So when asked where this leaves me - he said it was better that i had no diagnosis and that i should not be hung up on trying to find one and to get on with my life.......thats all well and good - but does not help me understand why i am suffering from SERIOUS pain!
thankfully very few people ever gave me that advice, and thankfully no doctor ever did. but the few that did, i'm sure they were well intentioned, but when we can barely walk from the bed to the bathroom some days. are too bad to go to work and fear that we will lose our careers if that happens too often. have severe enough pain that it affects our blood pressure, our GI system, etc. well, hard to ignore and get on with our lives.
one thing that has helped me not get that kind of advice from doctors is to explain to them that i've had serious migraines since i was younger than 10 years old. to the point that light hurts my eyes and i have to wear sunglasses in a darkened room. to the point that i'm severely nauseous, and through all of that, i've never missed a day's work, never missed a class as a student. yeh, it hurt, and yeh, it was hard to focus, but i could do it. but with this pain, its beyond that at times.
do you have a similar analogy you can use to try to get the doctors to understand the intensity of the pain?
or can you give concrete examples of how the pain limits your ability to function? i've found specific examples can be helpful.
granted the first 4 rheumatologists still weren't helping me (the first 3 sent me on my way, the last just didn't help me), but at least i never got "all in your head" or "nothing wrong" though many wrote i seemed "anxious". well, yeh, pain can make you seem "anxious" but its just the pain showing through. too bad not everyone can differentiate pain and anxiety.
Then he said that with the inconclusive MRI and the fact that my blood test carried out in January 2012 (which was carried out during a good period) shoed a CRP level of 1 - therefore there is nothing wrong with me and that he was now discharging me.......
do you flare and feel better in between? or flare and then "recover" in between. when i finally got to rheumy #5, the one who dx'ed me with undiff spondy. he's the one who told me that if i weren't flaring at the time the blood tests were done, then that would explain my ESR and CRP being below 10. elevated a bit yes, but not hugely. but do wonder what it would be at the height of a flare.
then again, its very common for spondy to not elevate CRP or ESR. a good rheumy will know that when you can get to one.
When i gave him some printouts showing how they go about diagnosing the likes of AS - he cut himself short of saying i had Cyberchondria, that it was dangerous to try and self diagnose myself as it could lead to me actuially believing i had the condition - and that i really should drop my fixation on getting a diagnosis.......to which i insisted i do not want to have anything wrong with me but being in pain 24/7 is no way to live and unless i got help i would be finding myself on the end of a rope!
it really depends on the doctor. some don't like us doing our own research. others love it. my podiatrist, every time i go, she says, "here, take out a piece of paper and write this down. and when you get home, google it and read about it." then she'll tell me what i have, explain it, but then she wants me to go get informed myself. i love her for that.
or my rheumy, he loves comparing notes about what we've both been reading. its like talking to a science colleague. he loves when i share some new info with him, though must admit, its hard to tell him something he doesn't already know, because he's so well read. my GI doc is similar, but for him, he seems to get most of his info from attending conferences, but he has no problems with me reading and asking him questions based on my reading.
i feel like my most informed doctors are the ones who don't mind me being informed. or maybe we just have similar styles that mesh well together. either way, i'm happy
it may help some that i'm in a science field and so some of what i read is for my personal interest and some for my profession.
but i've had other doctors that aren't as amenable to my being informed.
My GP is of the same belief that there is nothing wrong with me.......so i am now in the world of limbo - questioning whether i am indeed suffering real pain or whether it is all in my head!
while we may not know what is causing the pain, we know when we are in pain, don't feel well, etc.
So whilst the pain is here (and very gladdly is being dimmed by naproxen and tramadol - although only have a weeks supply and wont get anymore)i am left with the imprssion i am making it up and should just shake it off and MAN UP!
if these things help, that can help the dx.
plus naproxen is OTC too so you could keep taking that on your own til you get medical help.
The only other thing i can think my symptoms tie in with is Fibromyalgia......but i am self diagnosing again and should stop it
from the beginning, fibro was tossed around. but i was lucky to have some very good doctors (physiatrist) and PT who specialized in working with fibro patients and so they were able to rule the fibro out and explain to me the differences. along the way, many doctors ruled it out for me. but then i had a rheumy who quickly labeled me with it, and it took years and several more rheumies before i had one write that i did not show any signs of it, to get that in my files.
so, i decided if it was going to be tossed around so freely, i had to go educate myself on it. it was very clear that i did not fit the picture of fibro and do fit the picture of inflammatory arthritis very well.
while its important to not self diagnose, its also important, IMO, to be educated and knowledgeable. so that we know what questions to ask the doctors and know how best to succinctly describe what is going on.
initially, i was too focussed on the details of my symptoms, so it was hard for a doctor to see the forest for the trees. it was only after i started seeing the forest that i got better at explaining all the symptoms to the doctors, and was less focussed on the severity of my torn tendons and ligaments.
but it was also equally important that i found a doctor that could see the forest for the trees.
the rheumy that dx'ed me said that its not that common for someone to have enthesitis bad enough to tear tendons and ligaments and that well could have been one of the things that tripped up the other doctors in getting a dx.
though of course i know lots of people here that have torn tendons and ligaments. so i wonder how uncommon it is?
and of course, you'd think all rheumies would understand the concept of flaring, and thus wouldn't necessarily have to see us at our worst, to believe us. but, the first few rheumies, because we make the appointments when we're flaring, then a few months later, when we finally get the appointment, we're no longer flaring, and can look pretty good, they have to believe our stories. and if they don't, then they don't think much is wrong. and when we finally get approved for the blood work or the scans, if we don't go in the middle of a flare.....then not much will be seen.
i only understand all of this now. i wish i had understood it back then, maybe the dx wouldn't have come so late.
so, my best advice, just keep going. eventually you will be dx'ed and treated. or at least treated.
that last part, treated, is really what matters. of course its easier to treat if one knows what it is. but sometimes the specifics matter less if the treatments are the same.
and i do think it helped me when i told the doctors "i don't care what we call it, i just want to treat it, feel better, and be able to continue in my career."
of course i was curious what i had, but telling them that i was more focussed on feeling better, which i was, was helpful.
just keep at it. you'll get there. everyone does eventually.
i was here for 3 years watching everyone else with symptoms just like me get dx'ed. and wondered "why them and not me? what am i doing wrong?" but it was simply finding the right rheumy.
though i still flare, i'm so much better in between flares, we must be doing something at least partially right.