Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and FM four years on...

I logged on earlier and realised that I haven't posted for over two years...where does the time go!

When I was posting before I was going through the 'trying to get a diagnosis' phase. I'd probably seen a lot of rheumys, GPs etc. and had copious tests, scans etc. done.

Well, the upshot of that was a diagnosis of fibromyalgia. I have always felt uncomfortable with this diagnosis, and four years on from when I first became ill, I'm still equally baffled. I've been told I have anxiety disorders and have been referred to neuropsychiatrists, psychotherapists etc. All nonsense in my view!

I thought I'd come back here because AS was the first diagnosis which was suggested - my symptoms matched almost perfectly - back and joint pain and stiffness, heel pain, tiredness, pain sitting down, pain better with exercise, waking up with pain and stiffness in the second half of the night etc. etc. The problem was of course that all the tests, scans and x-rays I had done were all negative. This coupled with the fact that although my joints flare up and get red and warm to the touch, they don't really swell up, meant that AS and other rheumy disorders were ruled out.

Having got the FM diagnosis (well, not sure anyone's committed it to paper, possibly 'widespread pain disorder' was as far as it got!), I still find myself coming back to AS - it's so very close to my symptoms yet seemingly so far from a diagnosis. I have asked time and time again why, if FM is essentially a psychological/neurological disorder why I get so much clicking and cracking of the joints, why do my joins flare up and get red and hot etc. These symptoms all seem visible and physical to me.

I've had every FM medication going I think - everything from antidepressants to painkillers...amitriptyline, duloxetine, fluoxetine, gabapentin, tramadol, pregabalin etc. etc...all of which have offered no benefit at all.

So, I very much still feel all at sea with this...not really sure why I'm posting this...probably because despite everything, I still come back to the AS!

David

Hi David. Neither Dx is fun. A.S. is painful and so is Fibro. I have both and they irritate each other. Some of the clicking or popping you might here is a build up of lactic acid in a joint, causing it to crack, snapple, and pop if you move it a certain way. Cause, too much lactic acid? How to get rid of it?

There are a few on here who have both as well and have tried the whole gamut of Fibro medication to no avail. The only thing that helps my Fibro is pain meds and cannabis cream. I haven't heard of anything else that really helps Fibro in the long run. I know if the barometric pressure is stable I don't flare with my Fibro.

I'm sure when you were on here before you learned that it doesn't show up usually in blood work nor MRI's for quite some time. If you have A.S. it will appear at some time so you have solid proof then. Until then I would follow what some of the people on here who have had success keeping their A.S. in check. Best Wishes

Hello, David:

The symptoms You have listed in Your signature are ALL AS and ONE or very few FM; You have every right to be concerned about Your misdiagnosis! FM is one of the most common misdiagnoses of AS--welcome to that club!

HLA B27 negative?

HEALTH,
John

My 'case' reads exactly like yours David.

If it hadn't been for a Scottish walk-in clinic physician I happened to see first (3yrs ago) about agressive backpain that had lasted 6+ months, who tested me (positive) for HLA B27 and thereby mentioned the slight, ever so unlikely, most probably not, chance that it could be AS, I would have been stuck pondering only the Fibro diagnosis other physicians offered up, and not gotten to where I am today, because of 100s of hours researching AS and inlammatory disease.

I still have no verifiable signs of AS, but absolutely all the standard symptoms, many spread over a 20 yr period, accumulating in a huge mega flare 3 yrs ago.

Thanks to this site, and others around the web, I'm slowly (but steadily) improving, by 'treating myself' as if I DO have AS, no matter a diagnosis or not.

Worth looking into

/Kristine

Thanks so much for your replies - I think what frustrates me is that I feel like a perfectly intelligent human being but I'm made out to be some sort of lunatic.

I was referred to a psychotherapist because the GP thought needed help to come to terms with the FM diagnosis - this wasn't the case at all - I'm quite happy to accept FM if someone can explain the other symptoms, which as John says, are not a feature of FM. So far, no one can do that. The psychotherapist thought I had an anxiety disorder (i.e. you worry too much so your symptoms are all in the mind etc.) so I got referred onto a neurospychiatrist who, after waiting 18 months for an appointment, said he thought I had a severe anxiety disorder - I felt ready to be admitted to somewhere! All quite ridiculous.

Interestingly, I have never persuaded anyone to do the HLA-B27 test - rheumy and GPs wouldn't do it because they didn't think there was sufficient visible evidence of AS to make it worthwhile (is it a very expensive test I wonder?!)

I'd have settled for a diagnosis of 'probable AS', or 'possible inflammatory arthritis' rather than FM. Sometimes I feel like saying to them, why do you treat it as if it was AS and see what happens!

Thank you again - I must seem like a terrible whinger!

David

Hi David,

I haven't posted on this forum or even visited much for years now. But I stopped in for a look around tonight, saw your post and thought it worth sharing my own experience that was/is so similar to yours.

Shortly after I started having my first symptoms, my GP at the time suggested AS and to his credit started getting me all the tests I needed to determine. I also saw a rheumatologist, and then a second one when I asked for another opinion. Though my symptoms are very close to AS and I have few FM-like symptoms, because all the test results and rheum opinions were negative I was given the random diagnosis of FM.

Throughout the process I asked lots of questions and pointed out various things, regularly taking doctors back to the root of my current illness, which involved a serious flu that was going around. And throughout the process I was made to feel like there was something wrong with me, like it was all in my head. And it's not the first time this happened to me. In other experiences with doctors in the past dealing with complicated health problems (which they were not able to solve and I figured out on my own or with the help of alternative practitioners) it has been the exact same way. They made me feel like it was all in my head.

The whole process of dealing with doctors and being concerned about getting a diagnosis, etc was ending up being worse for me than my physical ailment. So, long story short, I gave up on medical doctors aside from minor simple things and the occasional prescription for muscle relaxants. I have no interest in any of their toxic potions they peddle anyhow, and thus don't care for a diagnosis.

I'm currently more or less just living with the pain, which is generally mild to moderate and hoping to find the time soon to take some serious action on the natural health front to try and kick out whatever is in my body that's causing this illness. And trying to stay strong along the way.

Not sure if this helps at all. Just wanted to share.

All the best.

Colin

Hi David,

your story sounds very much like my own story, and like you I have not been here for a very long time.

My own story is slightly different but I have had 3 rheumies trying to tell me that it is fibromyalgia. That to me is a nonsense diagnosis.

Like you, I started out with a doctor investigating for AS. I had the stiff shoulders, pain in the butt, plantar fasciitis etc. In the beginning I did not have the inflammatory markers except for the ANA which was a low positive.

Over the last 10 years alone there have been many changes... to cut a long story short, when I moved from Sydney to Canberra I was sent to yet another rheumy, only this time he did all of the blood tests to rule out different things. By this time my ANA was on the rise, my RF was on the rise, I had bone scans that showed the inflammation, and that included the bone density scan. I got a diagnosis for MCTD which was better than FM but my doctor called it a nothing diagnosis and I called FM a nothing diagnosis. My diagnosis recently changed to that of RA. This was with a twist because after we moved again I saw a new rheumy and he told me it was fibromyalgia, said I did not have RA... and I was furious with him (that is another story). So my doctor sent me to someone else for a second opinion. Needless to say I am back to RA and underlying FM.

The truth is, we can have fibromyalgia as an underlying condition as well as the auto-immune disease. What is frustrating is when a doctor only recognizes one part of the situation, and refuses to treat the auto-immune disorder. This is what happened to me.

With regard to FM, I have no respect for some of the drugs such as amitriptyline or Endep. It is a waste of space and does nothing as claimed by the rheumy. What did work for me a few years ago was Lyrica and Neurontin but I think it worked best when I was also taking Zoloft. I am actually thinking of asking my doctor to place me back on that medication to see if it will once again make a difference.

I have just gone through what I think was an FM flare. I felt like I was burning up in my upper legs and specifically around the pelvic girdle. I was able to come out of the flare by taking a strong pain killer and getting some extra rest time.

If you really do have FM then exercise is supposed to help, but I have never seen evidence that it did help. What is worse, the exercise issue is a catch 22 because it is hard to exercise when one hurts, especially in the feet.

The only thing I can suggest is that you try to remain positive and I know that is very hard. It is also good to not focus on the word pain, and I do this by trying to use substitute words, and banishing pain as the "p" word. This is all to help with the frustration of not being able to get a satisfactory diagnosis.

One other thing, I have fractured my coccyx twice and the original pain was associated with the first fracture, and again with the second fracture only it is worse than when I was a 22 year old. I had a bone density scan a few years ago, and was surprised that it noted the bone activity in the sacro-iliac region... yet I do not have a diagnosis for AS, probably because I am not HLA-B27 positive.

There are a lot of overlaps when it comes to auto-immune disease and this is very frustrating.

Hang in there David because you are most definitely not alone... except of course we are separated by distance.

David, here in Australia the test for HLA-B27 was covered by Medicare. The rheumatologist had to order the test. Only one rheumy has ever ordered the test, none of the others have specifically mentioned AS.

Like you, I have symptoms that are suggestive of AS.

I am wondering whether you have had any of the other tests such as ANA, ESR CRP etc.

Do you also have gastrointestinal problems? I've had constipation problems since I was a kid. Started with IBS and gastritis at age 29/30, then the arthritis kicked in at age 35.

Also I get skin rashes when I flare badly, mouth sores when I flare, dry eyes when I flare, a little bit of psoriasis when I flare.

The GI inflammation and joint inflammation flares too, but there's always a background as well.

Really bad enthesitis where I tore tendons and ligaments and had all kinds of tendonitis was a big part of my problem. Enthesitis is one of the hallmarks of spondyloarthropathies.

My joints don't swell, not to the visible eye. But they do get enough fluid in them that that makes some of my joints a bit loose and unstable and misalign; PTs and then chirps helped me with that. Rarely will a joint become read, very rarely.

I'm HLAb27 neg, RF neg, ANA neg. Even my CRP and sed rates are never impressively high, usually borderline high, but within normal limits. Though too I don't get tested when I'm flaring, as I can't even leave the house during those times.

None of my scans have been impressive either. The scans do show degenerative changes in my joints, but radiologists often tried to chalk it up to "normal" aging. Even my osteopenia, which now we know is due to the inflammation was not seen as a symptom, until recently by my good rheumatologist. One rheumy tried to convince me that the arthritis in my SI joint is OA (BS). I have OA in my knees, I know how that feels. OA doesn't flare like inflammatory arthritis does, for one thing.

For the first dozen years or so, no rheumatologist ever asked me if I had GI problems. If they had, it would have been "BINGO! You have a spondyloarthropathy!" Instead they just said "not enough evidence of inflammation. (BS, all my orthopedists, PTs, physiatrists, even my endocrinologist told me I had an inflammatory arthritis) We think you have Fibro. (BS, I have none of the symptoms of fibro) We think you have EDS (I'm not hypermobile, more BS)."

And almost always, my written reports claimed that I seemed "nervous" or "anxious". I think they knew better than to suggest I had any psychological problems. If I have any "issues" now, its because of how they treated me.

Anyway, my gastroenterologist was helpful. He found inflammation and small crohns like ulcers in my ileum. Though no one seems to dx anything unless its full blown crohns or UC. I hope in the future doctors realize that even this level of inflammation and ulceration is a hallmark sign of spondyloarthropathies.

So, I got tired of the run around. Got tired of rheumies trying to tell me I didn't have an inflammatory arthritis when all my other doctors (except for my GP) were telling me I did. Tired of not getting treated.

So, I flew down to a doctor, who's papers I had read on undiff spondy, in another city, in another state. Got dx'ed with undiff spondy. Used that letter to get into a good practice up here.

So, my really good rheumy now, first gave me methylprednisone for my flares. It was a miracle! but of course its not a good maintenance drug because of its side effects. But it was nice to no longer have to scream in pain whenever my SI joint would flare.

We tried for 2 years to do it with diet, probiotics, supplements, and pred for flares, but that just wasn't enough.

So, we started Humira in June. My second miracle drug! Life isn't perfect, but its much better. I did flare big in august like I always do, and took pred in addition to the Humira. I've flared a bit through the fall, but always manageable. Haven't needed pred since august.

Hang in there, you'll find someone to diagnose you properly and treat you properly. Don't let them convince you that you are "crazy". And don't let them make you crazy; that was the challenge for me.

I had come so close to disability, that I had no choice but to find someone who would treat me.

When I did finally find doctors to help me, they were much more interested in treating it, then in naming it.

Even now, I'm pretty sure my official diagnosis is simply, "spondyloarthropathy". But here in the United States with BC/BS insurance, that works for a biologic. Well that and the fact that a NSAID (Aleve) worked but gave me side effects, I had tried a whole slew of NSAIDS but couldn't take due to side effects, and that prednisone works so wonderfully.

Maybe there were some other boxes my doctor had to check, but I'm finally on a biologic and getting some of my life back.

Just wish we had gotten here a dozen years ago; so much time lost due to the pain and disfunction.

Thanks for all your replies - I certainly try to keep positive! Not always easy, but I'll not be beaten by it.