Tuesday, September 29, 2009

Lots of Presyncope and Tinnitus

I've been dealing with lots of frequent bouts of presyncope lately.  Basically, I move a little and have a moment of feeling faint. 

For instance, when I get up from my work desk to go to the restroom or to the kitchen for a drink, and by the time I get to the first corner, I feel a moment like I  might faint, but I don't.  I've never fainted (that I can recall), so I'm not sure if this is the best description, but I feel like I might lose consciousness - just for a brief moment - many, many times a day lately.  This has been going on for maybe 2 or 3 weeks now, or maybe longer.

Other times I notice this feeling including: in the morning, when I first get up and start walking around, especially once I start descending the stairs (very slowly); while doing my stretches; when I get out of my car after arriving at work or home or wherever; getting off the elevator at work; just walking.

Sometimes it happens randomly while I'm just sitting and working at my computer.  I haven't narrowed it down to exact movements, but perhaps it might have to do with raising my arms (to put my hair into a pony tail or bun, or to stretch), or turning my head.  I'll have to keep watching for the details to see if I can figure out the pattern.

I've also been having tinnitus, especially in my left ear, a freakin' LOT for the past month or so.  I mean, like mad!  I hear this loud ringing that suppresses other real noises in the world around me, so I can hear the ringing better (great...).  It's this high-pitched tone, kind of like after a loud rock concert, but it just comes and goes all day long, as it pleases, making me act like a deaf, old granny as I cup my ears to better try to hear what those quiet people are saying to me. 

SPEAK UP, FOLKS!  I'm not kidding; I seriously have trouble hearing you!!  I'm forever turning up the volume on the TV while my husband and I watch together.  This, of course, confuses the hell out of him, because I am also forever turning down the volume on the stereo in the car.

Anyway, I am not sure how these symptoms fit into the Fibromyalgia swirl of symptoms, or if they are related to each other.  Of course, I'm concerned that there is some new problem that needs to be addressed, like low blood pressure, arthritic issues, heart problems, whatever... I just have to put all the worries aside for now, until my doctor can assess them, and just deal with the day to day challenges, one at a time.

Do you have these symptoms?  Have they been attributed to Fibromyalgia or other conditions?  Did you get treatment?  I'd love to hear from you, dear readers.

Thursday, September 24, 2009

Some Things are Worth a Flare

Being a fibromite means being fragile.  I'm sensitive, I hurt all the time, and my muscles can't take much activity due to a chemical inability for them to access sufficient ATP from food.  As a result, I'm told to limit my activity, get plenty of sleep, and make sure I relax and try to reduce stress.

As a general rule, I follow this advice and try not to awaken the "fibrobeast" if I can help it.  However, living cautiously and carefully all the time kinda sucks.  I'm not going to spend my time on this planet trying to remain as comfortable as possible all the time.  I only get one chance to live life, and sometimes I am going to go ahead and risk a fibro-flare for the sake of fun and rich, fulfilling experiences.  That's right, some things are worth a flare!

Last week, I had a very busy week that was hard on my frail little body.  I had long days and little sleep.  Saturday, however, I went with my husband Don and enjoyed an annual beer fest a couple hours away (Great Lakes Brew Fest in Racine, WI).  It was a long day of concentrated fun, but WELL worth the flare I'm suffering now.  We had so much fun, we're planning on attending again next year.

I encourage my fibrofriends to prioritize life's experiences.  Don't waste the rest of your precious days wallowing over the life sentence that a Fibromyalgia diagnosis gives.  Consider making the most of life and have some fun!  You can't do it every day, but if it's a rare opportunity, it might be worth the flare.

Saturday, September 12, 2009

Split Personalities

"Acting" with Fibromyalgia is a great post from the blog "Just Breathe" by one of my fellow fibromite bloggers - VinaMist.  She nailed this phenomenon right on the head!
"It amazes me how people like us with chronic health conditions have an "acting" mode. Where we can just snap into this other person outside the home and inside our homes we crash."  
It's so true.  In fact, I'm due at a party in a couple of hours and really don't feel like going because I am not up to being "on" and behaving "normal" for other people's sake.  I have been in pain for several days and haven't had time to really crash yet.  But I hate to cancel at the last minute - I just don't want to be one of those people who lets others down (typical fibro personality). 

So now I'm faced with this choice: do something to please others, or do something that helps me.  I hate this choice.  I suppose I can push off the crashing for one more day.

I'm going to have to put on the Happy face now...
(Thanks to Maddie F for the photo.)

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.