Where I am up to as a zebra...

So I got a written diagnosis of Hypermobility, osteoarthritis and fibromyalgia and a verbal one of EDS as the docs are too scared to actually diagnose EDS at the moment!! I am however going to see the UK number 1 doc for EDS in London next month!!  It is costing me £300 but if that means I get proper care then I am willing to pay!! The physio I am getting is useless, the meds I am taking are useless too and I have now lost my job through illness. Hopefully it will all change after October.

One good thing though, I have been seen by my cardiologist a few times and he has booked me in for a tilt table test to see why I keep fainting. I should get some tips to prevent it then and be able to stay in work more than a week!! After that I am back to neuro for a follow up.  Things are getting done, I am pleased :)

As for pain relief, I am up to 50mg of Amitriptyline right now.  I am still not convinced that an antidepressant is going to do the trick no matter how much they tell me it helps nerve pain!! But seeing as I can't take anything else except paracetemol (down to hiatus hernia or over sensitivity to drugs!) I will have to try it until my pain clinic referral comes through! I am due to go back in 2 weeks for a medication check up and maybe they will up it a bit more.  It's doing nothing for pain right now.

Letter from the Rheumy...

I have to correct the doctor on this letter... he states I score 6/9 on the beighton scale... well I have my right wrist in a splint so obviously I couldn't show him that day!! I score a 7!


This is what I was wearing...

lol.  That's all for now x