I am going to get a little personal here. I wasn't diagnosed with EDS hypermobility type until I was pushing 30. However, signs were apparent throughout my childhood. Not just small sign either, but glaring, huge red flags. However, no one ever put the pieces together. Add to this story a few more details: my family's favorite line while I was growing up was "suck it up"; sports were revered in my school and by my family; my dad is an ex-football player and coach and really wanted me to be a boy. I'm sure you can guess where this all leads--I was a major tomboy who played just about every sport and ignored every injury. I somehow always managed my numerous sports-related injuries (As a side note, I also became so used to the sports trainer's office at my high school that I was allowed to tape up other athletes). These problems were all was all considered due to my "clumsiness" or "double-jointed-ness" or just plain bad luck. Then, in my senior year in high school when spring board diving, I inexplicably dislocated my patella during a routine warm-up dive before a meet. Still, no one could figure out the underlying problem. And my family, coaches, etc. just kept pushing. I finished that season of diving, and the spring season of track and field.
I'm not a big believer in the "blame the parents for everything" theories in psychology. However, I am sure that if I hadn't been told to "suck it up" so much as a child, and listened to such advice, my joints would be better today. I probably wouldn't be dislocating at the rate I am now. I surely wouldn't have the insane amounts of scar tissue and other "floaters" that I do in my joints. I'm obviously not blaming my parents for not knowing about EDS. What am I hoping to do is encourage those of you diagnosed with EDS (and know there is a 50/50 chance that each of your children will inherit the gene for EDS) will consider the implications of the disorder. Please, if you suspect you child has EDS, do not push him/her if s/he is in pain. Whatever the sport is, your child's health is more important. Remember that for EDS patients, the damage caused now is long-lasting.
Local anaesthetic failure in joint hypermobility syndrome
When taking biopsies to assess skin strength in Ehlers–Danlos syndrome type III (EDS–III), a Danish group noticed that the patients experienced much pain despite conventional local anaesthesia. When asked, all these patients reported previous experience of partial or complete failure of local anaesthesia in dental or obstetric procedures—for which reason some had been dismissed as hysterics. Pursuing this finding, Arendt-Nielsen compared the effects of local anaesthesia in 8 patients with EDS–III and 8 controls. Although the patients did gain analgesia from intradermal lidocaine the duration of effect was much shorter than in controls. EDS–III (now known as EDS–hypermobility type) is regarded by many authorities as identical to joint hypermobility syndrome (JHS). We wish to draw attention to the possibility of resistance to local anaesthesia in individuals with this common and under-diagnosed condition. Although the pathophysiology of this phenomenon remains unresolved, an important clue that a patient is at risk of local anaesthetic failure might be in front of our eyes.
Full text here.
It happens. Whether you don't want to "be depressing," or you just don't want to have to explain all the facets of your disorder, "fine" tends to be the preferred response even when things aren't at all. I've started to say things like "I'm hanging in there." It allows the person to whom I'm speaking to ask follow up question if they want, but doesn't put pressure on either of us to go into detail. Do you have a response that you like to use? Let us all know in the comments!
I have been on a major downhill slide with my EDS lately. I know EDS tends to be progressive, especially at certain times in females' lives when hormones tend to go through some changes (pregnancy, menopause, etc.), but I really did not expect it to be this bad this quickly. I feel like every day I'm falling apart a little more. I have very few joints left in my body that do not dislocate sporadically and painfully.
Due to all of this, I've been homebound quite a bit lately. It has been really difficult having so many days where I know fun things are happening all around me, but I cannot be involved. Especially with the weather lately (snow, ice, and cold), I've been afraid of falling and making my situation even worse. I think all of this is a long way of saying that I really, really dislike winter in Pennsylvania. It does look pretty from the window, but it's doing a number on my joints and on my mental well-being. I'm hoping for a early and warm spring!
I have been spending most of my time in center city Philadelphia lately. Not because I'm checking out the newest and hottest restaurants or gallery openings. Nope. What I have been doing is checking out some of the new hospital buildings and radiology equipment. Because I'm cool like that.
I managed to squeeze a ton of my recurring doctor appointments and tests in before the end of the year (while my deductible is met, of course). Which means I have the 3 weeks before Christmas packed full of charts, needles, monitors, and the like. I also have to get an arthrogram on my shoulder to find out what is wrong with it. With all the radiology tests I've had in the past few years, I believe this last one may put me over the edge. I won't need a Christmas tree this year--I will be glowing just like one. Merry Christmas to me! And Happy Holidays to you!