Bratpony wrote:
^Have you ever looked into any kind of connective tissue disorder? What you describe sounds awfully familiar. Obviously, as I said, I've never had any formal diagnosis, but many people who have connective tissue disorders never do, for the reasons Jana listed. It tends to be a lot of kind of related or even apparently unrelated things that people keep returning to their doctors for and no one ever puts all the pieces together or considers they may stem from the same cause. Most of the symptoms can pop up in anyone as single condition, which is why it takes looking at the 'big picture' to realise what's going on.
I believe, and if correct I want a formal diagnosis, I have hypermobility-type EDS. I was told by a specialist once I had 'joint hypermobility syndrome', but I can't for the life of me work out whether most doctors just use this as interchangeable with HEDS or how many recognise it as just part of the symptoms of HEDS. One source says JHS is 'indistinguishable from EDS Hypermobilty-type' so clearly acknowledges the existence of that, but also clearly suggests JHS is something else BUT gives EXACTLY the same description as for HEDS.
I have come to the conclusion most doctors don't know what they're talking about either.

I generally just get the generic ibuprofen, but I have nurofen right no as that's all that was available last time I needed some. I try not to take it except when I really need it at the moment, which is during episodes like today or when I end up having to stand on the train. My mum is on amitryptyline at the moment, which she had diagnosed for trigeminal neuralgia.

Honestly, my least favourite part of my (likely) EDS is the syndrome's tendency for lidocaine to work 'poorly or not at all'. Let me tell you: being a 7 year old girl who had to have 2 baby teeth removed by a dentist who said she 'must be imagining it' because she'd had a local anaesthetic does WONDERS for your lifelong feelings about going to the dentist.
I have an appt with two different rheumatologists next month to discuss EDS as a possible explanation for my health issues. While having an exact diagnosis wouldn't change much, it would make me feel better knowing I'm not imagining all of this.

I don't bother with low level pain meds most days, as I have a high tolerancy to them and would have to take a lot very often. I have enough stomach issues and don't need ibuprofen making things worse. LOL

And I second wolfbitch's suggestion to to Mayo. I went to their facility in MN for a week for a bunch of tests/consults, and was very very impressed with everything.




a box of rain will ease the pain, and love will see you through...