I have fibromyalgia and several related illnesses/syndromes; namely hypothyroidism, Raynaud's phenomenon, migraine with aura, irritable bowel syndrome, and generalized anxiety issues, along with ADHD. I also have arthritis related to trauma to my feet and ankles. As a pile, this is a pretty disabling set of circumstances and left me unable to do much at all. Migraines came and went, often when I was enjoying some delicious food. I never knew when I could leave the house, because my gut would swing from constipated (and painful!) to diarrhea at random. I ached all over as though I'd moved furniture the day before and had great big invisible bruises all over me. I couldn't quite think straight and my muscles were so tight I could hardly bend over to tie my shoes. My hands and feet and ears ached and burned in the cold, and I just got cold so easily! I felt massively heavy and totally useless, and hated it.
When I was diagnosed with fibromyalgia, I felt better for having a name for this problem, but I still didn't know how to handle it, and apart from throwing some antidepressants at me, neither did my physician. So I started writing things down.
Follow me to see what I wrote, and how it turned out.
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You see, people with fibromyalgia get told all sorts of things will solve it. It's food allergies! It's enviromental! It's stress! It's this, or that, or never mind what I said, it's the other!
Well, said I, I can't figure out anything without data. And the cognitive fog makes it really hard to remember what I did yesterday, let alone any details of highs and lows of pain or stiffness. The answer seemed pretty clear to me. I began to write it all down.
I graded my pain on a 1-10 scale and wrote a brief descriptor of what it was like and where. I did this four times a day: Waking up, noon, 5 pm, bedtime.
I graded stiffness and muscle tightness/spasm from 1-10 and wrote down where.
I answered "How did you sleep last night?"
I noted the weather and its general movements during the day.
I noted what I ate and drank, kept track of how much water I drank.
And I even noted down the products of my digestive tract, grading the solids on the Bristol stool scale. Also noting any cramping or flatulence.
Needless to say, my menstrual period got tracked.
Here is one diary sheet filled out as it might be on a normal day. I kept mine in a binder, and once a month charted the symptoms. One day is one day, after all. Thirty days is data, and potential patterns. When several months go by, I can observe menstrual interaction with my symptoms, and definitive environmental ones.
And over time I saw a pattern. I saw several.
Migraines were connected with stress, with fruit, and with sweets. Commercial baked goods were worse than homemade, often making me instantly nauseous. I had headaches when storm fronts came through too, and the more violent the storm, the more likely. Splenda doesn't cause me any problems, and with time I've figured out that a thin smear of jelly on my toast is okay, and if I don't eat the icing and I had a good meal beforehand, I can probably eat a few bites of birthday cake to be polite. Ice cream is usually okay in small rational amounts. (If I eat enough to get a headache, what the hell am I doing eating an entire pint at a sitting?)
Fibromyalgia hurts worse when I'm stressed, and the more I'm immobile. It seems to be aggravated by preservatives, food additives and by nightshade family plants. Not in a massive way, but in a cumulative fashion; eat the wrong things for a couple days, and wake up the third REALLY stiff and sore. I gave up soda as a daily drink and drink tea and water instead. I don't like coffee. I hurt more when I push myself and take longer than most people to recover from physical activity.
The IBS does not like beans. It does not like broccoli, cauliflower, cabbage, chinese cabbage, or spinach. Too much iceberg lettuce will do it too. I can have a side salad about every third day, but no dinner salads. I need to keep my fiber intake pretty steady. I can eat all whole grain, but only if I can commit to that EVERY DAY. If I go out to eat and have a sandwich on a white bun, there would be trouble. So I eat only so much whole wheat so that I can go out and enjoy the occasional gyro or burger. I also keep the fat level in my diet constant because indulgence in a grease bomb pizza would create downstream disturbances. I have to eat the good stuff, which is fine with me overall. I also have to go to the bathroom when my body signals that defecation is imminent, or I'll get backed up, and that is NOT comfortable. Thanks to previous trauma associated with nine-pound babies, I like to keep things pretty soft and smooth, and that way I don't feel battered and sore when I'm done with the daily constitutional. I've also largely given up sodas; less gas in, less gas out. I drink them on occasion as canned caffeine is useful for travel, but I don't have them at home and it's better that way.
The ADHD responds best to meds, but in the absence of those, it helps to lead an orderly life. I make menus for our food a month at a time. I have days to clean and days to do laundry. I have a bedtime and a time to get up. I lay out tomorrow's clothes before I go to bed. I keep a clean uncluttered house. This helps a lot.
Having an orderly life like this means that I have less stress, which helps with the anxiety attacks, the fibromyalgia and the IBS. Planning meals also lets me make sure that I'm eating the right things for my body. I can't make the weather any different, of course, but if I have things in order, nothing's going to entirely fall apart if I have to do it this afternoon instead of this morning due to a weather-related migraine. So the stress is lessened, and I just go back to bed in a dark room, and in a few hours I can get on with my life.
I also cut things out of my life that were more stressful than beneficial and do things that make me feel better. This includes having pretty things around me (I will happily dust pretty antique furniture, if it's MINE), and doing things that I enjoy. The kink and the polyamory only make me miserable when I pretend that's not how I'm wired. I'm much happier now that I accepted who I am. I have three wonderful people in my life who love me as I am and like the way I'm improving and growing.
I can't walk for exercise, thanks to the foot issues, and when I started this I had NO stamina anyway. So I started doing Iyengar yoga. And lo and behold, I was less stiff and sore, I was more flexible, I was stronger, and my body felt big and strong and capable and not so much big and awkward and painful. That helps you feel better, too!
There's really no cure for Raynaud's, but I've learned what situations can cause problems. I have to be careful to dry my hands very thoroughly when I wash them and only to use warm water to do so. I wear socks all the time, except in the summer when it is over 80. In the cooler months I wear wool socks. Sometimes I wear a pair of wool socks and a pair of thin cotton ones underneath. I keep gloves in my purse and in my pantry so that I can reach into a freezer. And when I go outside in the winter, yes, I do look like I'm preparing to trek into the arctic. I had to get over that. It's what I have to do, and it's a lot better than having to rewarm myself when I get home so I can sleep that night. Oh, and I wear socks to bed and use flannel sheets. Naked feet on chilly cotton in a cool room is enough to set off an attack.
I can't get off the road I'm on. But at least now I'm largely in the driver's seat, and I can live with that.
Alexandra Lynch is a 43 year old woman living in Indiana. She lives and practices slow food, polyamory, paganism, and gracious living on a minimal income. In her spare time she writes and researches anything that takes her fancy, and is usually to be found with a cat in her lap.
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