Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So I decided enough was enough and went to the GP

That's a good point. I remember a couple of years ago when my ankle was painful, the GP (different one from this time) told me it was a strained ligament, and I couldn't walk anywhere except round the shops for 9 MONTHS! She wouldn't refer me for physio as she said I was "doing all the right things".

I lost all my fitness that I'd worked so, so hard to rebuild after being so sick before I stopped eating gluten a couple of years before that. My legs trembled like jelly the first time I walked round the block.

I went online to look into it and I remember there being a guy who'd torn a similar ligament playing football, and was back playing 10 weeks later. My thoughts were something like "Eh?"!

I bet this guy would not have been happy with a minor strained ligament taking a year to heal!

that sounds similar to my hamstring tendonitis. those attachments (entheses) behind the knees were bothering me a little bit. then while in a flare i suppose, i had to walk around boston for a meeting. after a few days of that, felt like someone was slicing me with a razor blade. got home, and did heal them mostly within about 6 weeks, but that was by being completely off my feet and icing them all day every day for a month, then switching to stretching and contrast ice and heat for the next 2-4 weeks once i felt scar tissue starting to set up from just the rest and ice.

my chiro at the time told me it was hamstring tendonitis. so with that info, i googled that, and found some information on that. the only people that seemed to have it as badly as i did were triathletes that had triathlon'ed too much. i got it by walking around a city vs doing triathlons.

that, btw was the exception to healing up a tendon problem, but by then, i had a lot of experience on how to treat these things. and i hadn't actually torn anything. tears take a lot longer, usually about a year or more, depending on the severity of the tear.

but the important thing is, those who treat these sorts of injuries, know what is normal, and so they can help advocate for your needing a rheumatologist.

my GP rarely would do what i asked. but if i went to a specialist and they asked the GP to do the same thing that i had requested, he'd oblige. so i got in the habit, when they told me, "you need to go to a rheumatologist", to write it in their letter back to the GP, so he'd refer me. and then finally he did.....

I had the same thing with GP in UK not referring me to physio when I had a bad frozen shoulder. I went off on an extended holiday to another country, saw my old GP there and got immediately sent to physio. 2 sessions and some home exercising later and it was absolutely dramatically improved and it had been bad in the UK for a good six months before.

Sue, definitely no routine colonoscopies here. The NHS version of routine bowel screening is a home "poo" test kit that you get sent every two years after age 50 - smear a sample on a little window on a card, then send it back to the lab in the envelope provided, with results coming back to you and GP within a couple of weeks. Its just an occult blood test, so only checks that and nothing else.

Ugh, bad day. Someone shoot me now!

The more I read on the fibro forum, the more discouraged I get. I swear half the people there don't have fibro but have something arthritisy going on, but tests haven't been reliably significantly positive so they've been dustbinned into a fibro diagnosis. Ugh.

Fibro is not supposed to be a "dustbin diagnosis" but in "diagnosis of exclusion" surely that's what happens. If you get tested for everything else they think it could be, and it's all negative, then they say it is fibro. That is a dustbin diagnosis! never mind if your symptoms are totally atypical for fibro, if you're not absolutely classic for something else, they say that's what it is. It's not fair on people who genuinely have fibro either, as it encourages the idea of it being a label for people who whinge about pain for no good reason.

i tend to agree with you. its both unfortunate for the person who is dx'ed with it who doesn't have it and unfortunate for those who genuinely have it.

i'm hoping that there is more and more research and thus understanding that it will thus be easier and easier to dx it properly.

over the years, i too had spent a lot of time learning about fibro, since it was brought up so often. but the more i read about it, the more i just didn't think it fit. a real clincher was our dean of women students at my former university; she had been dx'ed with fibro, shared all of her research, and she and i were so different in what we were tackling, and she really did sound like she fit the bill. i just remember for her, the unrelenting fatigue and all over body pain. my pain was much more localized, spread throughout my body, but i could pinpoint the exact spots (what i now know to be entheses) where i hurt, and it was so cycle (what i now know to be flares).

like with many newly discovered diseases / conditions, for the longest time, no one is dx'ed with it, then too many people are. but over time it balances out.

Well, for a bit of an extra complication, I found out I have been glutening myself for the last year. Thankyou Lindt for not labelling your 90% cocoa chocolate properly.

good catch! so hoping that gluten is the main culprit as at least in theory that should be something that can be controlled. but as you said, when its a hidden ingredient......

Thanks. Gluten is a definate trigger of joint pain for me, so I am hopeful (but trying not to get too hopeful!).

Wow! I must check my chocolate more often. I just assumed that dark chocolates were fine. I guess they must use either barley maltodextrins or wheat flour as a processing aid. Is it definitely gluten as an ingredient, or is it just that it is made in the same factory as gluten-containing ingredients?

Funnily enough I didn't have any kind of gluten reaction last time I had a single big dose of gluten - a friend had made some gluten free cakes and her husband told me the wrong one, so I ate a whole piece of wheat flour chocolate cake instead of the GF one. I did immediately take anti-inflammatories and anti-histamines and sat and waited for the reaction, and zilch, nada, nothing! Conversely, all I need to do is have traces of maize two meals in a row and I am in agony - and I am a confirmed, diagnosed coeliac both on blood tests and with severe villous atrophy confirmed by endoscopy.