Toodle
11-12-2004, 11:45 PM
I noticed Tutti Fruti said had inflammation of sacroiliac joints showing on bone scan & that doc said had spondiloarthropathy. I had a bone scan done and was told they thought I had the same thing. So they did a CT scan to match up with the bone scan to see. I haven't heard for sure yet. Is spondiloarthropathy serious? I'm scared. Are the sacroiliac joints the ones that hurt when you sit, like right around your tailbone? Did they confirm that you have it?
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tutti-fruti
11-13-2004, 03:04 AM
Hi there. First, did you get the results of the CT scan yet ? let me know what the results were. My story is that I went to 3 rheumatologists + one GP (and of course many many other doctors since May 04 to eliminate other conditions). The one who prescribed the bone scan, is the one who told me that I have undifferentiated spondiloarthropathy. The others ruled out this diagnosis because they did not trust the bone scan that had been done and clinically they found that I don't match such a diagnosis. So they all agreed on the fibromyalgia. The sacroiliac joints are the ones right above your buttocks and if you have sacroiliitis then you normally should have a lot of pain, stiffness in the morning upon wakening up and low back pain. Where is your pain? what kind of symptoms do you have in general ? I'll tell you more about it when you describe your overall condition to me as well as the results of the CT scan
Toodle
11-13-2004, 09:05 AM
I have not got the results of the CT scan yet. I don't necessarily have the pain when waking up but I get it )right above my buttocks) after sitting for awhile. This started after I had my baby so I just figured it was something from that although it was a c-section. I never said anything to the docs about that pain but they mentioned that those joints showed as inflammed on the bone scan & it went from there. The doc said she thought it had spondiloarthorpathy and then they ordered the CT scan. So then I realized, hey, is that the place I've been having this pain while sitting?
Izzybella
11-13-2004, 01:46 PM
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kcgage
11-13-2004, 02:57 PM
I don't know if this would help you, but acupuncture in the SI joints really helps me.
Snowbird
11-14-2004, 02:03 AM
I've also had pain in the sacroiliac joint. I feel it in my hip. I've been going to a chiropractor and a massage therapist for that. X-rays show nothing wrong there so perhaps it is muscle & tissue rather than the joint itself.
I am being tested soon by a rhumotologist for the possibility of Fibromyalgia. The doc put me on Celebrex (not covered by my medical plan so it had to be changed to another med but guess what ... I've misplaced the stupid vial and can't find it!). One of many mishaps lately due to brain fog. :dizzy:
Fortunately my hubby has some Celebrex that I've been using for a few days (until I locate the stupid vial of whatever the doc prescribed for me).
I have all over body pain that feels as though a pain serum has been injected into my body. I've been very depressed and crying lately ... probably due to the long bout with pain.
Also prescribed is BacLoflen (spelling?) a muscle relaxant and an anti-depressant (Amitriptylne).
The all-over body ache has subsided, almost immediately upon taking the Bacloflen. Yippee! Now I can concentrate of figuring out what is causing it (possible Fibromyalgia) and what I can do to fix it. I'm really into alternative medicine.
I am being tested soon by a rhumotologist for the possibility of Fibromyalgia. The doc put me on Celebrex (not covered by my medical plan so it had to be changed to another med but guess what ... I've misplaced the stupid vial and can't find it!). One of many mishaps lately due to brain fog. :dizzy:
Fortunately my hubby has some Celebrex that I've been using for a few days (until I locate the stupid vial of whatever the doc prescribed for me).
I have all over body pain that feels as though a pain serum has been injected into my body. I've been very depressed and crying lately ... probably due to the long bout with pain.
Also prescribed is BacLoflen (spelling?) a muscle relaxant and an anti-depressant (Amitriptylne).
The all-over body ache has subsided, almost immediately upon taking the Bacloflen. Yippee! Now I can concentrate of figuring out what is causing it (possible Fibromyalgia) and what I can do to fix it. I'm really into alternative medicine.
tutti-fruti
11-16-2004, 03:14 AM
Char123, did you get your results from the CT scan yet ?
aaronon
11-16-2004, 10:39 AM
I've often wondered why my back hurts so badly when I get up in the morning and if I sit or lay on the couch for a long period of time, it takes me a while to get up. Wow! How nice to know what that pain is finally. It has had me just about to the point of giving up, because that hurts! I thought Fibro was bad, with IBS etc....now I have this too. I am so sick of this!
tutti-fruti
11-18-2004, 02:39 AM
Hi Char, did you finally get the results of your CT scan? I'm really interested in knowing because I have the same situation with the bone scan showing inflammation, as you know, so I would like to know what a CT scan would show more than the bone scan. Thks.
Toodle
11-18-2004, 11:58 PM
I haven't gotten the results of the CT yet. This was actually done at Mayo Clinic in Minnesota. I was sent there cuz of all the different problems I've been having. I had a full body bone scan done at my hometown in June & when I took those films to Mayo they looked them over & also sent me to their "Fibromyalgia Clinic". They diagnose you there although I had already been diagnosed in July by a rheumy. The lady doc at the Fibro clinic said yes that I did have fibro but she thought there was something else going on so she wanted me to have a repeat bone scan. She said she thought I had spondiloarthorpathy. I've been having severe left back pain around my ribs & up under my left breast but the bone scans don't show much problem in my ribs. They did a EMG that showed a have a muscle myopathy, which I guess is just some disorder of the muscles. They say that's probably why I twitch/spasm alot. Anyway, they repeated the bone scan & it showed the inflammation in the sac joints so then they said they wanted to do a CT of my pelvis & they would take that & somehow match it up with the bone scan. I'm supposed to being going back in a few weeks for follow up. I'm planning on calling next week to see what they found out since the doc I seen there was out of the office this week. So that's all I know for now. I wish they could figure out why my ribs & back hurt so much. I've had some docs say it's a neuropathy, others disagree. So is it bone pain, muscle pain, nerve pain, or what, I just don't know but the pain is terrible. I do get bain right above my buttocks when sitting for a while. Been that way since I had my baby in Feb of this year. I never said anything to the docs about it but then realized hey maybe it's coming from my sac joints since they say they show inflammation on the bone scan. All I know is that I just hope whatever all is going on with me is that it won't kill me or disable me or keep me in too much pain. I'm only 29 with a husband and beautiful daughter. So much to live for. I've been so depressed and anxious with all these body symptoms and pain. I hate it. So I'm not sure what exactly the CT will tell them when matched up. I'll find out though and let you know. Did you ever get a diagnosis or did they just say not to worry about it?
tutti-fruti
11-19-2004, 03:06 AM
My diagnosis is fibromyalgia by 2 rheumatologists and one GP. Then I had another (3rd) rheumatologist, an old guy, telling me that I have spondiloarthropathy (undifferentiated), and not fibromyalgia. This guy is the one who prescribed the bone scan. And this bone scan, which showed that I have inflammation on the sacroiliac joints, and therefore spondiloarthropathy, was not confirmed by the other doctors. They don't believe that I have spondiloarthropathy, that is. And one of them in particular, told me to throw the bone scan in the garbage. Go figure. Anyway, I believe that I do not have the symptoms of a spondiloarthropathy (morning stiffness, low back pain). I have pain all over me, even my skin hurts, my joints, flu-like symptoms, and I get all these symptoms when I get really tired. I'm really interested to know the results of your CT scan though. I thought that the bone scan was the ultimate examination that shows absolutely whatever there is to show. However, from what I can see, it is not enough. Pls let me know because I might decide also to have a CT scan. Thks.