Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 3rd opinion????

fibro? i've read in several studies that fibro is a common misdiagnosis for AS and a number of other diseases.

for 10 years now, doctors initially think fibro for me until they ask deeper questions and then always rule it out, i think over the years about 20 different doctors have ruled it out. but recently, a rheumy wouldn't rule it out after his initial statement, then the next rheumy told me that i do not have it but would only write on the official report that i do not have 11 of the 18 tender points and do not have the overall muscle pain and fatigue. its like he didn't want to correct the first doctor even though he disagreed, so be careful with that. from everything i've read, i just don't think i'm reading about myself when i read about fibro, so i tend to agree with the majority of the doctors over the years instead of the one doctor. i know the one could be the one who is correct, but in this case, i don't think so.

i'll just share why doctors think i have it upon first impressions and then why they rule it out upon further inspection.

why its considered:

at first glance, i have pain over a lot of my body these days and i am tender at the tender points.

why its ruled out:

i don't have trouble sleeping unless a specific pain keeps me awake or wakes me up. and more often, its that i fall asleep but SI or hip or lower back pain wakes me and then keeps me from getting back to sleep. fibro is supposed to affect your sleep or quality of sleep, and then that causes pain. how does one know if it is the lack of sleep that causes pain, or if its the pain that causes lack of sleep? i feel i've been able to tease it apart for myself, and my doctors agree. for one thing, i've found ways of sleeping that keep things from becoming irritated overnight so i don't wake up (sleeping with an icepack under the SI, using a flat pillow for my neck, knees over pillows for my lower back...things like that.)

i may hurt in a lot of places, but they are very specific places. and for very specific reasons. the plantar fasciitis from standing, the SI or buttocks or upper back pain from sitting, the neck pain from having my neck turned for too long (anymore any time is too long unless its for a second), the wrist or thumb or finger joint pain from typing, etc. i get the impression that fibro just hurts. i could be wrong here.

when i get to the point in my day where i've sat too long (and too long is variable depending on how good or bad the SI or back was to begin with), or done something else for too long, the pain starts to drain me. but if i can get rid of the pain with either a bath if i'm home, or an ice pack or heating pack if i'm at work, then the tiredness starts to wane and i gain back more energy. do you find that? i get the impression from what i've read and from what doctors have told me, that with fibro, you're just wiped out.

i get the impression that the tender points of fibro are the same as the entheses. i think there is some controversy as to how hard you have to press to decide its fibro. the one rheumy that said fibro, pressed very hard, and it hurt a lot. the second rhuemy pressed very gently and there was no pain, my physiatrist presses somewhere in between and it hurts somewhat. but i think if you press on inflamed entheses, it would hurt. so based on the pressing on tender points, doctors might rule fibro in or out depending on their interpretation.

so these dx's can be difficult to pull apart.

i also know it can be challenging to dx AS in its early stages. that's what many people here say. that's what a lot of my reading says. and if i have AS, then i'm also an example...time will tell. but there are people on here for which they are definitely living examples.

why is it challenging?

there is no definitive blood test. not everyone with AS has the hla-b27 marker. most ASers have low ESR and low CRP (in a study of ~160 patients, the average for both of those were less then 10). ASers are RF negative.

i get the impression that often the pain can precede any changes that would show up on xrays or in imaging. however, if you had mild changes on your xrays, maybe an MRI would show something for you. it certainly wouldn't hurt to have one done. people here also say a nuclear bone scan should be done to look for the inflammation.

i think the advice that janet gave me of being careful with second and third opinions is a good one to bear in mind. it seems like once i got the fibro label from the first rhuemy, it was really hard to even get into another rhuemy, even though so many other past doctors had ruled it out.

and then, at least for me, though i don't feel like i can relate to fibro when i read the symptoms, but do feel like i can relate to AS when i read those symptoms, its always possible that its something else entirely different. i had a physiatrist in virginia, before i moved, who thought i had a rheumatic disease that they may not have identified yet, and my chiro says that i should also consider endocrine problems, so i will be finding an endocrinologist soon and a rheumy more knowledgeable in AS or at least one who will take the time to thoroughly listen to my history and not send me packing so quickly.

sue

Oh Yes,

I have the trigger points... and if you have had someone press on those trigger points and you have Fibro you are going to know it.

Lisa

I used to be addicted to exercise and was also a workaholic until the DDD set in to go along with the AS. I went from bike riding and running to weight lifting combined. Then I gave up the running and bike riding after starting to study the martial arts. After several episodes of back pain the weight lifting but I continued with the martial arts even after having two back surgeries. As the AS progressed I started having problems with over extending my hips so to compensate for not exercising I became a workaholic. Personally I never thought of it as an addiction but more to try to stay healthy and build my system up, but looking back it was a fairly bad addiction.

I would wait until your doctor got the results for the B27 marker and see what he tells you before going to a third doctor. If he says no I would find another rheumy and let them know about your previous diagnosis but you are seeking another doctor because of the insurance company. I would leave the part about the second doctor out and let the third doctor work from scratch and the reports from the first one.

My early morning stiffness has gone from about an hour to more like three hours then the pain and stiffnes returns late of the evening. My exercise is limited due to DDD which causes more pain if I do to much, but with the AS if I don't do some exercise the stiffness and pain gets worse.

Brent

Wow Tim, thanks for this detailed info. I, too, have been afraid I was going to get tagged "fibro," so it's good to see it summed up like this. I feel in my heart, beyond a shadow of a doubt, it is definitely not that for me.

Monine, like you my blood tests are negative, and other than being told it seemed symptomatic of AS, I've not been diagnosed yet. Sometimes I feel the pain come back or increase later in the day/evening too, but I've noticed that it's mostly very specific muscle pain then, from trying to carry myself differently to deal with the joint pain. After a day of doing stuff during a flare my lumbar muscles are super-tight and stick out like a body builder! (eek! ) But if you push into the joints (or push hard on the vertebrae themselves), that is where I feel the sharp pain. The muscles are just aches...duller, nagging...they don't go away as much either when I change position as the joint pain does. My sleep interruption is also due to waking up between 2 and 4 am usually with my SI joints killing me. In the morning, after getting up and unsteadily stretching out and walking around for an hour or so the stiffness eases some and I don't hurt nearly as badly then.

I am curious to see how your MRI results turn out. I haven't had any imaging tests done for it yet, but I may try to get a pelvic or spinal x-ray later this week. Right now I'm just taking Relafen and using lidocaine pain patches, combined with oxycodone when I can't stand it anymore and I know I'm not going to be driving anywhere. Let us know how things go for you with the MRI! If it's not definitive get rid of this guy and find someone who's a bit more open-mindedl. I hate it when medical professionals think that everything they know about their field is the only thing that can possibly exist...I went to school with a guy like that...as far as I know he's doing his residency in cardio-thoracic surgery now, which is a blessing to everybody! He had the bedside manner of a slug, LOL!

~medmommy

Monine,

I am still waiting for a dx, but I am certain AS is what I have. Well, I guess I should say that AS is the only thing out there that fits me. If there is something else, I have yet to find it.

With that said, I will say that I am new to the concept of AS, but I have done my research. This research has showed me that some doctors I have seen know much less about AS than I do. Even though they may know some facts about AS, a lot has changed in the past 30 years they've been out of med school.

I would definitely recommend a 3rd, 4th, or 5th opinion. As much as you have the patience, insurance, and/or funds for. Don't rule out PT and Chiropractors for some insight either. I will stress that you must go with caution. I have found a great chiro who wouldn't dream of touching me without X-rays and taking the AS possibility VERY seriously. No cracking or popping for this gal! They may be able to offer a little insight for you though.

As far as exercise... I suppose you could say I am addicted to exercise. By this I mean low impact walking that doesn't hurt me. Everyone is different. Sitting in the same position long term is bad for me... but this doesn't mean that I do hardcore exercise to minimize my pain. I think this concept may be hard for doctors to understand... you sort of have to live it to get it. You must determine what works for you. I do low impact yoga, walking my dog, and occasionally I will do more strenuous cardio. During a flare up there is no way. I also have pain in my joints, so running on hard surfaces is difficult.

I actually just got back from a day of shopping. I could not do it without mild pain killers. While walking helps, I still experience pain. I also tire easy.

I hope this information helps you in your journey. Remember that you know yourself better than anyone else.

Aly

Maybe the term addicted to exercise is not quite the correct term. Repeated exercise causes beta-endorphins which is the bodies natural pain killer to help block the pain we feel everyday. So it could be termed addicted to endorphins since they are like some of the narcotic pain relievers we are prescibed.

Brent

Thanks Angelmom. I'm wondering if you take any medication for your fibro? I've been taking a small dose of gabapentin for a month and my primary care just upped it, though its making me super drowsy. Its not even working yet. I hear Lyrica is expensive, would you know about that one.... how much? does it even work? I would like to cover all my bases...if its AS, Fibromyalgia and/or both. Are there any special exercises that make you feel better, besides kissing that cute little baby in your pictures?