Living with fibro

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Publication Date: 
Mon, 2013-10-07

By Adrienne Kitchin

Having fibromyalgia hurts. All over. All the time. But it is not only a condition of chronic pain. It is also one of chronic fatigue. Fibromyalgia brings with it cognitive difficulties that often leave sufferers thinking that they may have Alzheimer’s disease. These symptoms include difficulty with word finding, which I have experienced; as a writer, this is most unnerving as I have always been one who has had that sixth sense for vocabulary and spelling of even the most arcane words.

I have had fibromyalgia for 15 years and run the gamut of emotional responses from denial to depression. Every morning I wake up feeling like I have been hit by a truck. I sometimes joke with my husband that when I get up I look like someone at least twice my age who indeed has been hit by a truck because I hobble to the bathroom, holding the wall for support. I hurt from my feet to my head and I am so stiff that if I drop something I try to pick it up with my foot because I can’t bend until after I’ve had a scalding hot shower.  

I’m usually much better after that hot shower, but I still hurt. I have to get dressed, of course, and that can take a while as my arms are often achy, like having the flu, and a simple task like putting on a shirt can be painful, not to mention holding a blow dryer above my head to dry my hair. I find I have to wear loose clothing or comfortable stretchy clothing that moves and doesn’t hurt me just by being too close or too tight or too something against my skin. Vacuuming is particularly exacerbating. And folding laundry could lay me out for days, depending on where I am with my pain and exhaustion levels at the time I attempt the task.

Most doctors don’t know how to help patients with fibromyalgia and prescribe anti-depressants to combat sleep issues and narcotics to help with the pain. But these things don’t help; they only mask symptoms and people can become addicted to these medications. A rheumatologist once said that I do well for a person who has fibromyalgia because I go to the gym to manage the pain by doing gentle exercise. But this can also increase the pain and exhaustion, so I am constantly in a balancing act of what I can or can’t do. If I am having a day where pain is less severe, I have to be very cautious about doing too much, as that can also cause a flare-up that might last for days.

Recently I was refused coverage under my husband’s insurance plan because the company does not insure people with fibromyalgia. That was a particularly hard pill to swallow as I am pregnant and going to be off work for maternity leave and will be without health insurance.

People with fibromyalgia are often in too much pain to work. I have found a compromise working as a contract teacher, which allows for more freedom to do some pain management, such as going to the gym earlier in the day when my energy levels are better.  But all I do, outside of pain management, is work. I have no social life. I rarely see family. I am always working, trying to manage the pain, or in serious pain and so have to turn down many invitations. In fact, invitations rarely come my way anymore as I usually have to politely decline.

Having fibromyalgia is synonymous with having a hidden disability. Most people still don’t know I struggle with this and even if they do, they don’t know what it means. I end up feeling as though I am trying to convince the person that I actually do have a legitimate health issue, so I often don’t say anything at all.

I also have ulcerative colitis. Digestive issues are common to people with fibromyalgia, and so I must watch what I eat as certain foods or beverages can cause achy flare-ups that include more joint and muscle pain and aggravate the internal inflammation as well. They aren’t worth the bit of stimulation they offer.

Having fibromyalgia hurts from head to toe, inside and out. It is also so exhausting from consistent non-restorative sleep. Perhaps it makes sense that cognitive difficulties follow. The digestive issues certainly complicate matters and in the end, I spend a lot of time just managing the symptoms. Some days I need to take a step back and rest. Other days, it is a slow burn where I try to pace myself and not be overwhelmed by the fact that this is a condition that will most likely be with me for life.


See also Understanding fibromyalgia by Margaret Parlor

Adrienne Kitchin is a freelance writer based in Toronto, Ontario. Amidst managing all the particulars of having fibromyalgia, she teaches Humanities, Anthropology and Academic Writing at Humber College. She also helps aspiring writers find their creative voice through leading workshops on yoga and creative writing and blogs on this topic at solunayogawrites.com.