If you've been following my blog for a while, you've probably seen me mention my hypermobility & problems with my left knee either dislocating or subluxating. I've had this for a while and doctors have either brushed it off, or given me simple strengthening exercises to do that have proven pretty useless.
I'd learnt about Ehlers Danlos Syndrome (hypermobility type) from friends with it, and they agreed I probably have it too. The more I read up on the symptoms, assessed (and reassessed, and re-re-assessed!) myself with the Beighton score, the more I thought I really could have it. I spoke to doctors about it, but they held misconceptions about the condition & believed that it always had to run in families & always had to be very severe. My hypermobility wasn't considered *enough* to warrant diagnosis, & the other symptoms were attributed to my Fibromyalgia (regardless of the fact that I told them I'd had this before the fibro symptoms started).
Last month (after some dislocations that were a lot harder to put back in) I decided to speak to the GP again about my knee, & tell her that it had been getting worse. She referred me to the Orthopaedic Clinical Assessment Service at a local hospital. I had my appointment yesterday (15th) & saw a Specialist Physiotherapist. As I knew I'd be examined too, I made sure that I mentioned problems with my other joints that I've had for years, and also things in the past that I thought could be connected (My jaw used to dislocate when I was a young teen. I was referred to a Maxillofacial doctor who sent me for an Xray, but my jaw was back in place at the time so nothing was found! I also have very flexible ankles that like to give way suddenly, and I used to sprain my ankles and wrists very easily).
After a few questions (medical history, family history, medication, previous investigations or physio etc) the physiotherapist asked to examine me. I was embarrassed about getting my (extremely pale, veiny, bruised, scarred, stretch marked) legs out, but of course he needed to see for himself what was going on. He got me to stand up and push my knees back as far as they can comfortably go. He also asked me to lie on the bed, bend and stretch out each leg so he could examine my joints, muscle strength etc (so many examinations, I couldn't explain them fully!) I'd mentioned my hips being very loose too, so he examined them.
As he moved my legs about to check for problems, my knees and hips let out so many very loud cracks! A particularly impressive one from my right hip had him jumping a mile! I couldn't help but laugh when I saw his face. He could actually feel my hips and knees popping out then going back in. Constantly clicking joints & extra bendiness is my "normal" though, I suppose. Until I heard about hypermobility, I just assumed everyone was like this!
The appointment went much better than I expected! I went in, just expecting to be told my knee was a bit weak or something, but I barely had to explain anything as, when I was examined, the Physio suddenly piped up "Has your GP ever diagnosed you with Hypermobility Syndrome?".
I explained about my problems with getting doctors to believe me, & how I'd tried the Beighton test a few times. He got me to do that test again, and nodded along as I showed him. The final part of that test is to see if your palms touch the floor when you stand up and try to touch your toes. Thankfully my back wasn't too bad that day, so I was able to attempt that. With legs together, I could get my fingertips on the floor but no further. He asked me to put my legs slightly apart and try again. That time, my palms did touch the floor (just). As my legs were apart though, I'm not sure if that counts. He didn't say what my score was, but I'm guessing it must've been high.
Finally, he asked me to walk for a few steps (without my stick), so he could see if there were any problems with my gait etc. Thankfully that was the last task, as I was dizzy, exhausted, overheated, in lots of pain, and basically needed to sit down!
He concluded that I did have Hypermobility Syndrome (he didn't say EDS hypermobility type specifically but I think this is considered the same thing?) my left kneecap dislocates, he noticed my hips were quite loose & that I tend to walk with my toes facing inwards; which is what could be causing my knee problems. He also said that surgery on my knee was an option, but he wouldn't recommend it as, because I was hypermobile, it could make things worse. He is referring me for a long programme of Physiotherapy & if needed afterwards, I could be re-referred to him & may need to have special insoles to help with my walking.
So I guess I'm an "official" Bendy now! It really felt so good to be believed & to actually have symptoms show, rather than everything being based on what I say! The physio is writing a letter to my GP with the diagnosis, his findings etc. I'm sure I'll be blogging about my experiences with this physiotherapy programme too.
I do want to speak to my GP again pretty soon, as I've had some horrible pain flare ups recently & today I was doubled over. I should've rang, but surgery was closed by the time I realised I needed to ask for pain relief. I'm not even sure what meds could be suggested! Management is important, but I really do need to have something to take as needed (at least!) for the severe pain. I can't see how I could effectively manage my symptoms when the pain restricts me so much & causes me to flare up so easily. Maybe this latest diagnosis will help her to see this?
I should add some sort of About Me page to this blog, but here are my diagnoses for now:
- Hypermobility Syndrome (EDS?)
- Irritable Bowel Syndrome
- Overactive Bladder Syndrome
- Clinical Depression
- Generalised Anxiety Disorder
- Obsessive Compulsive Disorder
- Social Anxiety
Phew! I think that's enough for me to cope with. I don't want anything else, thanks!