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.

[TheGonnagle]

Hello all. YADNBU. Another signing in with EDS who is finding life rather tricky. All the usual, chronic fatigue, unstable joints, POTS, shooting stabbing malarkey,clumsy, fall often. Also chronic kidney disease (glomularnephritis) which no one is prepared to link to EDS, but seeing as it's a collagen disorder it seems likely.
I find that most of my symptoms are slightly improved when on one of the interminable rounds of steroidsI take along with immunosuppressants so that my kidneys work.
Mostly, I would like to not be so fucking tired all the time.

[DoctorShoe]

Loving this thread so much. Mum got me a great tens machine (I already have 3, but this is better).

Gonnagle, the tiredness is my biggest problem too. I'm so relieved that others understand too.

[BeyondTheTreelights]

I love my tens machine. I have a dodgy shoulder, it moves out of place, then all the muscles around it tense, and it wont go back. Then that affects my already overworked neck muscles (apparently very very common in all hms') and brings on a migraine!!

Yy, tiredness is ridiculous. I can happily sleep for about 15 hours in a night, yet still be no less tired than the nights when i only have four. I get told then that im having too much sleep. I've tried a lot of different sleep times, it is not that!!

[DoctorShoe]

Beyond, I hear you loud and clear re the sleep times!

Much bendy, stretchy love.

[Isabeller]

YANBU

[BeyondTheTreelights]

Doh, i forgot to say that the tens machine can help sort my shoulder before it gets as far as the migraine

As i just said on a weight loss thread too, i get (somewhat irrationally) annoyed at people saying that losing weight will help my health. I was thin and fit when i got ill!

[TheSecretCervix]

Another EDSer and POTsie here. YANBU at OP they both suck!
I'm about to head to the hospital to have steroid injections in my feet but I'll be back later to read the thread properly.

[TheSecretCervix]

That should read YANBU at all OP

[TheGonnagle]

Ooh please tell on the best tens machine people, I hadn't thought of that and I do suffer with extra tight neck muscles that lead to a migraine.

[Becca19962014]

Unfortunately I can't use a TENs machine anymore as it now triggers syncope attacks - which is a pain, in more ways than one, as I found it to be really helpful before.

There are a few people who cannot use TENs machines so before buying one I suggest checking you aren't one of them as they can be very expensive.

I do find the disposable heat packs to be good though they are expensive.

[BeyondTheTreelights]

Becca, asda do a version of the heat packs that are two for a pound. They only have them sometimes though, so when i see them, i stock up. They are just as good as the more expensive ones :)

[Becca19962014]

Thanks. Unfortunately I don't live anywhere near an Asda.

[TheGonnagle]

Does anybody else have super mobile vertebrae in their neck? I can move mine a good inch side to side, sometimes I wake up and it's obviously moved overnight which gives me the most shocking headache!

[Oodbrain]

I don't have much extra movement but neck can give me horrendous headaches.

[DoctorShoe]

Hope all are surviving.

Just posting with a bit of good news. I passed one of my medical membership exams, despite study limitations secondary to feeling extremely unwell.

Feeling rather proud. :)

[Eeyore86]

Congratulations doctorShoe!

Definitely should be feeling proud of that achievement.

Just about surviving though I get the sense it's going to be an interesting pain week sadly.

Well done again

[BeyondDoesBootcamp]

Well done

[cardamomginger]

Well done!!!

[PausingFlatly]

Oh huge congratulations, DoctorShoe!

[trashcanjunkie]

Yeah that's bloody marvellous new doc! Up yours eds and onwards

[Becca19962014]

Well done that's fantastic news!!

[TheGonnagle]

Hurrah! Well done you!

[BeyondDoesBootcamp]

Are there any fainters here who have had a negative tilt table test? I think it may have been because i cannot stand that long, so was tensing my legs as it hurt??

[Becca19962014]

I've had various tilt tests with different results. Many things can influence them.

[paxtecum]

cardamomginger

What are the dietery changes that have helped you?