skol
28-08-2006, 03:06 AM
Hello One and All,
I've just discovered this site ten minutes ago. I'm in a bit of a predicament at the moment.
I was born with a rare connective tissue disorder called Ehlers Danlos Sybdrome. I'm the Hypermobile type, which means my joints frequently fall out of the joint (sublux - not complete dislocation). There are lots of problems associated with this.
On 24th April 2006 I was bending over ont he garden smoothing down some soil when my left ankle subluxed and I did the splits, with one foot ending up in a ditch about 5 feet away from the other - imagine an angle of around 130. At the time I felt as though someone had hit me between the legs with a sword. I was fine after ten minutes, and fine the next day. Then on the 26th I was unable to move, and am still in the same state now.
I took myself to accident and energency after a week and was x-rayed. A follow-up appointment at a fracture clinic saw me being diagnosed with a muscle strain. The x-rays looked normal.
By June I was no betetr and finally had an MRI scan. A week later I was given the diagnosis of OP. The MRI also found that I have something called Tarlov's Cysts - cysts growing in my sacrum around the spinal chord. they do lots of horrible things, like eroding the bones, loss of bladder and bwel control, EXCRUTIATING pain worse than child birth.
Anyway, I can deal with everything else, but OP is ruinging my life. A doc has told me my pelvis should be healed by jan 07. I have been confined to bed since April, I am unable to look after my 4yr old son (I'm a lone parent), and the pain just doesn't seem to be getting better.
I've moved my bed downstairs to avoid the stairs, but even staying still doesn't seem to help.
A month ago I was able to walk around my town hodling my son's hand with NO PAIN. I thought I'd turned a corner. I was wrong!
Diclofenac doesn't help, tried ********, and now I'm using Fentanyl patches (12mc per hour). I'm in so much pain today that I've put two paches on to double my dose, and taken Diclofenac. I'm hoping it will all help me sleep and give me a break from the pain if nothing else.
I read that in some OP cases there can sometimes be an UNDERLYING BACTERIAL INFECTION in the PS joint, and that antibiotics are needed. I'm going to talk to my doctor about this and see if he will run some tests or evenjust give me a broad spectrum antibiotic.
Who knows, it may help, and with Ehler Danlos making surgery risky (if I'm cut and sewn my wounds just reopen because my collagen isn't formed properly, and docs worry my lungs would burst if they had to breathe for me while I'm uder a general anasethic), I guess that antibiotics are a safe option to try.
I'm just having a bad day, and feeling like my pelvis will never heal and that I'll never have a normal life with my son again. I've spend 6 excrutiatingly painful days with him in the last month. Aaaarrrrrrrgggghhhhhhhhhhhh!
I just want my life back!
I've just discovered this site ten minutes ago. I'm in a bit of a predicament at the moment.
I was born with a rare connective tissue disorder called Ehlers Danlos Sybdrome. I'm the Hypermobile type, which means my joints frequently fall out of the joint (sublux - not complete dislocation). There are lots of problems associated with this.
On 24th April 2006 I was bending over ont he garden smoothing down some soil when my left ankle subluxed and I did the splits, with one foot ending up in a ditch about 5 feet away from the other - imagine an angle of around 130. At the time I felt as though someone had hit me between the legs with a sword. I was fine after ten minutes, and fine the next day. Then on the 26th I was unable to move, and am still in the same state now.
I took myself to accident and energency after a week and was x-rayed. A follow-up appointment at a fracture clinic saw me being diagnosed with a muscle strain. The x-rays looked normal.
By June I was no betetr and finally had an MRI scan. A week later I was given the diagnosis of OP. The MRI also found that I have something called Tarlov's Cysts - cysts growing in my sacrum around the spinal chord. they do lots of horrible things, like eroding the bones, loss of bladder and bwel control, EXCRUTIATING pain worse than child birth.
Anyway, I can deal with everything else, but OP is ruinging my life. A doc has told me my pelvis should be healed by jan 07. I have been confined to bed since April, I am unable to look after my 4yr old son (I'm a lone parent), and the pain just doesn't seem to be getting better.
I've moved my bed downstairs to avoid the stairs, but even staying still doesn't seem to help.
A month ago I was able to walk around my town hodling my son's hand with NO PAIN. I thought I'd turned a corner. I was wrong!
Diclofenac doesn't help, tried ********, and now I'm using Fentanyl patches (12mc per hour). I'm in so much pain today that I've put two paches on to double my dose, and taken Diclofenac. I'm hoping it will all help me sleep and give me a break from the pain if nothing else.
I read that in some OP cases there can sometimes be an UNDERLYING BACTERIAL INFECTION in the PS joint, and that antibiotics are needed. I'm going to talk to my doctor about this and see if he will run some tests or evenjust give me a broad spectrum antibiotic.
Who knows, it may help, and with Ehler Danlos making surgery risky (if I'm cut and sewn my wounds just reopen because my collagen isn't formed properly, and docs worry my lungs would burst if they had to breathe for me while I'm uder a general anasethic), I guess that antibiotics are a safe option to try.
I'm just having a bad day, and feeling like my pelvis will never heal and that I'll never have a normal life with my son again. I've spend 6 excrutiatingly painful days with him in the last month. Aaaarrrrrrrgggghhhhhhhhhhhh!
I just want my life back!