Whenever I have read about how diagnosis for fibro is made, I see that there is no definitive single test, like AS, it is done by a score, a series of questions, points given for this symptom or that, and even so, a doctor makes a judgement call about which criteria is the most important, and doctors can and will disagree. Is that not correct?

I know that it can be kind of a catch-all, if a doctor can't figure out what is wrong with a patient with chronic pain, they may just pronounce them with fibro, so as to get them out of their office...

But for the same reasons, it seems just as hard to definitively rule it out, that's why I am surprised to hear that you have had more than 34 doctors pronounce that you absolutely couldn't have it.

i think the reason doctors might initially think to consider fibro (for me and other spondy patients) is for two reasons:

1. tender points (from my understanding) are essentially where some of our entheses are located. so how do you decide if its tender points or ethesitis? the rheumatologist i saw right after the one who proclaimed fibro very quickly said the points should only be pressed with 4 kg of pressure, then demonstrated 4 kg of pressure to me. i was surprised how light of a touch that really was and that didn't bother me at all.

http://www.fmaware.org/site/News2?page=NewsArticle&id=6263

2. when we go in and complain about pain in multiple areas, it can initially sound like all over wide-spread pain that's classic for fibro. but if the doctor then gets the details and finds out that its the left achilles heel and the right hamstring tendon insertion point, and the SI joint, or other times its the right Plantar fascia, and the left wrist, and the SI, then it sounds less like fibro and more like spondy.

then when asked about sleep and fatigue, that really could be either. but those aren't big issues for me. for me its clear that severe pain interferes with sleep but in between flares when i don't have anything acute going on, i sleep quite well. and most of the time, fatigue isn't a big part of my disease. so those two things go against fibro.

and then when really its either tendonitis or torn tendons and ligaments and the SI joint that are the big problems, and the spinal damage and the osteopenia etc, then it looks even more and more like the spondy that it is and unlike fibro. fibro doesn't cause tendon / ligament damage or even tendonitis that i am aware.

my understanding too is that fibro will give all over wide spread muscle pain. i'm not really sure what that pain is supposed to feel like, but my muscle pain has been limited to buttocks spasms in response to the inflamed SI, lower back spasms infrequently in response to bad SI inflammation, and upper left back/neck as it turns out only when ribs are subluxated (now that the chiro has put them where they belong, those spasms are a lot less frequent). why its always been labeled myofascial pain by everyone rather than fibro, because that pain has always been localized (to a few specific areas).

and my pain responds to nsaids / cox2 inhibitors and prednisone. fibro doesn't is my understanding. early on, we didn't know about pred, but we knew that nsaids and cox2 inhibitors worked (just couldn't deal with the side effects).

its too bad the tenderpoints are essentially at the entheses, think that's what trips doctors up the most. but apparently that 4 kg pressure thing helps differentiate against the two.

got curious about my impressions, so did a little bit of searching and found this paper: i think this is really good for trying to distinguish between fibro and spondyloarthropathy.

entheseal spondyloarthropathy

as you said, can be tricky, so how do they differentiate. seems like the big thing is the response to nsaids.

but the info in the tables useful too.

think i will post this separate, others could find it useful too.

Sue, I think you and I have very similar stories and problems. I'm just really struggling with how to get rid of the fibromyalgia diagnosis at the moment. I'd love to read the full text of that entheseal spondyloarthropathy article (the link just threw up the abstract for me) because I think that the response to NSAIDS is the clincher for me. I don't "ache all over" or have that overwhelming fatigue that goes on for ages - yes I do get tired, but I can usually get over it with either being a bit more gentle on myself for a while, or getting better pain control. And I did get a really major improvement when I decided to self treat as if it was AS by taking NSAIDS at full dose regularly. It does seem they always want to hit on the easiest diagnosis first - if those tender points hurt then it must be fibromyalgia. I'd rather they said it looks like enthesitis, and looked more closely for other spondy evidence, and only when nothing else could be found call it fibro.

hi! send me a PM with your email address and i'll email you the pdf of the article. i have access to the full article because i'm at a university that has an on-line subscription to it.

it took me 15 months to be able to get in to see any other rheumy in town after that fibro dx and the 2 rheumies i wanted to see wouldn't even take me. so have spent the last few years going to rheumies who hadn't been able to help me. so finally in frustration, went out of state. now the frustration is figuring out a way to get the SI and L-spine MRI that the rheumy in philly wants, but one step at a time.

if i hadn't been to a number of other doctors in the past who taught me about fibro and explained how they ruled it out, i probably would have just accepted the dx, and been stuck not treating the inflammation.

the really funny (well, not ha ha funny, but ironic funny) was that in my frustration within those 15 months, i called the local section of the american arthritis foundation for help in navigating the medical maze and they told me "well if you have fibro, then we can't help you, you need to go back to your GP" and when i tried to explain, it fell on deaf ears. that was quite a blow, when an organization that i thought was supposed to be a support network failed me, especially since kat is always saying how helpful her local section is. i think i just talked to the wrong person.

i'd love to share the things i've slowly found to be helpful in navigating all of this. though obviously i'm still a novice at it.

not understanding, why couldn't you and they consider that you could have both going on at the same time? Or a combination of them?

Why would someone need to NOT have fibro in order to be treated for a spondy disorder?

Are they mutually exclusive?

My opinion is that regarding all these names and definitions that are given by humans for diseases, and the also-human tendency of thinking that our illnesses will follow and fit neatly into a nice human-defined category, is well, a problem in itself

cemc

I am not advising that you do this. As you know I am even behind you, not had one scan yet, nor a current x-ray. But one thing that has got them all moving in my case was a letter I sent in stating that I do not believe I have fibromyalgia and that I believe I have a reactive form of arthritis.

I said since you are refusing me tests I want a written explaintion as to why you are so sure I do not have a reactive form of arthritis and and I said I want a written explanation as to why I have been refused tests, and that saying because I am a carer will not do.

I told them that since Fibromyalgia does not affect the sacroiliac joints I want a written guarantee that my sacroiliac joints are not going to suddenly become more damaged. And then I said I am now going to have to pay for tests to be done myself and if they come back positive will I be able to get a refund and compensation for all the messing around I have had to do.

I told them that I want no more gut shreading NSAIDs, because the diet is working and if anybody within the NHS will support me with the diet, that will be very much appreciated. And I have told them that I do not want any more mind altering medication like the antidepressants they have been giving me because all they have done is give me confused thinking, a symptom I never had until I started listening to psychobabble and tsking stuff I new was no good for me in the first place, And this isclearly what haslead to the lead to a wrong diagnosis of fibromyalgia, and if it is not then I need them to prove it.

I have told them that any more remarks that I need a psychologist will be taken as an offence, abuse even, and before suggesting that I do I will expect them to have journals available to back up everything they are saying. I even said I want journals to back up everything they have said about me so far. None have arrived, are we surprised

And I have told them all that I want all of this in big bold letters attached to all my files used by the NHS

I said I no longer wish to communicate with any doctors on any level that do not believe me and that if they do refer me to another doctor of that ilk I will regard that as deliberate humiliation and that I now want a Rhumatologist who is willing to do all the tests I need so that we can prove one way or another what is actually the matter with me

Now, honestly, I am not telling you to do this. Right now I am well enough to handle this, thereis no way I couldhavedone this in the past. But i have posted this anyway so that you might see that these people are not so high and mighty that we can go through life hobbling about feeling sad and shameful just because so many NHS workers are lazy or so uneducated that they have no idea what they aresupposed to do

I was very afraid to speak to any of them like this, mainly incase they struck me off, but they have not struck me off, instead they have decided to get their finger out, several commenting, saying I am right, and happy to see their colleagues being told

Don't forget I am not doing as well as you at least you have had a scan but i want you to know these folk are not any more important than what the patient is. 'i pay my taxes' is my new well over used one liner

Love Joanne

Thanks Joanne for sharing your experience. At the moment one of our two GPs is good, and I think he is on my side. I've waited this long, I can wait a little longer to make sure things get done in a way that doesn't get them all fighting against me. I do have some ammunition up my sleeve that I can use if necessary, but at the moment I just have to wait until the new year to see this doctor and see what he offers to do first. What I am trying to do is a bit of background information gathering so I can ask the right questions and make sure that what happens works for me. I backed off for a couple of years and so far it has paid off in both these new doctors realising that I am not just a nuisance patient. I'm also getting quite a lot of help with getting the pain relief right, so that has to be good.

no, agree, some people here do have both.

and agree that even if one has fibro, that shouldn't stop them for being treated for spondy, if they have that.

that's why as you've experienced too that the whole experience can be so frustrating: so many doctors not even trying to treat the illness.

another thought: if one has pain at the entheses / tenderpoints and nsaids make the pain go away, that wouldn't happen if the pain were from fibro. you'd still have the pain. nsaids would only relieve the pain if the pain were coming from inflammation. i think.