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.

[daisyji]

hello, I don't expect you to remember me cardamomginger. You really helped me to find a surgeon Mr Vik Khullar. I've also been diagnosed with Ehlers Danlos and I'm in a bad way with pain. Just wondered if you'd mind letting me know the name of your immunologist? many thanks

[BeyondDoesBootcamp]

Bumping this as it is EDS awareness month :)

[DoctorShoe]

Gah, I've been operating in theatre all week. Am now at home on solpadol, tramadol, lyrica, ibuprofen, diazepam and a heat patch for my back. Still in agony.

I have known back trouble. It isn't new. But, ouch!

Just having a whinge, really.

[BeyondDoesBootcamp]

Ahh, i have autoimmune arthritis (psoriatic), and apparently its quite common to get other autoimmune issues secondary once you have one, so i wonder if that is whats causing my allergies to be so flarey right now...(Eczema, asthma, conjunctivitis and rhinitis). Who knows lol. Doesnt make much difference anyway, am already on dmards for my arthritis :)

[cardamomginger]

Auto-immune problem that basically boils down to being too sensitive to histamine (plus an immune system problem, but a couple of vaccines sorted that out). In terms of symptoms I had/have multiple allergy, eczema, asthma, long-standing bladder infection, problems with infection generally, IBS, and general being run down and exhausted all the time.

My immunologist says that this kind of stuff can be associated with hypermobility (plus all the other stuff - POTS, prolapse, Raynauds, other connective tissue problems, etc).

[BeyondDoesBootcamp]

Cardomon, i missed what the problem was? Curious as i take daily cetirizine too, as does my ds1 (but as he's only four we try to limit it and the beconase he also has)

[cardamomginger]

Low histamine diet. There's info here:

www.allergyuk.org/common-food-intolerances/histamine-intolerance

I have a more comprehensive (and more scary!) list that my consultant emailed me, which I can email to you if you send me a PM.

Exclusion diets are a PITA, but it manageable. For me, not trying to substitute things and create 'fake' versions of foods works better.

The biggest improvement came from medication - anti-allergics (sodium cromoglicate) and anti-histamines (cetirizine). That got me about 70% better. Whether I could have managed it without the pills and just the diet, I don't know, and I feel so much better I don't want to risk stopping the medication!!

[paxtecum]

cardamomginger

What are the dietery changes that have helped you?

[Becca19962014]

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

[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??

[TheGonnagle]

Hurrah! Well done you!

[Becca19962014]

Well done that's fantastic news!!

[trashcanjunkie]

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

[PausingFlatly]

Oh huge congratulations, DoctorShoe!

[cardamomginger]

Well done!!!

[BeyondDoesBootcamp]

Well done

[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

[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. :)

[Oodbrain]

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

[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!

[Becca19962014]

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

[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]

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.

[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.

[TheSecretCervix]

That should read YANBU at all OP