nix5149

My name is Nikki, but most people just call me Nik (I don't know why, but I'm going with it).

I was dx'd with fibro on 2/5/07. I first learned about it a few years ago after making the acquaintance of a gal with fibro in cat rescue. She described it as being "like really bad PMS all the time." That's pretty accurate, but I'd add "feeling like you're coming down with the flu all the time." During the five years (2001-2006) that I was without health insurance, I managed to cadge antidepressants from friends who were overprescribed. This gal gave me her Cymbalta and it was a godsend. I felt great for the three months I was able to get it. That was my first real clue that I might actually have fibro. Mostly I got by on Effexor and Lexapro samples. (I've been on antidepressants since 1989 for post-traumatic stress disorder, starting with Prozac, which I halted for eight months in 1994 and then had a nervous meltdown the night before my Kaiser kicked in and I went back on Prozac the next day.)

Even though I have the requisite history of childhood abuse (hence the PTSD), I believe my fibro was triggered by the death from prostate cancer of my stepdad in 2000. I was in no way prepared for the profound spiritual trauma of watching a loved one waste away and pass like that. I was never quite right after that. Also, about six months after that, my old cats started dying off -- I lost five in a year and a half. B*tch-slapped by the universe.

In the spring of 2000, I started having episodes of headaches with severe nausea when sitting up. Kaiser advised Naproxen and Dramamine II (meclizine).

Then I started having what I later found out are called "brain darts." It was like electric shocks behind my eyes. I was on Effexor at the time.

In 2001, I started having headaches that I initially thought were tension headaches due to work stress. I took so much Advil that my stomach started hurting so I went to urgent care, thinking I had an ulcer. They discovered I had a sinus infection and I was given antibiotics.

Then I quit that job and was on my own working part-time jobs to make ends meet for the next five years.

The sinus headaches -- oh, like migraines they were now -- came back with a vengeance one fall a few years ago (the time gets away from me). And a dry infected eye -- I had to wear a patch when I wasn't putting warm compresses on it, and it was excruciatingly photosensitive. I had to resort to using veterinary ophthalmic antibiotic ointment from the cat rescue.

I've never been a morning person, very much a night person, but I started staying up until dawn on the weekends to maximize my quality time. Then I'd sleep 14-20 hours and feel like crap when I woke up, a real zombie. Weekends were the worst; I felt like I was sleeping my life away. I was blowing off social commitments because I just couldn't wake up. Couldn't is the operative word here. People just don't seem to get that.

Now I've got a good job with benefits (Kaiser), and the first thing I did was schedule a complete physical. All my blood work was fine. My pap was clear, my mammogram was clear, my ECG was great, my sinus scans were clear, my lung scans were misinterpreted by the radiologist as showing COPD, but subsequent pulmonary tests showed 100% lung function (much to my surprise). I even had an HIV test done just to know I covered all my bases - negative. The doctor I saw was great, but he was a temp. I told him I suspected I had fibro, and he poked the tender points and said it was a real possibility and referred me to Rheumatology. I got legit on my anti-depressants (Paxil) and they refilled the Xanax I've been taking to get to sleep (I won't say where I'd been getting them over the years ).

I'm astonishingly healthy for a sedentary 48-year-old female smoker with a family history of heart problems and breast cancer. My gallbladder's even fine, and my mother and aunt both had theirs out by the time they were my age. Strong like bull, healthy like horse -- so why do I feel like crap all the time?

The primary doctor to whom I was assigned had some more blood work done to rule out the inflammatory diseases like CFS, RA, lupus, etc. All clear.

When I finally saw the Rheumatology NP (who has fibro herself), she confirmed the dx, tested me for B12 deficiency (nope, but I got the shot anyway), prescribed Robaxin (methocarbamol, a muscle relaxer) to help me get some restorative sleep. My boyfriend said I quit punching him in the back at night after that.

I was good for a while, but it seems like I adapt to every treatment they give me.

I got a puppy in June, and she was miraculous for getting me up in the morning for the first couple of weeks of housetraining, but then she got independent enough to be in the yard on her own, so when she whines to get out of her crate, I zombie her to the back door, let her out, and zombie back to bed. I've been known to play "Beat the Clock" with my alarm for two hours. I'll turn it off sometimes without even waking up. Even when it was across the room -- zombie over, turn it off, zombie back to bed.

Kaiser will only prescribe Cymbalta through their Psychiatry department, and I don't have that coverage. Lyrica isn't in their formulary. When I called a couple of weeks ago in desperation -- the fatigue and fog were so bad, and I'd been getting to work at 2:00 pm again, which is two hours too late, I was depressed about it -- they said I could have Neurontin, which is like Lyrica, which is like Cymbalta (they say). They also upped my Paxil and Xanax. That was great for a couple of weeks, but now I'm back to fatigue, fog, oversleeping, and creaking around the house upon awaking like I'm 80 years old.

This sucks. If I wasn't depressed before I got this condition / syndrome / disease, I sure would be now. It's very frustrating.

I tried some herbal stuff, ashwaganda in the evening and maca in the morning, but I adapted to that, too.

The primary blessing I have is that my mother's best friend has fibromyalgia, so I don't have to do a lot of explaining. This gal has loaned me some books that have been useful. My boyfriend's been great -- he is really supportive and helpful, has made himself indispensable.

I've found massage therapy helpful in the short term in releasing myofascial trigger points in my sternocleidomastoid (SCM) muscle to open up the sinuses for draining. Does anyone else wake up with severe edema around their eyes? My Rheumy NP says it's just allergies, but I don't think so. On a good day, I've got bags under my eyes, and the bad days are when my upper eyelids are so swollen (like I've been crying in my sleep) that I can hardly see, but it gets better once I get vertical and moving around (positional drainage). Sometimes I can't focus my eyes to read (major bummer). My typing can get pretty bad, with spastic mouse finger (inadvertent double-clicking takes me places I don't want to go).

Fortunately, my employers are supportive, but their patience is wearing a little thin. They would like eight hours out of me, and I would like eight-hour days reflected on my paycheck. When I can, they let me work at home. But they're taking October off to go to Italy and I'm supposed to hold down the fort. That will be a real challenge.

Exercise is difficult, since I'm pretty agoraphobic. I know that's a problem. And the smoking. My diet sucks, because if it's in the house, I will eat it (Xanax midnight munchie mania). I do get fed pretty healthy stuff at work, though.

I've been having a flare up this week, the fatigue and fog are pretty bad, I'm having a lot of anxiety despite the meds, and I'm just feeling kinda defeated by this stupid condition / syndrome / disease. I'm fortunate that the pain's not that bad; I'd describe it more as extremely achy rather than painful, but it's from my shoulders down to my heels. Yesterday I was tiptoeing around in slippers (working at home).

The hardest thing is that people just can't understand that I'm such a comatose zombie before noon. It's not that I won't wake up, I just can't. Can't! It controls my life and I hate it. It's gotten so much worse the past two-three years.

I'm just so glad to find people who can relate.

Nik