Monday, December 29, 2008

still searching for peace with fms

I haven't blogged much lately as I'm feeling pretty discouraged and I don't want this blog to just be about complaining, which seems to be all I'm doing lately. This disease is just so damn frustrating, and I'm really struggling with it right now.

A few months ago I had approached my doctor about getting some help with weight loss and her suggestion was for me to have a sleep study so we could find a way to improve my fatigue level, which in turn would help me be able to do more physically. Well I finally had that study this past weekend. It was what seemed like a very long night for me and I was thinking that they were going to ask me to come back again because I didn't sleep enough to get an accurate study. So the big surprise was that when I met with the doctor the next morning she said I actually slept like 94% of the night! Yikes! I don't know how to explain this and she looked at me like I was nuts...but I'm in a constant state of half awake half asleep. I can tell you all about them clearing the roads outside during the night, about the tech chatting on the phone in the next room, about how the tech was hooking up a cpap to the other patient next my back was hurting so I tried to sleep on my side, but my legs hurt so I switched to the other my mind wouldn't stop running so I just said the serenity prayer over and over and over again in my head. I was soooo exhausted after the study I was falling asleep waiting for the doctor...I went home and slept for 4 hours that afternoon and then went to bed at 7:30 pm and slept until 9:00 the next morning. So I ask you? how do their readings show that I slept normally???? It doesn't make sense. Oh and the other thing...they also diagnosed me with a new condition...PLMD "periodic limb movement disorder" which is basically like a milder form of restless legs syndrome and with that new diagnosis of course, comes yet another medication.

I'm feeling pretty dejected and lost at this point. What do you say when for the most part the test was normal and I'm almost asleep on my feet? I have another appt. with my family doc next monday to discuss this and by then hopefully the meds will kick in and help me not be disrupted by my legs jumping around all night. Hopefully! I'm to the point that I'm very seriously considering weight loss surgery. I'm on meds for reflux and high BP and I can't seem to get my weight down because i'm in so much pain...maybe if I could get surgery and get my weight down that would help with getting off at least 2 of my meds and getting moving a little easier and with less pain. I just don't know...but i'll talk to my doc about it all.

So while this post isn't a rant it certainly isn't all that positive either, but reality is that this IS my life with fibromyalgia, and until I can find some better alternatives to improve my health I'll have to find a way to make my peace with it...

still searching for peace....



Jasmine said...

Trust your instincts, not their results. Equipment can malfunction, records can get mixed up. If you have doubts you have every right to get a second opinion. Wishing you well :)

Kathy said...

I think you might want to talk to me. I am a Nurse, I also live in Anchorage and used to have the Anchorage CFS and Fibro Support group here in town.

hobbz said...

Most definately Kathy! My email is

Prof Sherlock said...

I just found your blog and I hope you update how you're doing. I have three friends who did weight loss surgery and it's not an easy surgery or recovery. The stress and trauma of surgery could make the fibro worse. I've had quite a lot of joint reconstructions in the past 20 years because of arthritis and ehlers-danlos and my fibro always go worse after surgery.

I understand what you're saying about the weight but honestly I'd try other solutions first. A good nutritionist who will coach you on a daily basis works wonders. I put on 40 pounds after taking prednisone off and on for two years. Finally I went the nutritionist route and for the past three months have lost about a pound a week. One pound a week doesn't sound like much but two things to remember here. One is that it's doable. The second thing is that it's 52 pounds in a year. That's what I need to lose. And I'm 15 down since I started three months ago. I gained a bit over the holidays but I've lost it since.

Get several opinions before doing the surgery. Talk to at least two rheumatologists and two surgeons who do the surgery. If they don't know about fibro, then find others who do.

Good luck to you. Please keep blogging so we know how you're doing. Visit my blog sometime if you get a chance.
Prof S

Donimo said...

I haven't dropped by in awhile because of my house being toxic due to new carpets. I can't really be at the computer for long, but I wanted to comment on your sleep study and the weight loss surgery. I have FM and have one a sleep study. I had really bad insomnia for 5 months. I was surprised as well when they said that I slept overnight in the lab. here's the deal: people with FM have weird brain wave patterns at night: you're asleep but you have Alpha-wave intrusions into the deep sleep Delta stage. This means that you're rarely getting the kind of non-dreaming, deep sleep where your muscles are totally flaccid. This is why FM muscle pain is so bad. I don't know how we fix it. Some people can take low dose tricyclic antidepressants at night to deepen their sleep; however, many people (including me) find that these drugs make you too fatigued to function during the day. Maybe your doc could tell you what your brain waves were like and maybe he/she will have a suggestion for you. But you're not crazy!!!

As for the big surgery, I would second the Prof's opinion: FM makes it hard to recover well from surgery. I know it's a tough cycle this pain/weight thing... but I do worry about FM being exacerbated by surgery. Just my opinion.

And, your posts are not rants. This is life with FM and your writing helps connect us and inform us and maybe it helps you get things out. That's all good.

Take care...

Gyles said...

Well, I don't actually consider this is likely to have success.
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