KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Imagine life bruised. As if you had bumped into things with every other inch of your skin, the bruises aching on their own, and flaming to life with every touch on your skin. Beyond that, you ache, deep within the muscles, as though you'd moved furniture all day long, lifted couches and mattresses. It is as though you are coming down with the flu. Your head is stuffy and aches at bright lights and loud sounds...and suddenly everything is brighter and louder than normal. You have no energy, and have to drag yourself through your day by force of will. Food doesn't even sit right, and embarassingly your gut is affected. You fall into bed early that night, unable to concentrate on your reading or even on the plot of the stupid comedy show on TV, let alone on anything work-related. It's as though you're half asleep, or you misplaced your brain. Sleep surely will help, so you go to bed. But your sleep is fragmented and broken. At every small noise...the house settling, a car passing, the cat leaping softly up to curl at your feet and sleep...you startle awake as though the phone had gone off in your ear. By morning you are even worse, moving as though you had severe arthritis. And you look totally normal.
That is fibromyalgia as I experience it. I also suffer from chronic pain due to an auto accident, and the fibromyalgia amplifies that pain when it spikes in a sadistic sort of cooperation. But fibromyalgia rarely shows up on its own. No one is sure why yet, but sufferers often also suffer from migraines, thyroid disorders, various peripheral vascular disorders, peripheral neuropathies, genitourinary symptoms such as cystitis and dysmenorrhea, and skin disorders such as scleroderma. Often there is anxiety and depression, as well as cognitive changes that are colloquially termed "fibro fog". It also seems to cluster with rheumatoid arthritis, chronic fatigue syndrome, and lupus. It flares when the sufferer is under stress, when the weather changes, when hormones shift, when one works too hard, or if one doesn't move at all. Fibromyalgia on its own is not a killer, but as you saw in the opening paragraph, it can seriously reduce your quality of life.
Some people with fibromyalgia "got it" after a physically traumatic event such as a car accident. Others follow the classic CFS presentation in which they never got over the flu. My own case developed after a pregnancy during which I suffered from hyperemesis gravidarum and lost forty pounds. I know that I caught that fall's flu virus while in the early stages of pregnancy. Obviously, while pregnant I felt pretty bad most of the time. But that child was given up for adoption, so I should have bounced back pretty quickly, able to sleep lots and eat well in peace. But I didn't.
It's a great relief to get a diagnosis. But from there, you want to know what it is that is wrong with you and producing these symptoms, and what can be done to fix it. For most of the time that fibromyalgia has been around, the answer has been "we don't know, maybe it's all in your head" and "we don't know, let's try this." Some physicians still consider it to be a mental disorder, to be treated with therapy, not medication, especially not opiates. Many ER staff consider the diagnosis of fibromyalgia in a patient to mark someone who is seeking drugs. This is very discouraging when one is a patient. One of the problems is that the symptoms are so diffuse, and you don't have anything wrong...you complain of tiredness, achiness, and lots of odd symptoms that sometimes come and go. As I mentioned above, a lot of people don't believe in fibromyalgia, and many of them are in the medical establishment. But there has been research coming in that show there IS something wrong in those of us who have this disease. We have abnormal hormones in our cerebrospinal fluid. Our brain chemical levels seem to be off. There's abnormal activity at multiple sites in the brain. Our brains don't sleep like everyone else's. We don't respond to adrenal hormone challenges the way everyone else does. We seem to have multiple hormone levels out of balance in our bodies, autonomic nervous system oddities, and most interesting of all it seems to show a polygenetic inheritance pattern. In my own family my grandmother had it (along with migraines), my aunts and mother all have migraines, thyroid problems, and depression, and I have fibromyalgia, migraines (chiefly vestibular), am hypothyroid, have Raynaud's phenomenon and IBS, and have food sensitivities and some autonomic nervous system issues. I would be utterly unsurprised if my eldest son turns out to have fibromyalgia. He has food sensitivities and has suffered a lot from "growing pains", which seems to be a fibromyalgia precursor. I only hope that when he gets his diagnosis science has finally figured out the cause of it, and that he can access treatment.
Some days I fake normal very well for about half the day. Give me a three hour rest in the middle, and if I had a quiet day beforehand, I can go for another four or six hours, especially if I'm not being particularly physically active. This leads to "You went grocery shopping yesterday, to a party last night where you danced for an hour and a half, but you can't mow the yard today?!" sorts of conversations. Over time my husband and I have gotten something of a feel for my abilities and energy. He believes me when I say I hurt, when I need a rest, or can't do something after all. My mother-in-law and my family of origin, however, believe that I'm just lazy.
The fix for me has been mostly pharmaceutical. As active as I prefer to be, I've tried all the non-pharmaceutical free things. Changing my diet to eliminate as many processed chemicals as possible has helped both the muscle pain and the IBS. I spend a lot of time in a hot bath when I am having a high pain day, and try to make sure I go to bed on time and soon enough to get plenty of sleep. Yoga works very well as a non-impact method to stretch and tone, and I enjoy doing it. But I need Ambien to sleep, Tramadol to manage pain, Synthroid for the hypothyroidism, Adderall for the ADD and cognitive changes, and sometimes I wind up taking Valium for a situation in which my PTSD is in charge of my head, and when I have muscle cramps that won't stretch out I take Skelaxin. Skelaxin also reduces the dysmenorrhea down to where I can just have a slightly off day instead of vomiting in pain.
But a whole host of medications get tried for fibromyalgia. Pain may well be sufficiently controlled with OTC meds, in company with an SSRI like Prozac or an SNRI like Effexor. Some antidepressants like Elavil are sufficiently sedating to be taken at bedtime for help with sleeping. Some people find great relief with Flexeril. (I wish I did, it's cheap.) Lyrica is widely advertised, and is a miracle drug for some people. Some people respond to Mirapex. Just as in treating depression, a lot of the process is trial and error, and it's very hard when you hurt so much to keep chasing the Pill That Works For Me With Endurable Side Effects.
One thing that one must do is to exercise. Deconditioning happens because you hurt too much to move, and then you hurt because you aren't moving. Again, what is tolerable exercise depends on the person. I love yoga, and if my foot wasn't bad (which is an entirely separate chronic pain issue) I would be able to do walking as long as I didn't push the pace too much. Swimming is also very good for fibro, though I have multiple reasons that I don't do it, but it is good. The trick is to stop when you start to feel it, because for fibro patients there is no "work through the pain". That will put you in bed in agony for the next two days if you try. Still, reconditioning IS possible, we just have to sort of sneak up on it slowly.
I mentioned those conditions that tend to show up with fibro. Obviously, treating them so that they are out of the way will lessen your overall pain and misery. I mostly have my IBS in detente with me, though every now and then hormones or stress will cause an episode. I do usually cook my own food from scratch to eliminate things that set it off. The Skelaxin is more for managing the dysmenorrhea than the calf and hamstring cramps these days, and while a large dose of my pain meds plus the Skelaxin does leave me woozy, it's better than the cramping and wears me out far less. I'm careful about my exposure to cold and to heat, which means at the extremes of the year I don't go out much. And I pace myself. I don't plan to do anything much the day after I get back from a con, and don't plan much for the few days before, so I'm in my best shape when I want to be. I keep a water glass next to the computer and sip constantly for the dry mouth, put oil in my bath water for the dry skin.
But fibromyalgia is different in its effects on everyone, just like many chronic diseases. So please, feel free to share your experience of fibro or other chronic diseases, or ask questions, or just say hi in the comments.