed so far, it looks like a great thread. :)

How was everyone here diagnosed?

In first year of medical school, I went to a lecture about EDS, which explained everything. I went away and forgot about it, because I wasn't too bad back then - just a tad bendy (I managed to ignore the scoliosis and occasional walking-stick use - Heaven knows why, now).

A few years later, I went to my GP with grumbling background pain, interspersed with excruciating stabs, rectified by popping things back in. She noticed my skin was hyperextensible, I demonstrated that I was hypermobile, and she confirmed my idea that this was a likely diagnosis.

It also fit in with my previous dx of scoliosis, flat feet, fatigue, tachycardia and possibly related to my previously completely-accepted-as-idiopathic retinal damage.

My rheumatologist agreed, and prescribed appropriate analgesia - something which my GP at the time refused to do. :( My current GP is far more understanding, but at least my previous one knew enough to pick it up.

I have family members with a few symptoms, but none with the full whack.





On a side note, my username largely relates to the fact that I'm a major Dr. Who fan who wears orthotics.

[ouryve]

My joints are tight (as in the hand that barely moves that used to bend in all directions) but very unstable. Leaning on a table to read leads to shoulder pain. Sitting on my feet, as so many people do, leads to crippling foot pain.

The most obvious thing is the random falling over. I ripped ligaments in my foot a decade or so ago and it's never been right, since and i can't balance on it. I walked around a corner and fell into someone, a few months ago. They probably thought I was drunk or trying to pick their pocket :(

[DoctorShoe]

I have a tendency to fall, too.

DP holds my hand for safety.

[ouryve]

Thing is when you say (at work for example) you're excessively tired, people just say "oh you just wait until the baby comes" - I feel a little rage, like i'm just moaning

Oh yes - I had this sort of tiredness with DS1. I was a 6 hours on a really good night insomniac, and then I got pregnant and was lucky to be awake 12 hours a day. Constant tired, heavy, head and limbs, yet normal iron until the last month. I described it to DH as having been whacked with the knackered stick.

[ProbYou]

The dysautonomia was misdiagnosed in childhood as asthma. The pain, Gastro, fatigue and hypermobility were ignored until I was in my early thirties. I was passed to mental health when in my late teens, still at school. I saw two psychiatrists who stated that I had no formal mental health condition, and made a point of stating this in one letter. They stated I had anxiety, sleep distrubance and depression, and were at a loss as to the cause. GP's seemed to think there was something going on with my mental health.

I eventually picked up, mostly by accident one phyiscal health diagnosis after another in my thirties. I got initially diagnosed with joint hypermobility syndrome.

I became a member of HMSA and they stated that we may have EDS. I asked my GP to refer me to Professor Grahame. I had to do a lot of presuading, do all the leg work, tell them where he worked and that was that. If I had gone to my normal GP I don't think I would have had the referral, I went to another partner at the practice.

[ouryve]

I do wish I could take antihistamines.

Narrowed it down to loratadine - then that started to give me raging sore throats. Poor DS1 coughs until he's almost sick on it. Everything else is either ineffectual or knocks me outl My ex once had to ring into work for me because I took cetirizine (all I had on hand) for prickly heat on a hot Sunday afternoon and was still spark out and swearing at him to let me sleep at almost 9am on the Monday!

[PausingFlatly]

HMS here. Finding it very helpful reading the thread.

And to Rockin, who helped me decide to go to Dr Grahame's dept.