Thursday, September 10, 2009

Am I "Hip"? (Sacroiliitis and Ankylosing Spondylitis)

What a couple of tongue-twisters, eh?  I learned about these two conditions recently while looking into possible causes for my recent bouts of pain in my left hip area.

The left side of my very low back and hip, down to the back of my left thigh, have been bothering me a lot lately.  My last flare, which lasted about two weeks, centered predominantly on pain stemming from, and probably referring from, the top of my left hip bone.  I remembered my doctor telling me that my sacroiliac is probably to blame for what had been diagnosed as sciatica, but that pain is sudden, lightning-like, and remarkably intense (enough to startle me visibly).  I usually get what I understand to be sciatic pain in the back of my right thigh, but similar lightning-like pains have jolted me under my right forearm and wrist, and also the right side of my neck.

Getting back to the left side, I went on a research hunt for information regarding the sacroiliac.  The following link has a great description of sacroiliitis (inflammation of the sacroiliac) and its symptoms.  There is also a nice graphic showing the sacroiliac joints.  Basically, they look like two fractures in top area of the hip bones, connecting the sacrum (tailbone) and each ilium (hip bones).

Sacroiliitis Info

Except for the eye problems (though I have had some minor problems within the last few months, if I remember correctly), the short list of symptoms for sacroiliitis seems to fit.  I have been "hot and cold at the same time" as I like to describe it, for pretty much most of every single day for months now.  I shiver at the slightest breeze, even, and especially, if I'd just been sweating from feeling too hot.  At night, I pile on three layers of sheet, blanket, and comforter to warm up, then wake up in a pool of sweat.  I simply cannot sleep if I shiver.  Could this be the "fever that appears quickly"?  I can only speculate.

The rest of the symptoms listed surround pain.  Of course, pain and weird symptoms are already part of the Fibromyalgia, so it's hard to say with any certainty that another condition like this could be overlapping with if the symptoms include pain. 

Ah, such is the life of a fibromite: always wondering and trying to hunt down answers.

The Ankylosing Spondylitis (AS) research actually collided with my Sacroiliitus research.  I remember seeing "Ankylosing...(something)" in Fibromyalgia support groups and other forums online.  I had no idea what it was and could hardly remember the name, but, skilled little researcher that I am, I found it and learned all about it.

Ankylosing Spondylitis (AS) Info

"Ankylosing spondylitis is a chronic inflammatory disease that primarily causes pain and inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also cause inflammation and pain in other parts of your body as well."

It seems to me that sacroiliitis could be considered an earlier stage of AS, if it were to progress.  AS can result in bony growth at the vertebrae, causing fusion of the bones.  In turn, this means the poor AS patient has reduced mobility and a higher chance of fracture.  I've seen some very drastic photos of people with very advanced AS (AKA "Bamboo Spine" - yikes!), and they are very hunched over.  VERY.  (Don't look unless you can handle it.)

It's a scary prospect to think about that I may have or be on my way to having either of these conditions, but I've always been ready to face my fears in favor of responsible action.  I can handle the diagnosis; I just want to do what I should to keep things from getting worse and (dare to dream) possibly heal or reverse whatever is wrong.

Since I had had many MRIs, CT scans, and x-rays in the last few years, (and who among us fibromites hasn't?) I also started reviewing my own test images to see if any differences can be spotted at the sacroiliac joints or spinal bones.  From what I've read, these conditions are not easily spotted until several years of damage has already occurred, and there is no difinitive testing that can concretely diagnose either.  Figures, right?

Well, the good news is, my untrained eyes do not notice any obvious bony growths or inflammation.  Then again, I didn't have the appropriate tests, targeting the specific areas.  The picture on the left is an x-ray taken during a CT scan on 3/8/08.  The picture on the right is an x-ray taken during another CT scan on 6/5/09.  You can clearly see the sacroiliiac joints in the first picture, but it's a bit harder to see in the second one.  Both times I had to drink that nasty gastric dye which makes my colon look nice and bright, but blocks the bones a bit in the later x-ray.

Anyway, I will have to mention my hip pains to my doctor the next time I see him, in case he can find any reason to worry about either of these conditions (or anything else).  If you have had either of these conditions or want to add any comments about any of this, please feel free.  I love the feedback and would like to know more about the prevalence of these conditions among Fibromyalgia patients.

4 comments:

  1. I have lightning like pain in my back and shoulders. It is more like stabbing ice that comes on suddenly and sharp. Doctors just think it is fibro with maybe pinched nerves.
    As far as chills when it is warm. I do that all the time with a slight breeze or change in water temp. We are just supper sensitive to the cold. I sleep with a thermal blanket every night.

    Hope things get better for you, ((hugs))

    Teia

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  2. So I'm not the only one! Thanks for sharing. I sure hope you don't have too may "stabbing ice" pains.

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  3. I hope you find an answer soon that will explain the cause of your recent symptoms. I realize you’re still in the “searching for a diagnosis” stage but I want to make sure that you’re aware of an organization dedicated specifically to those suffering the effects of ankylosing spondylitis.

    The Spondylitis Association of America (SAA) is the only non-profit organization in the US dedicated to improving the lives of people with ankylosing spondylitis. Formed in 1982, SAA is committed to increasing awareness of spondylitis, providing information and support to all those affected, and ultimately, working to uncover a cure for the disease.

    SAA’s mission is to be a leader in the quest to cure spondylitis and to empower those affected to live life to the fullest.

    Resources are available -- including books, DVDs, brochures and publications, an 800-page website with interactive message boards, a quarterly, advertising-free news magazine, and a tight-knit community of people who understand the daily challenges of living with this chronic illness. For more information, feel free to contact me or visit www.spondylitis.org.

    Diann@SAA

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  4. Thank you, Diann, for posting. Yes, in my quest for information, I did visit the SAA website: http://www.spondylitis.org/

    Having been diagnosed with Fibromyalgia, which is so vague and systemic, I have learned to be wary of giving my trust only to reputable sources for information. SAA passes my test for being reputable, and I'm glad it's out there for people like me who need reliable information.

    Thanks so much for posting your comment!

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