So, I am tired, nauseous, in pain and can't sleep. I'm lying in bed in the dark googling stuff on my iPad. Bad idea. My pain, and my finger clicking out today made me google "dislocations" and "joint hyper mobility syndrome" (which my doctor says I have). Well, from my sleepy googlings, it seems JHS is generally most severe during childhood, and improves as you get older. Mine is exactly the opposite.
I was always a flexible kid, but I only started dislocating bones at the age of 11 years. By my mid teens, I had dislocated my knees dozens of times, and had begun to dislocate my shoulders. By the time I finished high school, my dislocations were happening roughly once a month, and my affected joints included toes, wrists, thumbs, shoulders, and knees. I am now 24, and I dislocate a bone each week, fingers, wrists, hands, knees, thumbs, shoulders, toes. Yes, I'm seeing a disturbing pattern... Couple that with my worsening joint and muscle pain (which I put down to ME/CFS/FM) and I am kinda scared of my future!
Anyway, recently I had an abnormal blood test that showed inflammation similar to what you would get with rheumatoid arthritis, but my doctor doesn't think I have that. A few times, my doctor has mentioned testing me for connective tissue disorders (like Ehlers-Danlos syndrome) but she never has quite gotten around to it :p. Using the magic of google, it seems that I do have a lot of symptoms characteristic of EDS. Reading through peoples' descriptions of it, I was like OMGosh! That's me!
-loose, unstable hypermobile joints with many dislocations (mmhmm)
-rolling/spraining ankles frequently (yup - especially when I used to do acrobatics)
-bruising easily (always assumed it was ME/CFS related, but I've always bruised more easily than other ppl seem to. I think I get that from my mum)
-often not diagnosed till adulthood (I'm 24)
-muscle fatigue and pain (well some of that is probably just ME/CFS, but my pain is getting a lot worse lately, so I'm looking for reasons why)
-myalgia and arthralgia (ME/CFS symptoms, but mine have got progressively worse lately)
-short sightedness (gotta pick up my new contact lenses tomorrow lol)
-increased risk of pneumothorax (been there, survived that)
-weird sensation of joints "pulling" by themselves (especially in my shoulders, I assumed it was ME/CFS related)
-heart palpitations and other heart problems (I get em from ME/CFS, so I guess I wouldn't know)
I have an appointment with my doctor tomorrow (for my weekly iron injection... Fun fun) so I really want to remember to mention this to her (although I am probably just clutching at straws trying to find a reason for why I keep dislocating, lol). I am also going to tell her that the pain medication she gave me isn't doing anything. (I mean, I had to swordfight on Puzzle Pirates using my knuckles on the space bar because my fingers were too sore to straighten :p that is SO not on! Lol! I'd also like to be able to walk around the house without the majorly hunched over limp, and without holding onto walls and furniture...) Anyway, I guess I should try to get some sleep again. Nighty night!
~Adrielle :D
