I finally saw a rheumatologist on Tuesday. Hurrah! HE ACTUALLY WANTED TO HELP ME!! I feel like I perhaps lucked out when my appointment was postponed a month ago, though it didn’t feel like that at the time. While the doctor I was meant to see was probably very nice – she looked very young. I saw an older consultant guy who seemed to really know his stuff and took me seriously. After lots of poking, prodding and stretching he deduced that most of my issues seem to be caused by hyper mobility although at the current time my joints don’t appear to be super mobile because the muscles have seized up to try and control the crappy joints. There isn’t a blood test to confirm Ehlers Danlos syndrome HT, but the doctor seemed pretty convinced – he did take bloods anyway to check for certain markers that may or may not be present. He’s sending me for an urgent MRI to get a better look at my back as hyper mobility seems to have caused the muscles in my lumbar spine to seize up in an effort to protect my joints as can be seen in my regular x-rays, but it can also cause issues with disks in the spine over time. It’s certainly been wreaking havoc with my sacroiliac joint. Fingers crossed that it’s just muscular at this point… He’s also referred me to see a specialist physio team to try and strengthen the right muscles and find ways that I can carry out regular tasks that I currently struggle with.
Feeling a lot like this poor sod today…
Basically, my connective tissue is defective. Connective tissue holds EVERYTHING in your body together which is why *everything* hurts. Not only does it affect your joints and muscles but it also effects your organs which explains my war with IBS and acid reflux. The diarrhoea/constipation lottery has no winners… I am exhausted all the time because my muscles are working twice as hard to try and keep my joints in check. I’m also exhausted because there is nothing in the world more tiring than chronic pain with no medication, even when you do get to sleep, you sometimes wake up feeling like someone has sunk a knife into your thigh because of that angry nerve getting squished somewhere in your pelvis.
EDS would also explain why I was in immeasurable, earth shattering pain following my gynaecological laparoscopy. They had been dragging me around, unconscious, by my legs… My hyper extending hips, knees and ankles (my ankles are really bad) had been used and abused. I could barely walk and was refused help by a nurse to get up to go to the toilet. The same lovely woman told me to “shut up, there are other patients here!” because I was quietly crying in pain at 3am because post-surgery I’d had no pain relief. Bitch. I cannot wait to send in my letter of complaint.
I also can’t wait to see my useless GP and ask him if an urgent MRI and seeing a specialist physio is the standard treatment for anxiety. I still need him to refer me elsewhere to try and deal with the hormonal shit storm I’m dealing with but at least now I can comment that the rheumatology consultant commented that my hormone levels are those of someone who has had an ovary removed and I’m 27 with two ovaries so can they please try to get to the bottom of it?!
Very slowly getting there. Trying to process the fact that this won’t go away. I’ll never wake up and be “normal” me again. Tired and emotional and feeling physically like I’ve been tied to a rack and tortured – I guess I’ve been subconsciously protecting my joints more than I realised – it’s a shame that the only way to assess my condition involves doing things that cripple me for days but feel okay at the time!