Down and Ow

June 9, 2008

I’m having a horrid flare. You know the drill– insomnia, pain screeching through every nerve ending, exhaustion, fogginess. I’ve given up on trying to figure it all out. Well, actually, I’m lying– I’m still trying to figure it all out.

I was up at 4:30 this morning, hurting and sleepless, so I did some searching for fibro information on the Web and found this great site— 100 tips for coping with fibro. I like the author’s route of changing diet and nutrition, and of going “au naturel” as far as medications. I’m going to start taking OPCs, which are a type of antioxidents, and I’m also going to try cutting out foods from the nightshade family for a while to see if it makes a difference. This includes tomatoes, potatoes, green peppers and eggplants. Sigh…no more baba ganouj.

I’ll keep you posted on this. In the meantime, I’d love to hear anyone and everyone’s best tips for dealing with fibro. Here are some things that I can’t do with out, and one thing that I want really, really badly.

Bath Therapy Bath Salts: You can get these at any drug store, at Target, Wally World, etc. A long soak in a bath of this stuff really does help me.

Heating Pad: I named my heating pad Antonio Banderas, which makes me feel a little less old ladyish when I lie on it. I really hate heating pads, but it does bring relief.

Lidoderm Pain Patches (by prescription): Make sure it’s Lidoderm, as some of the others have um, killed people. This is great for dulling pain in a localized area. You’re only supposed to use one at a time, but I often cut mine in half so that I can get relief in more than one place at once.

Massage: Can’t afford this often, but a really good massage therapist can work wonders sometimes. One day, when I’ve one the Mega Millions Jackpot, I’ll hire a live-in personal masseuse. I’ll call him Antonio Banderas, and change my heating pad’s name to Bud or Mac or something.

Love: Being around kind and loving beings makes my life gentler, and often eases things. My boyfriend and my cat make me feel all warm and fuzzy inside, and I’ve recently gotten a new little puppy that sits on my lap and warms my heart. Gentleness really does help combat the harshness of daily life.

Memory Foam Mattress Topper and Pillow: These haven’t helped so much lately, but for a few years there, I would not have been without them.

Osim IMedic Massage Chair: At about $2000, I simply can’t afford one of these, but this chair is amazing. It’s available at Brookstone, and I recommend that you try one out if you have a store nearby. Honestly, it’s fantastic, and I’ve actually driven to Brookstone a few times to use one when I’ve been hurting badly. My reason for this has been to experiment, to see if it makes a difference when I’m hurting a lot. It does make a difference– it really does. Now, if Brookstone would just gift me with a chair in exchange for this plug, I’d really appreciate it.

If I think of any other things that you haven’t heard a thousand times, I’ll let you now. In the meantime, what helps you?

Am I spinning my wheels, trying to find patterns in my fibro? Am I wasting my time trying to figure it all out? This roller coaster ride really, really gets to me sometime. Today is one of those sometimes.

Actually, it started at about 6:00 this morning. I woke Tom (and myself) out of a sound sleep by screaming out in pain. I don’t think I’ve ever done this before. I was sleeping so deeply that I can’t remember what it was all about, but I remember feeling this searing pain in my knees, and just shrieking in agony. This was real pain, not a dream. It was kind of like being under anesthesia, that “twilight sleep” where you can remember what’s going on, but you’re sort of out of it too. I went back to sleep, and when I woke up, I felt fine.

At some point today, I noticed that I was having no pain. None whatsoever, and I realized that I’d been feeling that way all day. I was so happy. That’s the one thing about fibro. You start feeling extremely grateful for every good moment.

Of course, my brain started this confused inner-dialogue. I want to work. I need income. And when I start feeling good, I think, “How in the hell am I supposed to do this?” Is there a temp agency that will work around my pain schedule? My exhaustion schedule? I gave up trying to figure it out, and just went back to doing some writing.

A couple of hours later, I went downstairs to give my eyes and my brain a break. I laid on the couch, talking to Tom, and as we were talking, pain once again began descending on my body. Within minutes it felt as though it was searing through to my bones. It moved around, and the only way I could describe it to Tom was that it felt like a flaming pinball, bouncing around inside me.

Let me explain that I have to really, really be hurting badly to even mention it to anyone else. This was so strong that it was making me cry. And it was hurting in the same old places, but different ones too. My hips, my butt, the tops of my knees, and in the joints at the top of my legs, all the way around. I just lay there for a while noticing it and crying a little.

The other thing is that I have to be in excruciating pain to ask Tom for a massage. I’m determined not to make my problem his any more than I have to. But this was bad, and I asked. Usually, I want a deep massage. It hurts like hell, but in the end, I usually feel some relief. But this time, he just gently started rubbing my body. No pressure at all, just rubbing my skin. He rubbed my legs, my bootie, my stomach– there was no real rhyme or reason to it, it was just gentle touch. Immediately, I felt the pain begin to drain away from my body. It was as effective (if not more so) than a deep tissue massage. At some point, he applied some gentle pressure to one of my legs, and it made me cry out in pain, and my leg sort of spasmed. But the gentle touch actually worked.

So I’m feeling better. Drained, but better. I don’t think I’ll ever understand the way that this works, but each time something new and good happens, I feel a little bit of hope. And hope is what keeps me going.