Showing posts with label Ankylosing Spondylitis. Show all posts
Showing posts with label Ankylosing Spondylitis. Show all posts

Thursday, October 15, 2009

Another Diagnosis: Sacroiliitis

I met with my fibro doctor last Tuesday.  Luckily, I had the forethought to try to jot things to discuss down on paper, starting a week or so before my appointment.  I had a whole page of topics!  Here's a wrap-up of the major points we covered.

I explained about my hip and lower back issues. The doctor diagnosed Sacroiliitis and gave me a special velcro belt that helps tighten the hips.  It feels good.  I am to wear it as long as it feels comfortable, to help align the sacroiliac joints.  He even measured my legs to see if they might be different sizes, which can lead to this problem, but they are the same length. He mentioned that Sacroiliitis can be a symptom of Ankylosing Spondylitis, but didn't seem too concerned at this point.  (I'm still concerned, but we'll see how it goes.)

I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch.  He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit.  These are very hard on the knees, he says.  He also said skipping steps while going up stairs is really bad for that, too.  I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work.  I've been stopping myself, now that I know it's bad for my knee.

I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds.  He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises.  My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness.  At any rate, he did not seem too worried about it after conducting the little test.  I guess I still don't know exactly what's going on with this.

Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat.  However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep.  He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse.  I just need to be aware of the side effects and keep them in check.  I am currently making an effort to eat healthy foods and cut down on indulgent sweets.  I actually lost a couple pounds counting calories, last time I checked. 

He wasn't too worried about my using Tramadol for pain about once daily.  I have been taking it most days in the mornings, when I feel worst.  He says that's not a big deal.

I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time.  Oh well, I'll jot it down for the next time.

I guess that's it for now.  I just wanted to write something down to help digest it all, and share it with you at the same time. :)

My next appt. is Tue. 12/22/09 @ 8:20am.

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.