Got to the point of rehearsing conversations daily so decided might as well get it over with!

It did not go at all as I wanted, I wanted her to seriusly consider my suggestion that it is AS and listen to me recounting my history and how it fits. But she did not. She didn't listen to anything I said except to rebuff it with her facial expression and words.

Do you know that whether you can touch your toes is a reliable diagnostic tool for AS? Yeah me neither! Bloody years of yoga to be able to do that, and she should see me try first thing in the morning!

I told her, history of SI pain then joint pain, not being able to bend my neck in the mornings, heel pain, family history of back pain and humped back etc etc. She told me she thinks it can't be AS because I can touch my toes. Suggested fibro, which doesn't fit my symptoms properly at all.

Still, it is not for a GP to diagnose or not, and she has referred me to the musculoskeletal specialist who does visiting appointments at the surgery, and arrnaged blood tests for ESR, ANA, CRP, Rheu factor, LBP and full blood count. Not a proper rheumatologist but it's a good start. And she did agree that she definately would not suggest it is depression.

Onwards.... well what I want to know now is- I know I flare within a few days if I eat starch- blood tests are on Monday, is it worth the suffering of eating starch now in hope of increasing the chance of getting a positive CRP. CRP was normal before when I was inflamed as hell, but if there's a chance of getting some kind of indicator from the blood tests so they don't just assume fibro...

She said she considered doing HLA-B27 as well but decided not to, thanks for sharing that with me!

ESR and CRP is not raised in some people with even progressive AS.

I think its called a Schobers test, to measure how much movement lower spine has (2cm). There is also the occoput to wall test(12cm), amungst others. Another sign is how much you can move your chest(0.5cm). I put what my Doctor measured me at last week in brackets.

I went for a long, long time with no help. To the point that when I did see someone competent (Rheumatologist) they said I had many, many areas of extensive unreversable damage.

I have never ever said to a Doctor what I thought was wrong with me. I just tell them how I feel and answer thier questions.

I hope you get help and make the best of a bad situation. Good Luck. I know how frustrating it can be. Hang in there.

Thanks. I've looked around and everything I read says FM can cause joint pain but along with the more typical muscle pain etc. I don't have that except tightness in my neck, it is all in the joints.

I would think that with my symptoms I ought to be able to get an xray to rule out AS before then could reasonably diagnose FM. But who knows, this is the NHS we're talking about.

I am presuming you to be in England?

If so, simply read the NHS patient charter (It is online I think) and quote it at your GP, insist upon a rheumatology appointment, there is enough evidence to merit such. The only reason your requests can be denied is if there is clear medical evidence to negate the need for such a referral. There is nowhere near enough evidence.

The Shcobers test is more a test of fusion and deformity. In my formative years I could touch my toes, stand straight against a wall but I was still in agony. You need to be polite but insistent with your GP, ...


Take a copy of my book and ask her to read it (wow more royalties coming my way.........!!!!!lol

Thanks, that's useful info. Schobers test- she didn't even do that, she just asked me if I could touch my toes, I said yes, she said it can't be AS then. I replied that I wasn't claiming I have fusions and am aware that if I do have AS it would be a mild case.

I have found GPs to be worthless when it comes to AS, but they don't have any specialized training in that field. It's just a shame that so many will not recognize their ignorance and will push a wrong diagnosis.

In the UK, its probably good you DON'T get an HLA B27 test too early, because if its negative its much easier for them to say its not AS, even though theoretically and going by criteria it shouldn't count. I have read somewhere (and I wish I still had the reference) that UK does have a particularly high proportion of false negatives on that test. I suspect it comes from the type of test they use - there are several different test kits and methods and the NHS is bound to be using the cheapest and least reliable. Also too, I understand that it can be a bit of a tricky test to do in the lab, and there are ways if you first appear to have a negative test to further test it to be sure. Again, given the frequency that most labs here would do it, I wouldn't count on the test result actually being accurate if it did turn out negative.

I'd also echo ineptwill in insisting on a rheumatologist referral. See the person you are down to see in the first instance, but whether they think you have it or not, you will still need to see a rheumatologist: if you do have it, for treatment (as GPs, and even specialist GPs cant prescribe some things), and if he thinks you don't have it, for a full rheumatology assessment.

In the meantime, those bloods the GP has done are a fairly routine set for suspected arthritis, so thats fine. As for whether you eat starch or not, I haven't figured out the answer to that. I would suspect you would need to go off it for quite a while to really build up the effect, but chances are that your ESR and CRP would still be in the normal range anyway, as that is not diagnostic for AS.

At the very least when you see this special interest GP, watch what he is writing, and make sure he documents your family and personal history, make sure he does (and records) some significant measurements (you can look up BASMI to see what is usually done) even if they are normal at the moment, and also if you get any kind of tendinitis (enthesitis) make sure he examines those areas too. If he checks fibromyalgia points, they should only be recorded as positive if they are very tender to light pressure, so don't make the mistake I did of commenting on very mild tenderness.

Thanks, that's really useful info.

I am going to keep pushing the "joint pain, joint pain, joint pain" as my symptom and hopefully he will also listen properly to my history and my family history. The GP didn't but then as she said, it's not her place to diagnose me, her job is to make the appropriate referral, which she has done, so considering she has a 10 min appointment and was already running 20 mins behind schedule by midmorning, fair enough if she didn't want to listen to me talking about every detail I suppose.

When I told her about my family history she said "With a definative diagnosis?" and I thought, this is my great aunt, she died aged 80, about 20 years ago and all she knew she had was a humped back and spine problems, course she didn't have a definative diagnosis of AS. As for my uncle, he has Alzheimers and doesn't even recognise his own wife, so not much point asking him about his back problems.

I understand her point about my flexibility but I don't know why she was so keen to jump to fibro, she didn't even ask me if I have any muscle pain or other related issues, or about any of the other symptoms of fibro. I can't help thinking that her mind went "fat middle aged woman with history of depression complaining of pains= fibro, but maybe that's too uncharitable of me lol). But it doesn't matter, she's referred me and that's all the counts at this point, so I will try to focus on that and not get stressed about how the appointment didn't go at all how I'd hoped!

I will do as advised and ask to see a rheumatologist whatever the outcome of this stage of things, thanks. I won't accept being told it's fibro without being thoroughly investigated first. Point noted about the fibro points, I'll remember not to be too wimpy about those.

Hi, Horsewoman:



Sure, she knows YOUR body better than You do!

This is yet another quack and gets this month's prestigious THEODORIC of YORK AWARD. I would not even trust her for a shearing.

The rest is just that YOU have already figured it out, and eating starch again is not worth the pain for the possibility of increased inflammatory factors. Over 40% of us never have elevated ESR or CRP and some of us actually have slightly increased ANA despite not having SLE and most are RA neg (seronegative). Why waste Your time?

The NSD helps, so find a Road Back physician in Your area and combine this therapy with another more effective one; treat CAUSES and don't just chase around SYMPTOMS.

HEALTH,
John

Thanks .

I already got the main thing I wanted- my family to face the fact I am sick. My mum came over this afternoon and actually asked me properly about it and made a comment about both her daughters being ill. I don't want her to be upset, but we all need to recognise I have my health situation too, and can't just be there any time to help our with my sister. I'd love to be able to, but I have my own kids, work and so on and need to take care of myself. Much easier for us to balance all our needs if we at first put everyone's genuine needs on the table .

My last visit, my doc did a Shobers test on me. He doesn't tell me what he is doing half the time. I found out what he was doing by reading, and studying. I don't know what the results were.

I would introduce your family to this KA website, let them read some stories. and they will begin to understand how deep this disease runs. And why other parts of your body are affected and how bad it can get. I have been realizing more and more how serious this disease is.

Re: those older family relatives with arthritis - do you have photos of them? Photos in my experience are really great ways to really show docs stuff. I've taken photos of rashes and stuff and they've actually looked at them seriously. Just don't take a whole album in - one or two of the most significant.

I understand the family concerns too. My mum always used to hate the thought that I was in pain, because I think she thought I'd inherited it from her. I was a bit reluctant then to open up too much. Chances are I've actually got this from my undiagnosed (and now passed on) dad though. Now I talk quite matter of fact about it all to mum, and she and I are much more able to share notes and commiserate without getting really down about it. I hope your mum and other family members get to that point - empathy and real understanding without overly worrying or panic too often.

I didnt mean to construe things the way I did, sorry. I can be so subjective when it come to disposition. The tape measure measurements really means nothing. I just wanted to show how important getting help is, especially early on.

The gist of what I meant is 15 years ago I was "normal". Then my trouble started and having gone on for all that time with no help AS has disfigured and crippled me. I was 5'11" 175lbs solid now Im 5'7" 158lbs mostly soft.

Its important that you use ALL avenues to get help and dont give up. When things in your body deteriorate there is no getting it back. You can be in agony for years with AS before anything shows up. I hope it doesnt take you the inability to breathe easily or the fact that you have no SI joints left on Xrays to get you help. By then its to late. Dont be discouraged by being jerked around. Only you know how you feel. There are far more wise people here about AS than I. Im sorry if I confused or mislead anyone. I did not mean to.

sorry for the frustration, i know how it can go, as i had a lot of frustration for years before finally finding the right rheumatologist. i think you have the right attitude of going to the specialists and not worrying so much about the GP, though still i know the frustration.

fibro: i was lucky that early on i went to PTs and a physiatrist that specialized in fibro and so they were able to rule that out from the start. but since it always came up with new doctors before it was ruled out, i read up on it and became as knowledgeable about it as i could. that and since i have all kinds of tendon issues, rare collagen disease (EDS) also always comes up and gets ruled out, so i've read up on those as well.

good thing, because the first rheumy i was sent to here in town quickly dx'ed me with fibro and EDS (through a few seconds of very aggressively squeezing my entheses which of course hurt) and when i explained why those had been ruled out over and over again, he wouldn't listen, through me back to the GP and then it took another 15 months before i could even find another rheumy who'd look at me. hoping your fibro label doesn't stick like mine did for as long as it did. all those years, all those doctors of ruling it out, there was no record of that.

becoming knowledgeable on fibro and EDS (if you have tendon issues) is important so you can talk knowledgeably about why you don't think you have those.

blood work: ESR and CRP are often not elevated for spondys, even when flaring, even when inflamed. i read that its because the entheses where the majority of the inflammation is are avascular structures; don't know if that is correct, but its what i've read. also, many of us flare, and so would only have the high inflammation at that time, thus another reason for ESR and CRP to be low much of the time. i never go for blood work when i'm flaring at my worst, as i can barely make it from the bed to the bathroom on those days, let alone leaving the house. thus, in between flares, my ESR Nd CRP are usually borderline "normal". but when i finally saw a good rheumy, he's the one that told me all of this, made sense. if they are elevated, that's helpful for a dx, but if they are not, inflammatory arthritis shouldn't be ruled out based on that.

ana and RF, if positive, helpful for lupus, RA, autoimmune, but if negative, doesn't rule out any of the spondys.

HLAB27: positive for 90-95% of AS but positive for only ~25% of undiff spondy. and undiff spondy still part of the spondy family, still similar and in many cases same treatments. but still if its negative doctors will take that as evidence of no spondy as rheumy #2 did.

rheumy #3 admitted that with my tendon problems that i had "enthesopathy" but when a CT scan of my SI came back showing osteophytes and "arthritic changes", he tried to convince me it was osteoarthritis. but based on all my other symptoms, that just didn't make sense to me.

do you have GI problems? if so, that's helpful in the dx of spondys.

do you have skin problems? rashes can also help nail down spondys.

dry eyes? or eye inflammation? again, eye inflammation goes with the spondys. dry eyes can point to inflammatory disease.

and family history: mine is like yours. everyone on my mom's side has had "arthritis" (newer term) / "rheumatism" (older term) and lots of inflamed stomach issues (gastritis, ulcers, stomach cancer, even without the nsaids) which i now know is part of our inflammatory disease. but everyone was always told to go home and take a few nsaids and so they did, til their stomachs couldn't deal. but now i realize its best to just tell them that my family all have inflammatory arthritis with GI inflammation. and the photos of family members, a wonderful idea given above.

as for touching one's toes: when my SI is flared, i can't touch my knees. but when not flared, my flexibility (after a morning shower of course) is the same as its ever been. nothing to cheer about, but nothing really "abnormal" either. the rheumy that dx'ed me understood that as well.

thus, i think finding a rheumy knowledgeable in the spondys is your best step.

but hoping the next doctor you are scheduled to see is also knowledgeable. prior to rheumy #4, almost from the beginning, my PTs, physiatrists, orthos, endocrinologist, chiro, all knew i had an inflammatory arthritis attacking my tendons and ligaments, and were all very frustrated that i couldn't find a rheumy who could see what they could see. they were my cheerleaders who kept encouraging me to keep searching for a rheumy who would dx and treat me for the inflammation. in the meantime they did everything else they could to treat the symptoms. and those things were very helpful as well. i think the fact that many of them saw me often got more data points and so could see what the rheumies couldn't observe if i went when i wasn't flaring.

in the meantime, keep doing what you are doing to keep the inflammation as low as possible, IMHO.

Thanks. And yes dry eyes and digestive issues. Though I am unsure about the benefit of mentioning the digestive stuff since IBS + fibro would be classic in their minds.

I also had a dx of reactive arthritis in 1996 soon after my SI symptoms started (I thought the SI stuff was due to pregnancy so never saw the doc about it). I had a livid rash all over my legs and then flared up with painful swollen joints, especially my hands. That got better after a few weeks but still could have been some kind of initial flare of inflammatory arthritis I would think.

I don't have standard typical AS symptoms so maybe it is undiff and the gene test would come back neg. Diagnosis is frustrating- it's like with gluten, if you don't have classic advanced celiac you get told you're fine.

But I also very much don't have standard fibro symptoms either. I don't have muscle issues at all except when my neck and shoulders are very bad, the muscles there tend to tighten up. But that's all.

That reactive arthritis diagnosis is important - make sure you mention that. ReA can turn into AS, or it could have been misdiagnosed AS in the first place. Whatever, it shows you already have had a spondyloarthritis diagnosed and that should get you somewhere. At the same time you talk about the ReA make sure you also add in that you had had the SI pain before that, but didn't see any docs about it.

IBS - yes, can very easily be written off with that, especially in the NHS and especially in combination with a suggested diagnosis of fibro. One way you could introduce it is by saying "I have GI symptoms of.... but haven't had any kind of testing or investigation for that so far, so I don't know if its just IBS or something else". They actually shouldn't diagnose IBS until they have done some testing to rule out IBD.

Thaks, I have made a note to make sure I mention the arthritis in 1996 (was a few months after the SI pain started and around the same time the IBS symptoms began.

I lay in bed earlier and worked on tracing where my pain is (as I'm in a mild version of the "sore all over" phase). My muscles are the bits that don't hurt. Joints and all around the joints radiating from them, and places where there are tendons etc. The places where the big, obvious muscles are are the bits that aren't sore.

I'm making a list of things to make sure I mention. Hopefully he will do a proper timeline history so I can describe the SI discomfort followed by gut symptoms and reactive arthritis diagnosis in 1996, dry eyes starting in 2002. Focus on how pain is centred on the joints, ribs hurting when I breathe, morning stiffness, plantar fasciitis since Dec 2010, joints that click, pop or make crunching sounds. When bad it is the joints as mentioned but amped up so it feels like my bones are throbbing and aching. Muscles are still fine then too, except the neck tension which usually follows the shoulder and neck joint pain being bad for a day or two.

Maybe it is not AS but I am convinced it is some kind of autoimmune arthritis type condition. Certainly, when I read here I think "that's just like me!" and when I read fibro posts I think "Oh that must be awful".

This perfectly describes my shoulder pain: "An inflamed nerve in the neck often triggers a pain that seems to come from the shoulder but doesn't really. The brain gets confused by the incoming pain signal and blames the shoulder, or the hand or both when the problem really lies in the neck itself or in the nerves that arise in the neck. This kind of pain is often accompanied by a sense of tingling or pins and needles in the hand." Hmm, what could possibly being going on in my neck that is impinging upon a nerve I wonder.... lol. One of the question marks in my mind has been that my shoulders, arms and hands hurt more than my back. But according to what I have been reading, the kind of shoulder, arm and hand symptoms I have is usually caused by a problem in the neck. Makes sense. So the whole "aching throbbing arms" thing I get when I am bad is actually coming from my neck. A friend of mine just messaged me saying her mum has AS and describes her pain in exactly this way. Hah, I feel better again now. I bloomin well do have AS and I can get back to feeling hopeful about the NSD instead of thinking I may have fibro instead.

I think fibro is the go to dx for most of them. Molly even just posted an article about how most of them can't even properly read our x-rays. Maybe that's why fibro is often the chosen culprit.

I also wonder about when NSD, exercise, and our other proactive efforts, have a positive impact on our test results. Do the doctors then go, "Ah well you don't have AS!" Like they would rather call it fibro than to be wrong, but rather be wrong than to give any credit to NSD. I've decided NSD is helping me, and damn what any doctor thinks about that. I'm not willing to undo my short progress for the piece of paper that names my ailment. I just want to feel better and squeeze life for all I can wring from it.

Hello, I'm sorry to hear of your pain and difficulty with diagnosis. Thankfully, your GP took you seriously enough that she is referring you to a specialist; albeit, not a rheumatologist.

Just so you know, I have a firm diagnosis of AS. I, too, can touch the floor when I bend over. When I was diagnosed, I could bend from the waist, knees straight, and put my hands flat on the floor. A lifetime of dance training and stretching contributed to that. The problem is that women do not always present AS the same way as men. Dr. Mohammend Khan, of Case University, acknowledged this in an address to the British Columbia Spondylitis Association in September 2007. And damage visible on x-ray is no longer considered, in international circles, the be all and end all of diagnosis. Women often are in their late 30s before that happens.

Go to the specialist with a list of questions - put a star beside the 3 most important to you - and give the entire list to the doctor to ensure something medically important isn't missed. Make a list of symptoms, do a pain chart, and go in with an open mind. Let the doctor diagnose you without your opinion on the matter. Doctors hate when we go in and tell them what we have without having received a firm diagnosis first.

Persevere. You will get the answers you need. Too many of us here have been in the same position.

Hugs,

Thanks. And yeah, 18mo of iyengar yoga, I couldn't touch my toes before that. I tried this morning first thing, could get to about a foot from my toes. If I was "starched up" I can barely bend forward at all because my neck would hurt too much. I got the impression she assumed I would have fusions in my spine if I'd had AS for 16 yrs, I guess that's what basic GP knowledge would teach her to expect.

I am coping better today. Reminding myself that whatever this disease I have is, it already is what it is, and whether the diet will work, that's already decided too. Nothing the doctor says, and no diagnosis, correct or incorrect, will change my life in that way. That helps. Still praying for a positive ESR or CRP though lol.

That is EXACTLY what my GP said. I'm in my 50's and have had stuff going on since teenage. My SI xray showed "minimal sclerosis" and GP said it was totally irrelevant.

Bleurgh!

I suppose at least having had the xray and seen that, you know what it means. But would be good if the doctor did too!

Just got my appointment letter through. I looks really good actually, it's called the musculoskeletal triage service. So they can see people within a few weeks, minor/ short term things can be handled by the specialist GP (insoles, injection for your bad elbow etc) or they can refer to hopefully the right person. Better than waiting months to see someone only to be told you need to wait months to see someone else, or alternatively, being fobbed off by your average ill-informed regular GP.

And it says you get a 30min appointment with time to "be listened to and involved in decision making". Music to my ears!

I'll call on Monday and book my appointment, after I've had my bloods taken and checked with the nurse how long it will take to get the results. I am also hoping to be able to call the GPs and get the results when they come in, so I have some idea what to expect.

Wow! that sounds like a great clinic! I know there are some areas that are doing really good stuff with initial clinic appointments, including places where you stay several hours and get seen by a number of different people in the team and get all the tests and xrays and stuff done on the spot (not rheumatology necessarily, but other specialist services). Just wish they would roll out that kind of programme elsewhere.

I wish you all the best for it. Do take someone else along with you though if you possibly can who knows you well (partner, friend, mother, etc). It does make all the difference to have another pair of ears as well as someone who can remind you to say important things.

for years, tried to focus on the gastritis and downplay the IBS as back when those started, IBS was still seen as a nervous condition.

fast forward to now. find yourself a good GI doc. one who will do a colonoscopy up to the ileum to look for inflammation and ulceration. you may even have the beginnings of IBD and a colonoscopy would detect that. at the least, you probably have inflammation in your intestines, most likely in the ileum. i've read several times recently that all spondys have this inflammation even if they are GI symptom free. if you have inflammation in your intestine, that can help with a dx of spondy. and can be treated.

also see if you can find a naturpath who will do stool sample testing to see if you are missing any of your good bacteria, if you have bad bacteria or candida, etc in your stools. i was found to be lacking lactobacillus and so my naturpath and GI doc put me on probiotics. has helped the IBS a lot.

my rheumy thinks all spondys start in the gut. he (and i) believe in leaky gut. the idea that the bad bacteria are outcompeting the good bacteria. allowing for inflammation of the gut, allowing for it to become "leaky". allowing for food allergens to pass through to the blood stream. allowing the body to elicit an immune response and produce inflammation (in our joints, etc). my naturpath also had me get blood work done to analyze for food sensitivities and apparently (cow's) milk casein and egg (protein) cause me problems, so i stay away from them as much as possible. no more 3 cheese omelets for me!



SI joints seem to be a common problem with spondys. and when i've had my worst flares, i've had a horrible rash on my legs as well. my rheumies have said its typical of "autoimmune" responses. my hands were my first problem, along with my upper back. then the SI joint 2 years later. as you said, could be reactive arthritis, but could be an initial flare of any of the spondys. i have a friend who had reactive arthritis to a misdiagnosed strep infection, but was treated quickly and resolved itself.



tell me about it!



i have bone spurs in the facet joints of the left side of my neck. when i flare, that area becomes inflamed (like the rest of my joints) and causes even more nerve compression than what happens day to day. causes the upper back and neck muscles to spasm something terrible. always low level spasms due to this problem. ice and heat help. PT and chiro help. ultrasound helps. zanaflex helps. stretching helps. walking helps. sleeping on my back with a thin feather pillow squished under my neck helps. sitting hurts. not sitting helps. sitting only on flat chairs, my swopping chair, in my recliner, helps.

Thanks for all that info . I think there is zero chance of a GI doctor or colonoscopy since I don't really have significant GI issues now I am off gluten. I mean, I have enough to know it's still not quite right, but not enough to have testing on the NHS.

I agree totally about the gut and I know that gluten has played a role in my illness. I don't know what came first but going off gluten helped a lot, though then the joint pains started to gradually worsen again, although the other symptoms (eg wheezing, GI stuff, restless legs etc) has mostly stayed away. Interesting that Carol Sinclair much improved for a while after going off gluten but keeping in other starches, and then worsened again and had to cut all starches. My experience was just the same.

I have done a lot of stuff for gut healing- glutamine, probiotics, bone broth, ferments etc, will keep at it.

Reading up on autoimmune rashes, the leg rash does sound more likely to be that than to have been a virus, with it being localised like that. I will make sure I mention it. I am not certain I have AS but I am certain I have something autoimmune going on, and certain it's not fibro.

i thought the same thing about my IBS and for years just focussed on the gastritis with the GI docs, only casually mentioning the IBS. turns out they were as concerned about that as the gastritis. and most of the time its under control. so you never know, if you find a good doctor, i think he / she will care.

but, another tactic, around here (in the U.S.), they want us to have fairly routine colonoscopies: more as we get older, more if one has IBS or other types of bowel issues. so i'll ask, could it be time for a "routine" colonoscopy? then if it is, maybe you could convince a doctor to make sure he / she goes all the way up to the ileum, which may not be routine, but while they're in there (and you've done the not so nice prep), why not!

on the other hand, if you've managed to figure out how to manage it, as i had mine for many many years, then like i did, you could just continue that way. i only had to get more serious and involve the doctors because what i had been doing that worked, stopped working. but for me the secret was to add in the probiotics, and i see you are already doing that.

on the other hand, if you need the GI piece of the puzzle for diagnostic reasons, then i'd try to push the "routine" colonoscopy angle. but that's just me.

as for the rash: as i found out from the dermatologist, that type of rash can be from many causes: everything from allergies to autoimmune. he even did a puncture biopsy and it came back inconclusive as an "exuberant immune response", which means either allergies or autoimmune. but because it was at the start of a bad flare, was joined by dry eyes, and inflammatory joint issues, and i hadn't been exposed to anything new (i even resorted to switching to just hypoallergenic dove soap and pure aloe on my legs, they thought autoimmune, not allergies. especially since over the years its always the same pattern (start of a flare). but, a bacterial infection like strep can cause the same thing too. so, its not so much the rash that determines the cause, but rather the rest of the puzzle pieces as well. for me, its just one more piece. just like dry eyes can be due to a number of causes, but for me, its another puzzle piece.

looks like you're putting your puzzle pieces in place and more importantly figuring out how to help yourself.

you'll find a doctor who understands what is going on. it took me 5 rheumies and a dozen years, but finally it happened for even me, with not such classic symptoms, or at least not symptoms that most doctors could recognize. but good doctors that specialize in the spondys understand undiff spondy, AS,and the other spondys.

Thanks, that's interesting. I definately don't think there is such a thing as a routine colonoscopy in the UK lol.

It worries me when people talk about needing to see several different docs before getting a sensible one. I'll just have to see whoever I am referred to, and then that'll be it. Will just have to cross my fingers!

Got my blood taken this morning, was great, I have terrible veins so am used to lots of poking and prodding, failed attempts, other people being called in to have a go etc etc lol. It was my favourite phlebotomist, first try .

Also just had a phonecall from the musculoskeletal triage people, my appointment is Feb 7th .

I think this is the doctor I am seeing lol http://www.therhinos.co.uk/rugby/coaches/15513.php

that may actually be a good thing

from my (limited) experience, doctors used to working with athletes seem to have a good understanding of what is "normal" and what is "atypical" in terms of "healing". its been these types of doctors who pushed me to continue going from rheumy to rheumy until i found one who also understood; for me, my tendons should not have been damaged so much so easily and taken so long to heal, it was outside the range of "normal" and it was these doctors who knew that by comparing me to most other people. the only other step was to rule out EDS (rare collagen disorder) and that was easy since i'm not the least bit hypermobile in the EDS sense.

good luck with the appointment.

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.

i didn't look at this carefully, but on quick glance it looked like it might be helpful:

http://www.glutenfreechecklist.com/o/key...CFUSo4AodR0eLQg

Thanks .

Most of the dark chocolates for sale in the UK say "may cobntain traces of cereal" or something similar, because they're made on the same lines as products containing cereals. The Lindt says only nuts and soy so you would expect it to be ok, but their website says http://www.lindt.com/ca/swf/eng/information/faqs/ (scroll down a bit). I have no idea why they think it is acceptable not to list gluten or barley malt as a possible contaminant on the packaging.

Maize/ corn- I get the same reaction to that as I do to gluten. It was the first intolerance I noticed after stopping gluten. Then oats. Then I went grain free.

Horsewoman,
do you belong to the UK Coeliac society? I do, and get their annual foodlist, which lists definitely safe stuff. Must admit I don't check it very often as I usually rely on package labelling or known foods.

It is possible that if your package didn't say that it contained gluten, that it didn't. I know with some other chocolate manufacturers that produce in different factories, it matters where that particular bar is made. Mars bars are a classic - the different sizes all have different ingredients even though they are the same thing, and some sizes are gluten free and some aren't because of which country they are made in.

As I said, I first go by package labelling, but if I am not sure, then I check with the Coeliac society gluten free food guide.

Re: the Lindt stuff - I'd do a really strong letter to them asking to explain why it says "contains gluten" on the website but not on the packaging.

Not quite sure where UK is at for labelling now of imported products. I find it much safer now than when they were using the Codex standard (which allowed low levels of gluten in labelled gluten free things) as I was sensitive to traces. New labelling where gluten free really is gluten free is much better for me.

Interesting that you are also sensitive to maize. I'm hearing of more and more people with coeliac disease who can't handle maize at all with the same symptoms as gluten. I'm actually worse with maize than gluten now. Rice is usually fine for me (though I don't eat it often), as are potatoes (again infrequently) so I don't think it is starches in general that upsets me. Low starch diet works well.

Since it says on the Lindt website that the dark chocolate bars are made on the same line as bars containing barley malt, and that they cannot be stated to be gluten free, I really think it should have barley malt or gluten listed in the "may contain traces of" section on the labelling. I tried to email them but it asked me for all kinds of product codes etc so I gave up lol. I also found celiac sites where people said they reacted to it before finding out it has possible cross-contamination. It may not have been enough to affect me, who knows, but I am cutting it out now for that reason and because it contains starch, so I'll see what happens.

I do belong to Coeliac UK, but as I am also severely intolerant to corn, and now grain free, it doesn't really apply much to me anyway. I agree with the Glutenology people, that grains are not safe for celiacs. I have found wheat or barley grains in Sainsburys millet, and even some rolled wheat-type grains mixed into a bag of "Allergycare" branded buckwheat flakes. I feel better off grains anyway, and subscribed to the paleo diet even before discovering going low starch helped so much with my joint pain. But weven sweet potatoes trigger joint pain for me.

I am really glad about the new labelling standard. Will make things clearer. Pringles can't get away with saying "gluten free wheat starch" any more, which is good because they glutened my friend. Waitrose labelling I find difficult, as they mark everything that is from wheat, so it'll say "glucose syrup from wheat" for example, but I don't really know whether that should concern me or not. Probably because I just don't want to hear that I can't eat practically every dessert they've ever made lol.

I can, for a week or two at least, live in hope that it has been glutening me and that I will feel better soon.