I have had some pretty horrible symptoms for about 22 years. I am pretty sure I am dealing with AS & sacroiliitis. At one point my dr though I had Lupus, but now we are not so sure. I guess I will need some x-rays done.

I have a terrible time getting myself into a sitting position & there are times when the pain is so unbearable, I moan every time I have to get up or sit down. I am only 43!!

I had my first child at 19 & heard a very distinct CRAAAACK, when his head emerged. I asked the dr what it was & he told me that it was my 'tailbone' fracturing. I then went on to have another baby 2 yrs later, but she was tiny enough that I did not fracture. Then 6 yrs later, I had my third & largest baby. Once again the CRAAAACK was heard. Everyone in the room heard it too. And the pain has been pretty bad ever since.

I should also say that my body has suffered some un-natural disasters as well - I was hit by a car at age 15 & suffered a broken femur. Another accident 2 yrs later, as a passenger in a car that hit a tree doing 110 mph. Spent a week in the hospital/intensive care & had my jaw wired up. Have been in a few minor fender benders since then & had whiplash (was bad enough!)

When I was about 17 my hips began locking up. I could be laying down or sometimes even standing up & they would seize up & the pain would have me hollering & Lord help anyone who tried to touch me - that made it worse. My son almost drowned once while I lay on the beach watching him & when he fell & went under my hips locked up & I was screaming for someone to get my son - took me a good minute or so before I was fit to move.

My Dr has sent me to a specialist, who has diagnosed me with Fibromyalgia, but after I stumbled onto a very brief, yet enlightening article at the neuro's office today, I began to wonder if alot of us are not diagnosed with Fibro at some point before a correct diagnosis is made.

My tailbone is at it's worst today. My eyes were so messed up a couple of days ago I was awake in pain the whole night from that. I am extremely sensitive to fluorescent lights - my eyes go into spasm & I wind up with migraines.

I can put my neck & back out simply turning over or flipping my hair out of my eyes. Then its onto the couch doped up on oxycodone for a day or two.

I have had several blood tests come back positive, ANA & anti-ds-dna, but then after several positives I had both negative. Not enough to dx me with Lupus. They are going to keep a watch on that. I have never had the blood test for AS.

I have unexplained muscle wasting in my left leg

My foot pain keeps me awake & I have severe chest pain - to the degree that I have many times wondered if the end was near. I guess I don't need to worry quite so much about that if I turn out to have AS.

I have the bowel thing going on too - can be in & out of the can 10 times before I even eat.

I am also affected sexually - this might sound funny, but when 'the moment' hits my ribs go into spasm, thus RUINING the moment. I am getting to the point that it's just not worth the bother anymore, as I am guaranteed a muscle spasm every time I am intimate.

I wonder about the Fibro - I do get the 'burn' that is associated, and all the rest of the fibro symptoms, but I seriously think there is more going on.

I am in a battle for my life with ODSP (disability pension) - they say I am not sick enough to qualify. It is a battle some days just to do my hair.

Just looking for some support & have always loved these boards!

Dee

HI,

I am sorry for all you are going through. It's really frustrating going on so long without any definite diagnosis or treatments. Hasn't anyone ever looked into the tailbone fractures? What was done for you after that happened? I mean, I would think a fracture would hurt..and perhaps that has alot to do with things. Also from all those injuries you might have developed some arthritis.
And if something was fractured and didnt heal or healed wrong or something, that can wreck alot of havoc. Maybe from all that, your alignment could be out of whack, which causes extra stress on other muscles, joints, ligaments, etc....and can cause all sorts of other pain. I know I've had bad ankle swellings and pain over 18 yrs & now I have no more arch, my whole foot is deformed, i walk with a limp and my leg is all out of alignment. I just had surgery for severe stenosis, have spondylosis, OA in my joints, lupus, and was also diagonosed with fibromyalgia. I was told my muscle pains and achiness were from the fibro....BUT, after reading research and other people's posts with fibro, it seems that Prednisone is an enemy of fibro and makes it worse. Now, in my case, when I first tried Prednisone b/c of a bad flare.....every single muscle, joint, ligament, and other tissue in my body suddenly felt normal again! I had no more tender points, no more muscle fatigue or burning, no more headaches or flank pain, no more hives, the list goes on. So this makes me wonder if I even have fibromyalgia. And recently my surgeon, PT, hip doc, and podiatrist said that lupus can cause muscle & tendon problems. Which could explain why my ankle's deteriorated over the years; but this ankle problem put most of the rest of my body out of alignment for so long, which could have contributed to my stenosis, spondylosis, and hip arthritis, etc..

I have only had one test (that I know of) a longgg time ago that came back a high titer ANA & that was done by a dermatologist when I first developed a rash across my cheeks, nose, and forearms. It was red and raised and looked weird. I thought back then maybe I got skin cancer or something. That doctor actually took alot of time with me asking about other symptoms, etc..and asked me if I ever heard of lupus. Though back then I had no insurance so I really couldnt follow up with it all. I just went through the flares over the yrs until I had insurance again 4 yrs ago.

Have you ever had any MRI's done of your spine? Ever been checked for any disc or nerve problems? I do know that certain nerves in your spine, when compressed, can cause muscle weakness, wasting in the legs, and/or feet, severe muscle spasms (which can end up spasming in other places besides yoru spine), can cause urinary problems, etc.....Then again, I think AS can cause some of those symptoms also. I have been checked for AS by MRI and so far nothing is fused on me so my doc doesnt think I have it...but I do have joint pain up and down my spine, neck, right shoulder, both ankles, and hips and I have had pain in my chest/ribs on the right side while laying in bed.

It's hard, though, because so many of these diseases have simliar symptoms or overlaps of symptoms. At least my current rheumy went by all symptoms I told him i've had in the past, and one's he has seen...and has given me meds to try. For me, Bextra was great, but Prednisone got rid of everything! But can't stay on that for too long.

So if I were you, if you can, find another doctor that will help you more and try to get to the root of the problem. Again, if you've not had any spinal MRI's done, see if it's possible to do it. At least get it checked and ruled out, if anything.

Thanks for the reply - sorry it took me so long, I just got too busy & of course now I am in a full blown episode. Pain everywhere & just so drained. My stomach muscles & lower back are thudding with pain too, as is the tailbone.

Nothing was ever done for the fractures - I was told when it happened that there was nothing to do for it but let it heal. A friend is a nurse & she tells me that if worse comes to worse they can remove this useless joint?? Never heard of such a thing, but she assures me she knows of it & knows someone who had it done.. NOT that I would consider it!! I would research it to death first!

MRI is being booked - I expect to hear back from my Dr very soon with a date. Also will be seeing a new rheumie soon too, or at least getting a date with him that COULD be two years away!! Our health care sucks here - it's great that we have OHIP, but we have HORRIBLE wait times to get diagnosed - meanwhile there are folks getting sicker & sicker that become a bigger drain on our health care because they were not caught quick enough. An aquaintance of mine has been put through MANY tests over the last 18 months & is FINALLY on the verge of finding out he has cancer. It's awful. Yeah we would have to PAY for health care in the US, but at least out wait times wouldn't be so rediculous!

BTW, the only thing that I have not got that might point to lupus dx is the malar rash. All the other symptoms I do have. My Dr being an American trained physician, says he'd have dx'd me long ago with lupus... my rheumie thinks not tho!!

I am off to bed - soooo tired & walked too much today!

Thanks for the reply & hope you feel better soon too!

Dee

HI,

I am sorry for all you are going through. It's really frustrating going on so long without any definite diagnosis or treatments. Hasn't anyone ever looked into the tailbone fractures? What was done for you after that happened? I mean, I would think a fracture would hurt..and perhaps that has alot to do with things. Also from all those injuries you might have developed some arthritis.
And if something was fractured and didnt heal or healed wrong or something, that can wreck alot of havoc. Maybe from all that, your alignment could be out of whack, which causes extra stress on other muscles, joints, ligaments, etc....and can cause all sorts of other pain. I know I've had bad ankle swellings and pain over 18 yrs & now I have no more arch, my whole foot is deformed, i walk with a limp and my leg is all out of alignment. I just had surgery for severe stenosis, have spondylosis, OA in my joints, lupus, and was also diagonosed with fibromyalgia. I was told my muscle pains and achiness were from the fibro....BUT, after reading research and other people's posts with fibro, it seems that Prednisone is an enemy of fibro and makes it worse. Now, in my case, when I first tried Prednisone b/c of a bad flare.....every single muscle, joint, ligament, and other tissue in my body suddenly felt normal again! I had no more tender points, no more muscle fatigue or burning, no more headaches or flank pain, no more hives, the list goes on. So this makes me wonder if I even have fibromyalgia. And recently my surgeon, PT, hip doc, and podiatrist said that lupus can cause muscle & tendon problems. Which could explain why my ankle's deteriorated over the years; but this ankle problem put most of the rest of my body out of alignment for so long, which could have contributed to my stenosis, spondylosis, and hip arthritis, etc..

I have only had one test (that I know of) a longgg time ago that came back a high titer ANA & that was done by a dermatologist when I first developed a rash across my cheeks, nose, and forearms. It was red and raised and looked weird. I thought back then maybe I got skin cancer or something. That doctor actually took alot of time with me asking about other symptoms, etc..and asked me if I ever heard of lupus. Though back then I had no insurance so I really couldnt follow up with it all. I just went through the flares over the yrs until I had insurance again 4 yrs ago.

Have you ever had any MRI's done of your spine? Ever been checked for any disc or nerve problems? I do know that certain nerves in your spine, when compressed, can cause muscle weakness, wasting in the legs, and/or feet, severe muscle spasms (which can end up spasming in other places besides yoru spine), can cause urinary problems, etc.....Then again, I think AS can cause some of those symptoms also. I have been checked for AS by MRI and so far nothing is fused on me so my doc doesnt think I have it...but I do have joint pain up and down my spine, neck, right shoulder, both ankles, and hips and I have had pain in my chest/ribs on the right side while laying in bed.

It's hard, though, because so many of these diseases have simliar symptoms or overlaps of symptoms. At least my current rheumy went by all symptoms I told him i've had in the past, and one's he has seen...and has given me meds to try. For me, Bextra was great, but Prednisone got rid of everything! But can't stay on that for too long.

So if I were you, if you can, find another doctor that will help you more and try to get to the root of the problem. Again, if you've not had any spinal MRI's done, see if it's possible to do it. At least get it checked and ruled out, if anything.