Friday, June 10, 2011

Fibromyalgia is Such a Fickle Disease

Having fibromyalgia is much like dealing with a teenage girl. Not only can you not count on what may be the most important thing in her life tomorrow, you can't count on it to last an hour.  The majority of the day yesterday my pain was Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely. That's where it was when I got up this morning. I sat on my kitchen stool to fix Bill's lunch and took my morning medicine.  When he left for work, I went back to bed and slept another hour and a half.

When I woke up, I felt like a different person. I don't know why it surprised me because on Tuesday it had changed like that while I was shopping. I've taken it easy today and my pain has stayed around a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. I am really excited that it's low because tonight I'm going to have a repeat sleep study.  I'm afraid that it would have been very hard to sleep with all those electrodes stuck in my hair and in a strange bed if my pain was up.  Of course, being as fickle as fibromyalgia is, it could change between now and 8pm when I check in at the sleep study center.

I had a sleep study probably five years ago because Bill was desperate to find a solution to my snoring.  He was on the road for work and roomed with a guy with sleep apnea.  During the night this guy became disconnected from his Cpap and Bill woke up to an all to familiar sound.  When he came home we went to see a sleep specialist and sure enough, that was the problem.  It was so good to get a good nights sleep! The entire family was grateful to get one as well.

I am having the sleep study tonight because the ultrasound of my heart showed that I have an enlargement of my right ventricle.   My cardiologist said that normally this is from sleep apnea.  I truthfully don't understand why he is having me retest since I've already been diagnosed but I trust him to be doing the right thing. If I can remember it, I'm going to ask the people at the sleep center why.  

I've had so much testing done recently trying to find out exactly what is wrong.  My edema isn't just edema, it's lymphedema. If compression hose and specialized lymphedema therapy doesn't solve the problem, then I'll have to see a vascular surgeon.  I still don't understand all I've read about it but apparently there are valves in your legs that open and close to allow the fluid to circulate through your body.  Lymphedema is caused by those valves not functioning properly.  I am a high risk for developing the skin infection called cellulitis. I already have what looks like a sunburn from half way down between the knee and ankle on both legs.  Many days I have what is described in medical writings as a 'tight, glossy, "stretched" appearance of the skin'. When my legs are tight like that, they literally weep fluid out my skin.  At first it was a minor annoyance but within the last month it has gotten to the point that the fluid literally puddles on the floor under my feet.  Now we are trying to figure out why I have this problem.

Next month I'm going back to the neurologist because my cardiologist wants me to have a MRA to clarify the findings of the MRI that I had several weeks ago.  My cardiologist isn't convinced that the ischemic changes that showed up are from past ministrokes.  The MRA will either confirm that I have had the ministrokes or that I have multiple sclerosis. 

It would be hard enough going through this testing for a "healthy" person.  It's a huge challenge going through it with fibromyalgia. I can't not go for my appointments or tests even if my pain is at the top of the chart.  They are too hard to schedule in the first place without trying to reschedule them.  I will be so glad when we finally have answers.  In the meantime, I'll continue to trudge on through with my fickle fibro.

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