Wednesday, 18 November 2009

My life with Ehlers Danlos Syndrome

Creaking, cracking, subluxations, shuffling around, cannot get out of bed due to severe SI joint pain, kneecaps popping, swelling ankles, teeth problems, severe tiredness, easy I talking about my Grandma, hell no, I am talking about me!!

I am 40 years old and some days I feel 95. Some days I cannot get out of bed for a long while and when I do, I shuffle along like an old Grandma! I have to try to make very slow movements in order to try to wrench my body back in place.Over night my SI joint likes to play tricks with me and decides to sub lax. Sometimes I dread going to sleep. That's if I can get to sleep.

All my life I have had pain all over. Every time I see a doctor, they said the old chestnut 'it's growing pains'. Well I would have thought by now I would have stopped growing! Of course I have but am still suffering the same old pains that I have dealt with all my life. My family have them too - each with their own combination of bodily 'faults'.

Finally this year, I have been able to put a name to answer all my pain issues......Ehlers Danlos Syndrome.

I am not a depressive, or a malingerer after all lol. I have an explanation of my life long issue.

1 comment:

Anonymous said...


I can honestly say that when I first read this I thought you were talking about ME!!!! It's like the exact problems I have, and like yourself I have been brushed off by doctors with one excuse or the other for years... This year I hit 40 and FINALLY this week I discovered EDS. I am now in the process of being referred for this and looking into genetic testing as I have 3 children, and I am worried sick!!!

Thank you for sharing this.... It has helped me immensely, both knowing I'm not the only one and also that I'm not paranoid!!

Carole Pratt x