… d’Nile.  You know–denial. I’m thrashing in the reeds along denial’s shallow edge, vigorously shaking my head at my recent fibromyalgia diagnosis.

Because this constant, aggravating pain I have in my hands isn’t fibro, it’s RA. The persistent dull ache in both my hips is a symptom of bursitis. Not FMS. I don’t have pain “all over,” just in those two specific spots.  So here I am, sitting with my arms crossed tight in the bullrushes. I deny fibromyalgia. Its facts are the round holes to my square pegs.

I don’t have fibromyalgia. That’s my solid opinion after a couple of weeks ofmulling over Dr. McA’s surprising words over following my appointment with him. “You have fibromyalgia,” he said to me, causing instant jaw-drop.

No, I don’t. Sure, when he tested the fibro tender points on my body, his pressing fingers caused me to wince a couple of times. One of the points was my knees. Both of them have flared intensely but very briefly several times over the last couple of months. Tender? Sure. But I’m confident that pain was from rheumatoid arthritis. It felt like RA pain, centered deep in the joint, throbbing angrily at rest and shrieking if I bent my knee or put my weight on it.

Your garden-variety rheuma-dragon pain. His teeth were in my knee.

I know Dr. McA simply whipped the fibromyalgia diagnosis out of his hat because my last several blood test results indicate that my RA is in clinical remission. My pain doesn’t fit the test results, so it has to be from fibro, the syndrome that consists entirely of pain that can’t be clinically explained. I’m guessing that he was grasping at straws and found one.

But those of us who actually live with the effects of RA in our bodies know that “remission” is one of those weaselly words that can mean different things at different times and among different people. You can be in “remission” but still hurt like a you-know-what. Or not. I’ve experienced “remission.” It lasted about six years and during it, I was almost entirely pain-and-other-symptoms-free.

So this time, my blood tests might be shouting “remission” but my rheuma-dragon hasn’t got the message. Nor has the bursitis-wyrme who’s chewing on my hip bursae, keeping them constantly inflamed and aching. I don’t know why they haven’t stopped aggravating and disabling me. Maybe they’re deaf.

Anyway. I don’t have fibromyalgia. And I’ve had a couple of fairly decent weeks since writing the two previous posts. Except for a few harsh flares, my hands and hips have kept the volume turned nicely down–enforced by pain meds, of course. When I stop them the volume ratchets up quickly. I can live with that. I’ve been sleeping very much better since my nortriptyline prescription was finally and copiously refilled.

And I’m going to ask Dr. McA to strike his fibro diagnosis from my medical records. Why? First, because it’s in error. Second, because until medical science can take the word “syndrome” off the name, a diagnosis of “fibromyalgia syndrome” implies that the sufferer is either a whiny hypochondriac or a malingering drug-seeker of low character. I believe that the vast majority of those diagnosed with fibro are neither; that their pain is real and devastating. But a lot of people both inside and outside the medical profession believe otherwise. And that’s why I want this mis-diagnosis struck from my records.

It’s a negative I simply don’t need.

What would I do without my morning dose of Mouse?

I stretch out my finger, she stretches up her nose; we touch, her motor revs, a chuckle burbles from my lips. Under my stroking hands her fur is cool, downy as dandelion floss and just as summer flyaway.  Her small head pushes purring into my cupped hand, a demand for more of this fine, dawn massage, this fine schmooze that starts our day with feline and human sweetness and smiles.

Heartfelt thanks to everyone who commented on the previous post. I can’t tell you how much better; how encouraged; how much calmer and easier I am because of your thoughtful words and loving support. May you all walk in peace and find sudden joy today.

–Wren

Morning Mouselight

During my appointment with him Saturday (finally!), my rheumatologist reviewed the results of the blood test I had done back in early April. It was full of good news, he said, smiling.

I ratcheted my dropped jaw closed. I’d been certain that this blood test was not going to show anything good, given how much constant pain I’ve been in since my last rheumatology appointment in January.

Everything looked just fabulous, said Dr. McA. My sed rate was normal. Liver enzymes were lovely. As the latest part of a trend stretching out to about 18 months, he said it appears that my RA is actually in drug-induced remission. “The meds are doing exactly what we hoped they’d do and you’re tolerating them well,” he said, still smiling.

“But …”

“Now, it’s clear that your trochanteric bursitis is not improving,” he went on. “After several sessions of PT and several rounds of steroid injections, oral and dermal steroids, you’re still experiencing frequent pain. So I’m referring you back again to the orthopedic surgeon to explore possibly draining the bursae or removing them entirely.”

I sighed. Bursitis-wise, it has finally come down to surgery or resigning myself to living with the pain. Neither prospect feels very positive to me, but eventually I’ll need to choose. In the meantime, I remain hopeful that the damned bursitis will just go away on its own if I’m a very, very good girl.

The doctor turned away from the computer screen and gazed at me. “You have questions.” He darted a glance at the small notebook I’d laid on the corner of his desk.

I nodded and told him about the slowly increasing, constant pain I’ve felt in my hands and wrists. I told him about that bone-ache in my legs, which usually happens at night and is a comparatively new symptom in my long experience with the rheuma-dragon. I wondered if the Fosamax I’m taking for osteoporosis might be causing it.

He asked how I was sleeping. Not great, I admitted, but that was because I ran out of nortriptyline again. He promised me he’d remedy that. Then he looked carefully at my hands. He checked the range of motion in my various joints. It’s very good. He noted that I have no swelling. No deformities. I present with a body that backs up my blood test results. “Your RA really is in clinical remission,” he said again.

I managed to breathe back the sudden tears that pricked my eyes. I hate to cry. That really is all good, I said after a moment. Please don’t get me wrong. But my hands hurt literally all the time. My knees now join the chorus more and more frequently. The pain feels like rheuma pain, the kind that leaves me anticipating more and worse pain at any moment. It’s distressing and scary.

And what’s with this nasty ache in my leg-bones? “If I’m in remission,” I asked quietly, “where’s all this pain coming from?

Dr. McA started pressing various places on my body and limbs. Ouch—elbows were ultra-tender. So were my knees. There was slight discomfort in the other places he pressed on, but nothing worth getting excited over.

I have WHAT?!

“You have fibromyalgia syndrome,” he said in answer to my question. “Your symptoms are classic.”

My jaw dropped. The tears rose into my eyes again.

I’ll be honest, here. This concept just staggers me. It makes me want to find a cave I can crawl into and die. Worst of all, it embarrasses me. I know I shouldn’t feel this way, but the fact is that there’s a considerable portion (more than half, depending on which source you look at) of the professional medical community that dismisses fibromyalgia as a fantasy condition. These doctors and medical researchers believe that some hapless physicians, looking to offer some sort of diagnosis for their patient’s clinically baseless but persistently whiney complaints of pain, fatigue, insomnia, bowel problems, brain-fog and other various etceteras, just tossed all these phantom symptoms into a bag and made up an important-sounding name for them to satisfy their nutcase patients that they actually had something wrong with them without calling it what they really believed it was: hypochondria or plain, old-fashioned malingering.

This pain I’m experiencing isn’t my imagination. I’m not looking for attention or for an excuse not to work. I’m not drug-seeking. I’m not a shameful malingerer or a bloody hypochondriac. Not only that, I’m quite aware that there are many autoimmune arthritis sufferers who have also been diagnosed with fibromyalgia, and the pain and other symptoms they experience are no less real than my own.

Finally, I’m aware of the other half of the medical community that believes FMS is a credible diagnosis. The American College of Rheumatology is among the most prominent.

And yet … and yet.

“Fibromyalgia syndrome.” Wikipedia defines it thus: “From the new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; the term literally means “muscle and connective tissue pain.” The syndrome’s symptoms run the gamut from soft tissue pain, joint stiffness and painful tingling to intractable fatigue, chronic insomnia and brain-fog, among others.

“You’re experiencing soft-tissue pain, Wren,” said Dr. McA gently. “You have no swelling. No permanent disability and no deformities from your RA. Clinically, you’re in terrific shape right now. But you still hurt, sometimes very badly.”

He went on to suggest I look into gentle-resistance water exercise at a local warm-therapy pool. I didn’t tell him, but I’ve looked into that already. There’s only one pool like that in the Sacramento area (funded by Easter Seals) and it’s about 25 miles from Mom’s place and more like 50 from my home in the mountains. Either way, going to water exercise classes a couple of times of week sounds both expensive in terms of gas (in California, gas still costs anywhere from $4 to 4.50 per gallon) and time, considering our increasing traffic gridlock at all hours of the day.

So I guess I’ll just continue doing my bursitis exercises and try going back to the recumbent bike and doing low-weight resistance, slow repetition exercises at the gym. I ordered a Rodney Yee beginners yoga CD yesterday. (At least it will be fun to try and to watch. Wow, is that guy fit!) Everything I’ve read about fibromyalgia so far stresses gentle, daily exercise, sound nutrition for healthy weight loss and/or maintenance, and plenty of restful sleep as good, proven ways to treat symptoms. Some of what I’ve read also suggests cognitive therapy and therapy for stress and depression, as there seems to be a psychiatric aspect to the syndrome. I’m not sure what I think of that.

Well, yes I do. I feel humiliated whether I ought to or not. I’m working on that, too.

There’s a big part of me that refuses to believe this diagnosis. My pain isn’t “all over,” as it’s described in the research regarding fibromyalgia. I often don’t sleep well, but that’s more a result of my hip bursitis pain than anything else. And that can be mostly fixed by taking an appropriate dose of nortriptylene—which I do, nightly, as long as I can keep the danged stuff refilled. Dr. McA fixed that problem on Saturday once and for all, and I’m back on a three-month appointment schedule with him now. I’m not particularly fatigued; except for that deep bone pain in my legs and the bursitis, my pain seems isolated to just a few joints (not the tendons and muscles); and unless I’ve had several nights of interrupted sleep, I don’t experience brain-fog.

Further, as I said above, the pain I’m having in my hands, wrists and occasionally, my knees feels exactly like RA. Can I be in clinical remission and still experience rheuma pain? When I went into natural, drug-free remission 12 years ago, I had (with only two or three exceptions over time) no pain or other RA symptoms at all.

Dr. McA also told me Saturday that the x-rays he requested done on my hips show some osteoarthritic erosion of the femoral head on the right side. I am, as you might imagine, completely unsurprised. I’m already aware that I’ve some on-again, off-again osteoarthritis pain (and I guess, slow erosion) in the tiny joints at the tips of my fingers in both hands. That it’s showing up in my hip (and my knees? Hmmm…) seems par. I’m 55 years old. It happens. Our bodies do finally start wearing out; I’m no different than anyone else, that way.

Finally, we’re experiencing a very unseasonable (read freaky) cold front here in California today. The temperature has dropped from a late spring high of 99 degrees Fahrenheit two days ago to a forecast of 66 degrees today. Talk about rollercoasters! The sky is dark gray. It’s been either drizzling or raining since before dawn and will likely continue to do so off and on for the rest of the day. The barometric pressure has been dropping like a rock since late last evening; I spent one of the worst nights I’ve had in quite a while last night, my bursitis hips aching abominably and waking me up over and over again. It drove me out of bed for several hours. I took pain meds that finally eased it enough so I could finally get to sleep. My hands are hurting even more intensely than usual, too. Whatever’s causing that—the RA that’s “in remission,” wear-and-tear osteoarthritis or (sigh) fibromyalgia—it seems that the barometer affects them all. Goody.

I’m trying to wrap my head around this new diagnosis, friends. It frankly appalls me. I don’t want to believe it; I’ve just about decided not to until we see yet another “perfect” set of blood tests in early September when I see my rheumatologist again. And I wonder: What do those of you who’ve also been diagnosed with fibromyalgia think? How do you feel about it? I’d really like to know. Feel free to comment here or email me, please?

The one consistent thing about RA and it’s co-morbidities is that none of them are ever consistent. I feel like I’m caught in a lifelong, slow-motion whirlwind.