Living With Pain

All right. So... late in 2005 when my youngest was still an infant, I began suffering from what was diagnosed late in 2006 as two conditions: Hyper-Mobile Joint syndrome and Fibromyalgia, respectively. I can't help but agree with the first, but the second is such a mystery (even to those who suffer) that I can't avoid questioning the diagnosis.

What IS Fibromyalgia, you might ask? In simple terms, it's aches and pains that have no apparent cause. Sound suspiciously like, "It's all in your head?" If it does, you're not alone. That's what it sounds like to me.

There is no "cure" for Fibromyalgia, since they haven't even got a clue what causes the pain. Simple pain meds barely put a dent in it (and taking pain meds for a chronic condition is really a no-no). Of course, that doesn't really frighten me, as there's no cure for hyper-mobile joints and eventually if I'm not careful (and no, I'm not careful) I will probably suffer from degenerative arthritis. But treatment for Fibro is "empirical"-- meaning, everything is a shot in the dark and your guess is as good as mine whether it works. Researchers are much heartened by anti-depressant therapy (I am not-- not only can I not take anti-depressants, but only about 40% respond to this treatment. A good shot of Valium might do as well).

But for a person who has been "diagnosed" and questions the verdict, what information is there to allay their doubts and allow them to creep from "denial" to "acceptance"? I've Googled and Goggled and Googled... there don't seem to be many testimonials out there. Each time I find a description of Fibromyalgia, it's clinical, either written by a healthcare practitioner or transcribed by one. Most "self-help" or "actualization" blogs deal with what a person has done that works or doesn't work for them, and descriptions are vague, amorphous and generally tantamount to, "I hurt so bad I wanted to cry." Fine. But how did it hurt? What part of you hurt? Was it all day or just when you did something or other? Was it a burning pain? A shooting pain? A dull ache that just snowballed until you couldn't take it anymore...? We know Fibromyalgia is, literally, pain. But what does that pain feel like???

So I have no way of knowing if I truly have Fibromyalgia (other than, of course, I experience pain that the doctors cannot identify a source for). My "diagnosis" consisted of a doctor pressing into certain parts ("pressure points") and taking note that it was uncomfortable. Not particularly painful, mind you: just a shy bit on the "ugh" side of "heh" for all but two. Since there are 8 required, I think, to diagnose Fibromyalgia, I'm not sure it qualifies. STILL...

Whether or not I actually have Fibromyalgia, I've been diagnosed with Fibromyalgia, so maybe, just maybe, my own testimonial might be helpful for others in varying states of denial. Therefore, maybe, just maybe, there's a good reason to write it all down...

Prestage: neck pain, lower back pain, eczema in the ears (for which a topical prednisone was prescribed). Xrays showed nothing but a small amount of scoliosis and "something" on the film that my doctor asked if I had had any surgeries that they might have left something inside (!) but which the xray technician decided was "nothing." (Nothing???) Night-sweats (which, along with the back pain, started long before the prednisone). Directly preceding all this, I was pregnant and I also started using a memory-foam pillow. Then, when the back pain worsened, we bought a sleep number bed (at which point, the night-sweats began). A link???

Stage One:

The first thing I noticed, if I remember correctly, was pain in my heels. I would wake up in the night with burning, throbbing pain in my Achilles running from back of my ankles all the way down to the flat of my heel. Most of my pain occurred during the night: the weight of my blanket or the weight of my body would inflame it after about two or three hours of inactivity. I was told to take at least 600 milligrams of Ibuprofen twice daily to bring down inflammation. This was the first of the medications I was given.

They say that stress can trigger Fibromyalgia symptoms. At the time this began, I was 36 years old with a new baby (adopted at age seven months). The baby had feeding issues (bulimia and anorexia-- and obviously not the "weight control" kind) and doctors were telling me that he was perfectly healthy, suffering no ill-effects and not failing to thrive. In the meantime, I was constantly covered in vomit and feeding-time (which should have been the epitome of bonding for the newly adoptive mom) had turned into a nightmare of insecurities, frustration and sometimes downright anger. For obvious reasons, my son himself developed anger and frustration issues through this experience. I began to wonder if he was making himself vomit on purpose. Awful, I know, but we were lost, alone and completely unsupported by the people who should have been helping us to overcome this issue. He would eat everything in sight for two weeks and pack on the ounces (once, nearly a pound!) then slowly work down to refusing any food (bottle or jars) until he'd vomit everything I managed to wheedle into him for an entire week. His weight would plummet, his face was thin and haggard, his hair was thin and lank, his skin lacked luster, his teeth came in mottled. Since he wasn't dehydrated and he wasn't "losing weight" (he would gain it all back quickly plus an ounce or two for good measure) the doctors constantly assured me that he was fine. Yet throughout it all, his intelligent eyes stared out at me accusingly, angrily, "Why are you doing this to me?" "Why aren't you helping???" His anger was contagious.

Yes, I was stressed.

((In the months leading up to this most wondrous time in a mother's life, I should also make note that we moved from a temperate climate into one where the snow piled up two-feet deep in the first week we took up residence there, and I suffered a miscarriage the following month. That was five months before our son came to us and about two months before my pain began, so it might have little or no affect on my tale. It did play a factor in my increase of pain from hyper-mobile joints, as tendons and ligaments loosen during pregnancy so perhaps, "Stage One" should actually have been the lower back pain I acquired from a combination of scoliosis and loosening ligaments.))

Stage Two:

The Clumsies. I have no idea whether "The Clumsies" has anything at all to do with my supposed Fibromyalgia. I make note of it for the same reason I make note that I started taking Ibuprofen regularly during stage one: because there might be a connection. Perhaps the connecting factor was lack of sleep: not only had heel pain woken me repeatedly during stage one, but so had an angry, hungry baby who could not sleep through the night (for obvious reasons), was ravenous when fed but just as likely to vomit it all up or refuse the bottle, scratch and pull my hair while slowly starving...

Right, so The Clumsies started now, pretty much. During the month of October (less than two months after my son's arrival) I manged to fall down the stairs-- every mother's nightmare: I was holding my baby son at the time, but twisted myself into a pretzel to protect him, holding onto him for dear life and managing to save him though not myself.

All-in-all, it wasn't a bad spill. I had a small bruise on the small of my back and wrenched my shoulder when I grabbed for the railing to halt 135 pound of me from plummeting head-first to the base of the stairs and landing on top of my fragile son. I came to a halt-- not at the base of the stairs which might have been the outcome had I not been desperate to protect the baby-- but halfway down, on my back, with one arm gripping the railing and the other hanging onto the baby. Most of my weight was taken by my lower-back on the edge of the stair.

Later that same month, I was outside enjoying the sunshine (okay the shade) and typing away on my computer when the monitor told me the baby was awake. I closed up shop and started into the house, caught my big toe in a slightly-raised portion of the patio (one I'd stepped over a million times) and fell flat on my face. I mean, seriously flat on my face. Since I was holding the computer under my right arm, and of course my first thought was not to drop it, I didn't stretch out both arms to save myself. Did no good: when my right elbow struck the pavement, the computer went flying. It still bears the scars of our misadventure... and so do my jeans. I scraped my chin, my elbow and my knee (but I have strong bones, let me tell you... still nothing broken-- not even a rattle in my brain pan). Talk about hurt-hurt-hurt, though...

By November, the pain in my shoulder from the fall down the stairs was no better. And it had moved to the second shoulder. Small tasks like clasping a seat belt or slipping my arm into a jacket were excruciating. Still, there was nothing wrong with me. Just aches and pains that wouldn't go away.

Then the pain followed me to bed...

Stage Three:

By Mother's Day of 2006:

My lower back pain seemed to be spreading to my hips. I couldn't get comfortable at night (despite a Sleep Number bed and a gazillion attempted settings). On my side, I felt as if my hip were being thrust up into the air like Mount Everest, twisting my lower spin unnaturally. On my back, the Achilles pain would start again (from pressure of my heels against the mattress), burning, burning, burning, from the bottom of my heels up to my calves.

In Stage Three, the slightest pressure of my body on the mattress caused... how to describe it??? Dante's Inferno, eternal damnation, torture in the extreme, flayed alive, a monster burnt by torch-wielding villagers...?

I thought I was going to die...

During Stage Three, here's a clinical list of my pain:

Lower back and neck pain: Most likely from a combination of pregnancy loosening my ligaments (which are already loose from HMJS) and scoliosis.

Deep hip pain: It felt as if my legs were being pulled from their sockets

Muscular hip pain: muscles of the lower-back and surrounding the hips were tender and achy, as they might be after a gentle, five mile walk when not accustomed to exercise.

Deep shoulder pain: It felt as if my shoulders were being pulled from their sockets.

Facial Pain: My jaw felt as if it were being pulled from its socket. My ear canals throbbed, my temples throbbed. The sensation was similar to a burning fever, and yes, the skin felt hot to my touch and always felt hot "inwardly" (in other words, even if I wasn't feverish, I felt hot to myself, though maybe not to the touch). Ear pain began in the "lymph node" below the earlobe, and traveled down to my shoulder, meeting up with the shoulder pain. Head, neck, shoulder pain all seemed to be one.

The thing that should be noted here: all pain was one-sided, though it occurred in both sides. How is that possible? you might ask. Because whichever side I slept on hurt. Yes, whatever part of me touched the bed felt like poisonous gangrene had set in during the night. I am the Princess and my entire bed was The Pea. My pillow-- even the light, fluffy, thin down pillow I bought in reaction to the facial pain from a "firm" fiberfill pillow-- weighed against my ears and jaws as if I was sleeping on a log. If I slept on my back, hoping to spare my face, shoulders and hips, the weight of my own feet and chest would start the pain in my heels and shoulder blades. If I bent my knees to compensate, the weight of the blanket was unbearable.

During Stage Three, I slept only about two hours at a time. During Stage Two, I would awaken, but change positions and fall back asleep. During Stage three, there was no position, since I had already woken and changed positions to relieve pain on one side during the night and by that time, both sides hurt. Like most normal people, when I wake fully, I have to pee. Immediately and unquestionably. If I try to put it off, I only become more awake. So... waking fully from pain, being aggravated by hydraulic pressure, actually having to get out of bed to relieve some portion of discomfort so I could delude myself into another hour of "rest."

Basically, though Stage Three is system-wide pain, it's also characterized by sleep-deprivation. I would stay up as late as I could-- until I felt nauseous and dizzy from fatigue-- then drop into a hopeless sleep. I imagine I "slept" about six hours nightly (defining "sleep" as the time I drop off to the time I get out of bed), but actual sleep-time was nearer to three or four hours a night. Most mornings I was driven from bed not from a sense of duty but because one more hour of sleep would be excruciating rather than restful. Being in bed was torture.

Stage Four:

Begging for help. The doctor tested me for Lupis, Lyme and ummm... MS? My Rh factor was normal (rheumatoid arthritis). Then she sent me to a rheumatism specialist. He poked me here and there and told me I have Fibromyalgia.

Of course I'm depressed, you ninnies!!! One sign of Fibromyalgia is depression. Good GOD people. Of course we're depressed. Wouldn't you be, if you'd just spent the last year in pure hell, sleep-deprived, frightened, wondering if you were going to die??? Unable to move from the pain but lack of movement makes it worse? Having to choose between the aches and pains caused by everyday activities and the burning torture of trying to rest? Exhaustion, fatigue AND pain. You know... there are tortures used by governments that are less torturous and break the spirit and will-to-live of their victims. Please... Do NOT inform me that a symptom of Fibromyalgia is depression. I'm crying because every signal my body sends me is, "Help me, help me! We're going to die!!! Do something!!!" Sleep deprivation is actually the least of my worries: it contributes to the problem, sure... but if I'm waking during the night, it means I will actually wake up in the morning. I'm not dead. If it hurts this badly, I'm still alive, I made it through one more night, I'm going to live...

Through all the pain, through all the frustration and fear and hopelessness... I clung to that one point: I woke up!!!

So... the "joint doctor" suggested anti-depressants (because, as I said, treatment is empirical and of course they just throw out anti-depressants automatically for those who are sleepless or crying). Anti-depressants make me psycho. I mean, "psychotic." Not even an option in my wildest dreams, even if I WASN'T suffering from clinical depression (anti-depressants are for clinical depression. Depression from trauma-- psychological or physical-- is called SITUATIONAL depression and normally resolves when the trauma is dealt with. In my opinion, prescribing anti-depressants for anything but clinical depression is negligent). The specialist shrugged, said, "Have it your way," and sent me back to my General Practitioner.

My MD sent me to occupational therapy (for which our insurance decided it applied to our deductible and we not only had to pay 100% but the deductible renewed after one month, since I was diagnosed in December and our benefits rolled over in January).

The therapist identified scoliosis as the source for my lower back pain, along with HMJS worsening from pregnancy (I was shocked-- my miscarriage had been in February of '05, this was December '06 and the loosening ligaments had lasted that long???) I began to wonder if the shoulder and hip pain (which felt as if my joints were being pulled from their sockets when I rested on them) was also a symptom of this syndrome. It remains a mystery. Exercises did help to relieve some of my back pain: at least while I was doing them, it felt so good... though the pain persisted-- kind of like rubbing an aching muscle: it still hurts afterward, but the massage feels great.

Stage Five:

Spontaneous Remission. Okay, this is something else indicative of Fibromyalgia: eventually, it gets better. They don't know why it gets better any more than they know what causes it. It get better for no reason, then something may trigger it again and start the cycle over again. It might be never-ending, and it might be only once.

By May of the following spring, I was feeling marginally better: mainly because the sun was out though it was still chilly and I could sit in a protected corner and soak it up. All right, so I'm risking skin-cancer. But it just felt so GOOD. Feeling chipper by noon goes a long way to alleviate feelings of doom and gloom and hopelessness in the morning. Sunshine helps, as does the fact that I didn't need to bundle up in twenty layers to go outside and walk about a bit. My ears and head felt significantly better, once the warmth of the sun hit my face. Maybe it was plain old vitamin D deficiency since I can't drink milk. Maybe chattering teeth affects the brain-pan. Whatever the case, my outlook was significantly changed even if the pain was only marginally better.

Then the allergies hit.

I have never really had more than mild seasonal allergies. The ear eczema (I now know) is caused by an allergy to something. I've been diagnosed off and on with irritable bowel syndrome (even though my main symptom was diarrhea and not constipation) along with a whole host of everything else that might affect my UT or digestion. What I hadn't done (at least, not since I was eight) was visit an allergist.

By July, I was down with bronchitis. If you've never experienced night-time pain or Fibromyalgia pain, you can't understand the torture. Coughing spasms wrack every part of your body, even those five inches that didn't already hurt. Weakness from infection and exhaustion from coughing half the night add to hopelessness. Lying in bed half the day because you're too sick to do anything, with a fever of 103 when you already felt feverish...

I slept in the basement (because it was cooler, more humid, and relieved my family of the stress of my coughing). I slept with an ice pack, which not only cooled me down but relieved that cyclical coughing caused by coughing too hard, overheating and unable to stop coughing. Wake up, grab the ice pack, hobble upstairs to the bathroom, blow my nose, curl back up... sleep another hour...

But the cold intensified my head and neck pain. Urgh...

A round of antibiotics later, I was feeling better than I had for a year. By the time my poor, cough-wracked ribs had recuperated, my shoulder pain was pretty much gone (whereas, I hadn't been able to slip on a jacket without gasping since fall).

So what does bronchitis and allergies have to do with Fibromyalgia?

Maybe nothing, who knows. Maybe everything. First, I discovered that I was allergic to many substances in my environment (which caused the infection, eventually) and second, I discovered I had food allergies. Some of the environmental factors were also in my food!!!

There's the possibility that the antibiotics had an effect. It's also possible that avoiding food allergies and taking a regular antihistamine had an effect. Whichever was the case, I slowly climbed up from the abyss about the time I managed my allergies and took an antibiotic. Both or neither, no clue.

Then, we moved from Cow Country to Chicken Country. Corn (the major culprit in my downward spiral) became even more of a daily companion. The downward spiral began again...

The first winter, I developed severe pain in my neck and ears again, worsened on the side I slept on, throbbing and pulsing through most of the day, worsened by the cold outside as well, spreading down my neck to my shoulders again. I ran out of Prednisone drops. The eczema worsened, too. It not only never really got better through the spring but by July... I was finally diagnosed with an ear infection.

First, I was treated with a drop, since it's hard to diagnose middle-ear-infections and most adults don't get them. I definitely had an outer ear infection (complete with fluid drainage and swelling). After about a week, I broke down and went to an urgent care facility and was told I probably also had a middle-ear infection since the ear-drum was swollen, red and puss-y. Urgh.

More antibiotics.

By the time I finished this round, nearly all the pain was gone from my head, neck and shoulders again. Coincidence? Not sure... The Pain in my ears returned about a month later and I used the drops again, felt a relief again. The eczema was better with the drops, worse again after I stopped, even with the prednisone (which at this point I was using daily as prescribed rather than a half-dose, one week out of a month as-needed).

Connection between ear infections and Fibromyalgia? Not a clue... except to say that the ears and eczema were directly related to my allergies... allergies that I was exposed to suddenly on a daily basis at the beginning of my ordeal...

Ramblings:

Here's the thing about Fibromyalgia: they really, really, know nothing about it. It's just a name. There are two schools of thought on the disorder.

First, it's said that people with Fibromyalgia have a low tolerance for pain. I would like to say this is a fallacy, perpetuated by studies on sufferers who are already at breaking point and doctors who will grasp at anything to explain the phenomenon. In December of the first year, at the height of my raging pain, made clumsy by sleep deprivation and stumbling around in the darkness twelve times a night to find the bathroom, I broke my littlest toe. Slammed it into the bathroom doorway with such force that it tears sprang to my eyes.

I hesitated for about three seconds while I caught my breath, then hobbled back to bed, slept another two hours, then rose in the morning, dressed, put on my shoes, took my daughter to preschool and my son to the doctor where he was having blood drawn (routine, lead-screening). As I had a moment to rest and sat in the waiting room, my foot began to throb. I realized my shoe seemed tight so I took it off and the sock to look. The entire side of my foot was varying shades of black, blue and red, and swelling more by the moment as I waited. I called my doctor, got an appointment to come in right after I got out from the lab. She was doubtful that I'd managed to break a toe, sleep through the pain, then run errands for an additional two hours without noticing until the swelling made my shoe tighten and press on the toe. Four hours it took me, before I began to wonder what was wrong with my foot enough to actually take my sock off and look.

It was broken, of course. You can't get those beautiful shades of purple (and swelling) without at least a serious sprain. I ask you, does that sound like a person with a low threshold for pain??? No.

The second school of thought is that the pain itself is phantom. The brain sends out signals to the body to hurt, without any injury or over-extension. This is possible and plausible. After all, the pain-signals in the human body are about the most retarded thing God ever thought up. Quite possibly he's laughing about it, as we speak.

Case in point: pain is our body's early warning system. We receive physical trauma-- say, pound our thumb with a hammer. The nerves respond by shrieking at the brain, "We're in trouble, here! Danger, danger!!!" The brain, in turn, hears that shriek and shrieks back at the hands, "Whatever you're doing, stop it, RIGHT NOW!!!" The hand drops the hammer and we stop smashing ourselves with it.

It doesn't stop, though. There is no "antidote" to the chemical scream your nerves send up to your brain. Once you stop smashing yourself with the hammer, the pain doesn't stop. Oh... eventually, the chemical shrieks become fewer as your nerves decide that there's no further danger... but in cases of more serious injury, it goes on and on and on. What should be a warning system turns into corporal punishment. "You hurt me, therefore, I'm going to get even."

But... even as a warning signal, pain falls far short of the mark. The same signals that are sent to Fibromyalgia sufferers that convince us we must surely be dying... are lacking in many cases of terminal disease. A person can be suffering from advanced cancer and never know it. As useful bodily functions go, pain receptors are pretty much asleep at the wheel. We can be given a shot of pain for no reason, and not be given a shot of pain to warn us we really are dying. How useful is that???

But for Fibromyalgia sufferers, they believe that the brain (or is it the nerves?) produce an over-abundance of the "chemical shout" that triggers pain. The brain gets confused, senses threat where there is none and just goes willy-nilly, "StopstopSTOP!!!" (When in question or in doubt, run in circles, scream and shout). It has no idea which nerves are sending out the chemical scream, so it responds by panicking and warning all systems of malfunction. If it hits enough places, it figures sooner or later it'll get the right one, we'll stop hitting our thumb/toe/shoulder/hip/head with the hammer and it can get some peace again.

Can trauma trigger Fibromyalgia? The consensus is, "yes," and I agree. While my pain didn't begin with trauma, my overabundance of pain seemed to be triggered shortly after my fall down the stairs. Perhaps it had nothing to do with it, but then again, maybe my body had had enough and when a serious jolt of pain hit my brain, my brain just didn't know when to stop. Between the pain of pregnancy, of miscarriage, of a D&C (where I was further weakened by anesthesia), the stress of a move from a mild climate to below-zero, inactivity (I've always hibernated in the winter), sleepless nights with a sick child and worry that he wasn't getting better... when I fell down the stairs, my body said, "Dammitall, just STOP!!!"

Perhaps if I'd listened (or if I had had the luxury of listening) things would not have gotten out of hand. Perhaps if I'd meditated or taken yoga, or if I'd simply taken a nap in the afternoon rather than catching up with the mounds of laundry, perhaps if I'd taken care not to fall again, if I'd reacted to nighttime pain by getting more sleep rather than keeping myself awake... maybe my brain wouldn't have punished me. Maybe.

But the fact of the matter is, I didn't listen. I kept plugging away, getting worse and worse, getting more and more depressed as I got less and less sleep and fewer and fewer answers.

Here is my answer. No, it isn't a cure for Fibromyalgia. There is no cure: once you have it, you're likely to trigger again from anything at all. But there is an inoculation for the disease. It's called, "Take a chill pill."

When your body sends out that chemical scream, no matter how difficult it is, listen to it. If your back hurts, don't just take a pill or ignore it. Stretch. Change positions. Study your pain, figure out what's causing it (even if it's as simple as the old joke, "Hey doc, it hurts when I do this." Doc: "So, don't do that.") Rest when you feel tired. Walk around when you feel stiff. Sit outside and listen to the wind and the birds and the lawnmowers on the next block even if your own lawn is a bit tall: it'll keep for another day. You don't have to keep plugging away. Like with carpal tunnel syndrome: if your job hurts you, switch jobs. There is always a reason for pain, even if sometimes it goes haywire. Find out what's causing your pain and if you can't eliminate the source, as least find ways to relieve the reaction from time-to-time.

For current sufferers, this is probably good advice that might help to avoid future triggers. For those who do not yet suffer from it, it's good advice to help avoid ever knowing the sort of pain Fibromyalgia causes.

As for myself... What hurts the most, I think, is that the things I love to do trigger my chemical scream. I can still do them: I can still pound the hammer or push the drill or climb the ladders... but I pay for it. I pay dearly and sometimes daily, right now, and that hurts. I sit some days, following my own advice and resting rather than doing, staring at the 3/4 built playhouse in my backyard, thinking about finishing the interior and I want to cry. How can I tell my brain to STFU long enough to do it? How will I manage to stoop and bend and crane my neck every which way, pushing and pulling and pounding and drilling...??? It seems an insurmountable task, yet I will do it. I promised my children I would and I will.

In the meantime, I sit here instead, wondering if it will ever stop. In a few minutes, I will get up and wander around the yard, ever staring up at my monument to Esher-- the twisting, winding stairs, balconies and ladders that wrap aimlessly but artfully around the outside of the too-small, top-heavy playhouse: planning, thinking about what needs to be done (relieving the stiffness of sitting for too long). But today, I cringe even at the thought of lifting the chop-saw out of the shed and stooping to plug it in. I could hammer, today, but I have nothing to hammer if I haven't cut the pieces.

Maybe tomorrow, I'll begin again. I have another five chapters of a book I began a year ago to write as well, but today is the first time I can sit at a computer in two weeks and it occurred to me that there were more important things to write than epic fantasy.

There's also tragedy.

((Note: my timeline might be off, and some of my self-inflicted injuries may be out of sequence. However, the time-table of suffering for almost precisely one year (starting in the summer of '05 and diagnosis in the winter of '06) is accurate. If I think about it long enough through the haze, then actual time lapsed from onset to complete remission was about two years). It has now been over three years since I've had complete, system-wide pain (though the here-and-theres are bad enough, thanks). Most notably, I'd like to point out that it's starting again...))