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To Hate Ehlers-Danlos Syndrome

(132 Posts)
DoctorShoe Sat 20-Dec-14 15:20:29

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.

ChristmasDawndonnaagain Sat 20-Dec-14 15:24:20

I have an eighteen year old dd with EDS. She's just gone to bed with codeine. She has had a great morning, we went to local garden centre, in the car, bought some new fish for her aquarium and came home. She's exhausted and in pain.
Having said all that, she has a great physio and does do all her exercises regularly, if you can, get a physio referral. We were lucky in that our physio is hypermobile so does have some idea.
Oh, and my disabled dh put my shoulder back in yesterday, twice!

GlitterBelle Sat 20-Dec-14 15:28:31

No, you're not being unreasonable!

I've lost so much to it. I'm bedbound much of the time, can't work, on ridiculous amounts of painkillers, am a wheelchair user, and worst is the functioning/energy levels.

I also feel like I got my diagnosis and then you're left to it.

I don't feel there are many other conditions that are as severe when you have NO support, and are left to just get worse and worse.

The Pain Clinic say it's not curable, and to live with it. They refuse to manage it. Physiotherapy say there's nothing they can do as they can't see people on a long-term basis unless they're children. I now have no consultant as they're not keeping people on their lists.

I feel like I've been left to rot on my worst days. I try so hard to keep going and keep fighting, but I've had enough.

DoctorShoe Sat 20-Dec-14 15:30:10

You poor things, Christmas! Lovely to talk to someone who gets it, though.

I had a great physio, who got me into a hydrotherapy pool, but then my job sent me across the country. I'm not in the UK, and occupational health here has repeatedly made things more difficult for me and dp (he has multiple health issues too).

I normally cope. But a bit of decent connective tissue wouldn't go amiss!

DoctorShoe Sat 20-Dec-14 15:31:59

Oh, Glitter, I rally hear you.

The exhaustion is something else.

My mother thinks I'm just lazy.

But honestly, all I can do sometimes is sleep.

Becca19962014 Sat 20-Dec-14 15:34:09

I totally understand why you feel that way! I have it too. Although my gp is fantastic (and I've told them this) Ive found others beyond lacking understanding.

All treatment has now been abandoned and I've been told to accept it will just get worse, stop complaining and get back to work. My benefits are a mess as I am no longer being seen by anyone as the treatments that sometimes help made mine much worse and now I have severe osteoarthritis as well as the rest of it.

DoctorShoe Sat 20-Dec-14 15:39:07

I'm so scared that I'll have to give up work.

I'm a doctor. I love what I do. I really care.

But I'm just so tired and sore and sick.

I potter along, in part, for me, also for my patients, and for DP. I'm tired of trying to be stoical, because I'm just not very good at it.

Becca19962014 Sat 20-Dec-14 15:50:38

I was really upset when I was forced to give up work, i loved my job so much and now on top of that loss I have the benefit system to deal with which doesn't understand my cinditions at all. I really hope you won't go through that as well.

cardamomginger Sat 20-Dec-14 15:53:07

YANBU. I'm late to being diagnosed with EDS. Was kind of puttering along, suffering from the odd thing here or there (joint problems, IBS, infection, near collapse on standing, Raynauds, bruising) oblivious to there being anything wrong with me. (Sounds stupid, but my mother was the same, I led a very 'sheltered' childhood and adolescence, so I just assumed this was normal.) Then had DD and sustained massive birth injuries and 5 separate types of prolapse. It was only when my team of surgeons and physios started commenting on my hypermobility, that I went to get a formal diagnosis. Birth injuries aside, I am quite lucky in that treatment and dietary changes have helped with some stuff and I can manage other things.
YANBU at all.

DoctorShoe Sat 20-Dec-14 15:53:36

Becca, my heart really goes out to you. Sending un-mumsnetty hugs and brew (as long as caffeine doesn't do crazy things to your heart rate!).

DoctorShoe Sat 20-Dec-14 15:55:19

Cardamom, I was diagnosed in my twenties. I also thought stuff was normal.

But I suppose needing a walking stick at fifteen never really is. grin

Owllady Sat 20-Dec-14 15:57:01

Can you have scoliosis correction surgery?
I have never been tested for eds (is there a test?!) but both myself and my daughter have hypermobility in our joints and that's bad enough. I've dislocated my knee and had more soft tissue I juries this year than I can face. My daughter is waiting for scoliosis correction surgery for a 65° curve. We've not been told it could be due to hypermobility at all. Is this quite common?
Sorry for asking you questions when you seem quite miserable sad xxx

Eeyore86 Sat 20-Dec-14 15:58:19

Definitely not unreasonable at all

I was diagnosed in Jan this year and it's pretty shitty it's nice to have a name for what's wrong but that's as far as it goes!
It's a horrible condition that most people don't understand I dislocate my shoulder in my sleep most nights and I have chronic pain which makes life unbearable at times but you just have to get on with it, most doctors I've come into contact with sadly haven't had a clue what it is.

Some days all I want to do is stay in bed and cry as that's the least painful option, I'm on a night out tonight and can't image that I'll see any of tomorrow as it'll take everything out of me.

Hope your feeling a better soon OP does heat help you at all?

cardamomginger Sat 20-Dec-14 16:01:15

Doctor - I grew up watching ballet and ice skating. I thought there was something wrong with people who weren't as bendy as me! And my utter uselessness at any form if coordinated sports I put down to being a geeky nerd. Ha!!

Walking stick at 15 is not great sad.

I've recently been seeing an immunologist. All if this stuff can be associated with a dodgy immune system. His treatment plus dietary changes has made a massive difference to my energy levels and the way my body responds to illness and infection.

GlitterBelle Sat 20-Dec-14 16:03:11

Owllady - google the Brighton Test. There isn't a blood test for Hypermobility type, so that's the criteria for diagnosis.

It might be of interest to you to see if you could get a formal diagnosis.

DoctorShoe Sat 20-Dec-14 16:03:44

The scoliosis surgery (based on my angles, the way I'm rotated, and ribcage deformities, etc.) could well make things worse. I'm also prone to post-op complications. I've had a few minor procedures, and come out the other end worse for wear for months every time.

Genetic tests exist for some types, but not mine. They did, however, rule out aneurysms etc. But scoliosis can come with EDS. I think I may have received better care than some because I'm medical. Sad but true.

On top of it, to the naked eye, I look completely well. It's not that I want to look unwell, but if I stand on public transport and such, I'm prone to falling. Where I am, I don't have easy access to anything accessible.

Becca19962014 Sat 20-Dec-14 16:04:35

Thanks for the hugs. Caffeine isn't good for me, but I have a sneaky cup sometimes when I know the boost to heart rate is actually needed. But don't tell anyone wink

When I was diagnosed professor Grahame went through all the doctors and nurses on the ward before I would even consider my knees bending upwards wasn't normal.

The Rhumatologist I saw this year told my EDS doesn't exist. It's just hypermobility which a bit of effort on my part in physio would easily sort out. 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.

GlitterBelle Sat 20-Dec-14 16:04:39

I hope you don't all mind me sharing this, but I've just posted an article about coping methods to get through Christmas with a chronic illness.

My ideas was also to try to share with family members/friends, so it might make them think a bit as well!

DoctorShoe Sat 20-Dec-14 16:05:59

Thanks for the tips, everyone. I'll take it on board. This level of support is lovely.

I do take baths. As regards dietary changes, I'm lucky if I can eat a sandwich these days.

My figure is lovely, but I know how unhealthy it is!

Becca19962014 Sat 20-Dec-14 16:06:24

I meant to add I know someone who is a doctor with EDS so depending on how it effects you and your age you could stay in work for sometime!

I've been told no operations due to the issues caused by my EDS.

GlitterBelle Sat 20-Dec-14 16:08:07

Becca19962014 - attitudes like that (that it doesn't exist) just makes me feel so much worse.

You know when people admire people with disabilities for getting on with things and not complaining? I feel I don't I get the chance to do that as I'm constantly having to justify myself/explain myself. I know a lot of people with MS who get so much more understanding, yet they're all about to work and function better than me. (I don't normally compare conditions, I just mean the understanding part!).

I wish doctors who said that kind of thing were immediately fired. It shows ignorance beyond measure, and proof they've never ever researched the condition.

Becca19962014 Sat 20-Dec-14 16:08:13

I've not been able to get into a bath for years sad if I can find it I'll post the information I was given of things to try when I was diagnosed much easier said than done!

GlitterBelle Sat 20-Dec-14 16:11:22

Has everyone who needs it looked into disabled facilities grants, and similar?

It's means-tested, but local councils will help fund adaptations such as stair lifts, level access showers, etc. If you have an income they'll sometimes help towards it.

Just worth mentioning in case it helps anyone.

There is also Home Improvement Agencies which help older/disabled people. They often provide a lower cost gardening and handyperson service, and sometimes benefit help too.

BendyMum15 Sat 20-Dec-14 16:11:31

Definitely not unreasonable. I have it too and it sucks.

I found the HMSA to be a great support as everyone knows how you feel and are understanding.

Owllady Sat 20-Dec-14 16:12:18

Sorry I didn't mean to offend anyone with my hypermobility comment, I meant it in a sympathy context! My daughter is actually severely disabled, so I wouldn't be as naive to compare my own dislocation problems with those much worse.
I'm sorry blush
People aren't great with conditions they can't see or there's little understanding. Two of my friends have fibromyalgia (one much worse than the other) and she's often treated by medics as if she's playing it sad

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