Oh, sweetie. That sucks! It is my understanding that fibromyalgia is systemic - like lupus. But other than that, I don’t know much about it. I hope you get some relief (either through the ass-kicking, exercise or good old fashioned better living through chemistry) soon.

xoxo

Thanks, Margi. I have a feeling that, out of all of them, the ass-kicking would be the most psychologically helpful… but probably the least likely to happen. I just do NOT look good in prison orange.

Okay, a couple of thoughts.

First, would it be terribly smug of me to say “I told you so”? Your symptoms sounded so strikingly similar to Red’s, I knew it had to be related. The good news is, the way you feel now is as bad as it gets - fibromyalgia is not progressive or degenerative, since essentially it’s at least in part caused by an oversensitivity to pain in the brain.

Red suggests that you talk to your physician about Tramadol for the pain. It’s a non-narcotic painkiller in the analgesic family, and other than some minor nausea, has no other serious side effects (like organ damage from narcotics, for example). Red also is suggesting Mirapex as an adjunct medication - fibromyalgia has associated problems with sleep, such as lack of or restless leg syndrome, both of which are due to the pain issue. Mirapex will treat a lot of that problem, and you’ll even be able to sleep through your husband’s snoring (Red sleeps thru my snoring, for example). Fibromyalgia also results in a lower amount of dopamine in the brain, which Mirapex addresses.

Red also suggests that you explore tricyclic antidepressants as well. As I recall, you tried Cymbalta with some pretty bad results, but keep in mind that each one would affect you differently. The main reason for this is that people that suffer from fibromyalgia have a strong tendency to have way too much serotonin, as with any chronic pain illness. Tricyclic antidepressants also address that as reuptake inhibitors - in essence, it’s a prescription of one medication to address problems resulting from another issue.

I had no idea the restless leg problem was related to fibromyalgia! I started having that a couple of months ago, along with sleeplessness. It’s not just due to pain: sometimes I’ll start nodding off while reading, then the instant I turn the light off my brain goes ZOOM! and I can’t fall back to sleep. I hate that!

Mirapex helps sleep through snoring? I’m all for that!

Unfortunately, experience has taught me to stay away from anything that messes with my serotonin levels. Not only is it involved in liver regeneration — which, thanks to that whole experience with Cymbalta, is going to be a lifelong problem for me — but whenever I’ve taken a medication that toys with it I get a bit, um…. wacky. Yeah, we’ll go with that word.

But I’ll definitely ask about the Tramadol and Mirapex. Thank Red for me, please!

Damn, hon. I’m sorry to hear that. I know how you feel…I have chronic fatigue syndrome. They can’t diagnose me with fibro because all of my pain can pretty much be explained, but it still sucks.

Hubby and I are going to buy a treadmill or something of the sort, as both of us want to start exercising and walking is a good way to do it, we just live in a crappy neighborhood, so it’s safer to do it indoors. Although, if I can barely get out of bed, how do I get on the treadmill?

That’s exactly how I feel about being told to exercise, too, Lisa. I’m so darned tired all of the time, and so very achy, that the thought of exercising, even lightly, seems overwhelming. Not to mention that every time I do exercise I’m absolutely exhausted afterwards — and as a homeschooling Mom I do NOT have time to nap every day. (Though I sure wish I did!)

I’m with WG on this one, I hate knowing I was right but I am glad you finally have a diagnosis. As far as the exercise goes, I’d wear a pedometer for a few days keeping track of just how much activity you actually get. Some doctors seem to think that just because we are in pain we do absolutely nothing all day. My neurologist takes the “push when it hurts and pace when it doesn’t” approach which is so difficult. When it doesn’t hurt you want to accomplish so much more because you never know when a flare up is going to sneak up and kick you in the arse but you inevitably end up pushing yourself right into a flare-up just by pushing instead of pacing on a good day. If you give a memory foam mattress or mattress topper a try be sure to let me know how it works for you. I’ve tried the foam egg-crate type mattress topper and decided that there was no way I’d ever sleep on foam again as the heat the foam retained made the fibro night sweats that much more intolerable.

Chelle, have you tried memory foam? Most egg-crate mattress toppers are a latex-based foam, which Red is violently allergic to. Memory foam’s very, very different, and even Wal-Mart now carries mattress toppers that are up to 8″ thick. Memory foam doesn’t trap heat the way latex foam does - you’re right about the effects of heat.

Kate, I showed Red your reply, and she suggests also that you try yoga and/or belly dancing as a form of exercise. The former is really good for flexibility, and can be done at your own pace. The latter is really good for strength in a lot of very critical places that people don’t usually exercise when they have a chronic pain ailment. Chronic pain sufferers generally tend to exercise large muscle groups, because the exercises for those tend to be pretty straightforward, and then neglect the smaller, supportive muscle groups that keep everything together.

Besides, belly dancing has other benefits. I assure you VH will appreciate it as much as I do.

Oh - Red also says that I should tell you about “fibro fog”, which is a common problem with chronic pain in general and fibromyalgia specifically. Essentially, it’s what happens when the brain is a) overloaded with serotonin, from the body trying to deal with the pain, b) overtired from lack of sleep, caused by the overload of serotonin, from the body trying to deal with the pain, and c) stress from being overtired from lack of sleep….you get the picture. Mirapex will go a long ways toward cutting that problem off at the knees. Red pointed out to me how much of a difference simply getting enough sleep made, and she’s right.

Red also says that I should tell you about “fibro fog”, which is a common problem with chronic pain in general and fibromyalgia specifically.

Huh? Sorry. I got distracted.

No, seriously, that was one of my first hints that something was wrong. I’ve always been *VERY* mentally sharp. I’m the kind of person to whom you could rattle off a list of fifteen items and I’d remember at least 13 of them, while also listening to the news and making dinner. But in the past 6 months or so I’ve found myself so scatterbrained and …. um…. what’s the word? Oh, yeah, confused about whether I was suffering premature senility or a brain tumor.

I’ve got an appointment with Madame Doctor next week, and I guarantee I’m going to walk out of her office with a prescription for Mirapex, and possibly one for Provigil, which would definitely address both the fatigue and the brain fog. If I don’t have one or both of those, then I guarantee I’ll have a new doctor.

That was also Red’s biggest complaint….like you, she’s exceedingly mentally sharp. “Fibro fog” is literally that - it’s a state of exhaustion that leaves you awash in a sort of going-through-the-motions haze, unable to remember details, and sometimes going so far as actually lose track of conversations while in the middle of them.

It’s no joke, either. Perhaps you remember my posting or alluding to Red’s vehicle wreck about a year and a half ago? A combination of exhaustion, a long drive on bad mountain roads, and having overdosed on a neurotransmitter booster that she still takes rendered her unconscious at the wheel for just long enough to hit the side of a mountain at 50+ mph. She and the kids were all okay, thanks in part to the fact that I have always terrorized the children about what could happen if they weren’t wearing their seatbelts, partly due to the airbags which, thankfully, I’d reinstalled correctly, and partly due to the miracles of modern medicine. Red’s littlest one was LifeFlighted to OHSU and underwent abdominal surgery due to internal bleeding and a cracked pelvis.

My point is that the haze that chronic pain leaves you far more vulnerable to the whims of the things and people around you than most people are willing to admit. There are a number of support groups out there online that have TONS of links to most-current-research information, and I can certainly send those to you if you like….or have Red do it, since it’s her thing. You’ve always struck me as the type that likes to Know Things And Do Research To Have An Informed Opinion.

What’s your hubby think about it all? I’m curious as to his take on it, if you don’t mind sharing.

Oh, and by the way - you’ll be glad to know that your need for coffee first thing in the morning isn’t just your imagination at work. Studies have shown that a good stiff dose of caffeine does wonders for sufferers of chronic pain.

So drink up.

That bit about the coffee might be the best news I’ve read in a while. (Last year’s best bit of news was the announcement that Starbucks was putting a counter in at one of our grocery stores.) Yes, indeed, I do love my coffee.

The type who likes to “Know Things And Do Research To Have An Informed Opinion”? Oh, yeah. Very much so. But I hate online groups. Hate, hate, hate ‘em.

Chelle, that’s an excellent suggestion about the pedometer. My doctor definitely does seem to think that I’m more of a couch potato than I actually am. She doesn’t seem to remember that a parent of a 7 y/o boy never really gets to sit still all day long.

I’m running up and down two and sometimes three flights of stairs at least twice an hour (and even more often than that on days I do laundry), walking all over the house picking up messes and putting things away, standing for 30-minute stretches while cooking dinner, and doing whatever walking is involved when we go to the store or playground.

And that’s on days when I’m in pain. Like you pointed out, when I’m not having a flareup I’m more active. Granted, it’s not as much as someone doing all of that in addition to aerobics, but it’s a far cry from sitting immobile all darned day.

I doubt I try the memory foam mattress. I bought one for my son’s bed a while back and, although he loves it, the few times I’ve laid down with him I’ve found it to be less comfortable than our Sleep Number bed (which I’m not all that big a fan of). I have a feeling the night sweats would drive me nuts on a foam topper, too.

Oddly enough, a lot of what I’ve found lately suggests the use of low-dose stimulants to treat fibromyalgia. Apparently, they not only counteract the fatigue but also help with the “brain fog” that WG mentioned. They also work on the dopamine levels without messing with serotonin, which would accomplish the same thing as the antidepressants that WG mentioned.

I figure, hey, I’m a BIG fan of stimulants… or was in the early 90s (ahem). I’ve also noticed that when I take meds with pseudoephedrine for my allergy-related congestion, I tend to feel a bit more perky.

So if she’s going to insist on exercise for pain (which the Motrin 800s she’s prescribed do nothing to relieve) then I’m going to demand something to help with the mental and physical exhaustion to make complying with her instructions a bit easier.

I’ve read of the great success many are having with stimulants and antidepressants. Unfortunately I have two things standing between me and stimulants, the bad heart valve and a mood disorder that only rears its ugly head in the presence of stimulants. They turn me into Jeckle & Hyde gone horribly wrong (think of the cartoon version where he keeps switching back and forth in the blink of an eye). Makes treating the asthma tons of fun because there isn’t a single asthma medication that isn’t a stimulant that’s when they bring on the mood stabilizers. Currently the one my neuro-shrink has me trying, topamax, has shown some success in treating FMS as well and I can see a difference. It has my flare-ups cornered to that lovely hormonal time of the month.

Funny you should mention the Jekyll/Hyde thing: that’s exactly what messing with my serotonin levels does to me, with similar “blink of an eye” speed.

Stimulants, on the other hand, make me a happy little camper. One that’s very productive, relatively pain-free, energetic and not all that interested in food.

Some days, I really do feel like hunting down the legislators who outlawed mini-whites and asking them how on earth they‘d have the energy to clean their own homes, take care of their own children, cook their own meals, work AND have something of a normal life on top of it.

As someone wrote, “How about that? Better home management through chemicals.”

It’s so funny that you should mention the mini-whites. My mother was absolutely neurotic about keeping her home clean. Guests couldn’t excuse themselves to use the bathroom without coming back to find their drink gone and the mug or glass already washed and put away. My sister and I had the same conversation as that author did with her sister. My mother had a passion for black beauties and blue diamonds. Until they nearly killed her with sky high blood pressure. June Cleaver, Donna Reed… please, they had their mother’s little helpers.Every generation did until the late 80’s & early 90’s that ushered in the self-help and group therapy era.

Ironically, it also ushered in an era where women find themselves wondering how to measure up to their mothers’ standards when, as you pointed out, that generation had plenty of “mother’s little helpers” to get them through their day. (Oh great. Now I’m going to have that Rolling Stones song stuck in my head AGAIN!)

Mine never did take meds to keep her house spotless. She had child labor (me) and what I now realize was a distinctly bipolar personality to help her get things done.

Red usually starts the day with a cup of coffee. Or two. Or three, on really cold days. She occasionally will start the day with an energy drink containing taurine, L-carnatine, ginseng, guarana, and caffeine - Tab Energy Drinks are exactly the right size, are pink and made for women, and are low in carbs, sodium, and other assorted bad stuff. Most energy drinks aren’t (such as the ridiculously oversized Monsters I drink from time to time).

Anyway, we’ve found that the use of those has a diminishing effect on the amount of pain medication she needs, which is a good thing all around.

Tab Energy Drinks are exactly the right size, are pink and made for women….

You DO remember that I’m a die-hard Tab soda (the original) addict don’t you?

That pink stuff is sacrilegious.

But I’ve got a Bialetti and I’m not afraid to use it. In fact, I *love* using it. I just have yet to find a bean worthy of the time it takes.

Any suggestions on those?

I did not recall that bit of information, no. That’s funny.

Ok, I must own a Bialetti. That’s just all there is to it. As for a bean, actually, yes, I do have a suggestion. Allann Brothers Coffee based in Albany, OR has a 100% Aged Kauai blend that is really good, but they don’t make much of it and it’s usually gone very quickly.

You’re the one from Hawaii, you should know coffee!

I was so excited when we first arrived to find that the Ft. Leavenworth commissary actually stocked Tab soda, the original one. I bought up every 6-pack they had, and every time VH or I went to the store I cleaned them out again.

At one point, I had a shelf full of the stuff, which VH used to call my “Preparing for Armageddon Supply”. I eventually realized that with nineteen 6-packs, it was probably safe to stop stocking up and start drinking it.

Wouldn’t you, as soon as I ran out the commissary stopped carrying Tab? I’m livid.

The Bialetti is amazing: it makes a wonderful cup of coffee, and it’s unbelievably easy, too. I put mine on the stove before jumping in the shower, and by the time I’m done so is it. Love it! Just don’t put it in the dishwasher if you want to keep it nice and shiny.

Unfortunately, it looks like that place is out of Kauai beans, but I’ll be sure to check back with them. Their “Breakfast at 11:00″ blend sounds yummy, though!

devices, and no doubt should have served something stronger than Mojitos to dull the pain of listening to someone talk without ever once pausing to breathe. Something else I didn’t anticipate: just how great a toll both my legendary allergies andfibromylagiawould exact the day after the party, as well as the day after that. Oh, I’d taken a Benadryl but only one: I didn’t want to be doped up when my company was here (though after listening to 3 hours of a monologue I now regret that stance). And, of