I'm new here - just been diagnosed yesterday. Up until then I've not really heard of this condition.
A brief history - I'm 33, I'm a teacher and have 2 children. For the past year I've been suffering with joint pain. It began in my fingers and toes, but has since spread to my hands, wrists, elbows, shoulders and left hip. My GP had enough of me complaining about everything from constantly being tired (for several years), stomach problems and now this - so he referred me to a rheumatologist; and I went yesterday. He asked me a whole bunch of questions then examined me. Once he discovered I can bend my fingers at right angles to my hands he asked if i could touch the floor without bending my knees, then put my palms flat (which I can). He said then that I have hypermobility syndrome and that he'd send me a leaflet about it - in the meantime I was to look it up on the internet myself. He also said that I was to have blood tests and xrays to rule out anything else as it's possible to have this and something else too. So I had lots of blood taken, and xrays of my hands feet, lower back and chest. Then I go back in 4 weeks. I never knew that my degree of flexibility was unusual or potentially problematic, I just thought I was lucky!
In the meantime what do I do? From the reading i've done, i guess i'm quite lucky. my worst problem is the constant aches and pains and lack of sleep - but i've got used to the fact that i'm always tired and push through it as much as possible. Recently though, i've not been able to do all my work as marking books and using the computer for so many thinngs causes pain and spasms in my dominant hand. I'm worried that this will affect my job (my handwriting was slow and barely legible the other day because it hurt so much) and dont know what to do. The consultant didn't tell me. I'm also quite slow to get going in the morning (physically and mentally due to never getting a full night's sleep) and get really ratty if I hurt a lot. I'm glad I'm going back in a month - but what do I need to ask when I do? What should I request? Physio? OT? Am I entitled to a risk assessment or something at work so that I can attempt to do my job but not be told off for lack of paperwork if I'm in pain (or grumpy!)?
Also, is it true that this condition explains things like easy bruising and gastro-intestinal problems? I've always had these but they've never been explained. Looking back, I can see that I was hypermobile from birth - my feet were facing inwards when I was born and I had physio when I was about 6 or 7 to teach me how to walk in shoes properly because I was wrecking them and needed new ones every 6 weeks. I had to learn how to stand on my feet properly because my normal standing position is unnatural. (I still lock my knees out when I stand because I'm so used to it I can't stand "normally"!)
Yesterday I was relieved because up till then my husband was convinced I had lupus (i thought I was arthritic) but today I'm upset and angry. My mum has osteoarthritis and osteoporosis. In talking to her today, I discoverd that she clicks out her elbows to get the joints in the right position, which I do with my ankles, wrists and ribs. I can do it with my shoulders but rarely need to. Guess I know what my future holds!
Sorry for the very long post - I'm so delighted something like this forum exists because I really feel lost. Any advice on what I should / could do next would be great.
Thanks modnote: moved into main Diagnosing JHS thread