Living with fibro.
I’m often asked to describe some aspect of fibro (fibromyalgia), my chronic pain, chronic illness, etc. It’s not easy. There are so many pieces that all interconnect. As soon as I mention one thing, something else comes up… because one always affects the other, and another and another…
I recently went through my worst flareup. I’m beginning to feel like I’m coming out ahead of it now, but there’s never any total relief. My normal state is always in pain, just a lesser degree. I actually do not recall a day without pain anymore. It’s been more than thirteen years of dealing with this, day in and day out. I try not to get into it much, but you can rest assured that if I’m talking about it, it’s worse than “normal”.
What is fibro?
Fibromyalgia is a condition that affects the soft tissue, most specifically the fascia (connective tissue that attaches/covers muscles). The latest theory is something to do with nerves over-firing and not shutting off. The sensitivity to pain being much more active than pre-fibromyalgia. There may be a neurological root to this syndrome, however it is not psychological.
Fibro is so much more than that though. There are 18 tender points throughout the body that seem to be overactive at different times. During this last flareup, that lasted a few months, every single tender point was in excruciating pain. My “normal” usual involves about 6-8.
Additionally, my muscles are always on high alert. My neck and shoulders are so tight at all times that knots form up and down my neck. It feels like that terrible neck and shoulder tension that comes during extensive highly stressful periods… only it’s 24/7. I find myself tensing muscles constantly, even in the most relaxed state. If I bring awareness to my body, I’ll notice it. And the most active pain areas are knotted up so that every visit to the massage therapist involves painful deep tissue massage in order to feel just a little relief from all the knots.
I see my massage therapist once/month. However, the benefit I feel from massage only last several days. If I could afford to, I’d have a standing weekly appointment. I also see each of a chiropractor, physiotherapist, my family physician and a pain specialist approximately monthly.
In the past I have been treated by acupuncturists, osteopaths, psychologists, social workers, natural medicine…I have even considered stem cell therapy for my joints and muscles. Cendant Stem Cell Center in Denver has some promising procedures that I have yet to try.
Medications for fibro.
I have tried so many medications I have lost count. Meds for pain, meds to help my sleep cycle, meds for nerve endings…
Amitriptyline, nortriptyline, lyrica, Cymbalta, naproxen, advil, Tylenol, tramadol, Voltaren, cesamet… the list goes on.
I recently asked my pharmacy (which has only been my pharmacy for a little over three years) to give me a print out of my history. It’s several pages long. Imagine what the other ten years looks like!
I have always been one to try to avoid meds and I hate feeling like a guinea pig. Some treatments work but I have found no matter what the initial response, there is always a plateau at some point and the benefit no longer is seen.
At one point for over a year I had avoided eating all wheat, to no avail. I use a heating pad ritualistically at bedtime. I ice my flareups when they are inflamed. I have tried dry needling, “cupping”, many recommendations of supplements…
I have started logging everything, from symptoms to meds intake, foods eaten, water consumption, heart rate, stress levels, weather, my menstrual cycle, physical activity/exercise and sleep.
I live with a brain fog, and frequent vertigo. Sometimes I attribute it to lack of sleep, sometimes to the meds, and sometimes to my pain levels. In any event, my memory is nothing like it once was, and I have inconsistencies in efficiency of thought processing.
I spent the better part of time I off recently (to rest and recover over a period of a few weeks) researching apps to log and sync most of that data. They don’t all interact, but I hope one day something will work together with them all.
Sleep is a chicken and egg kind of conundrum. I never ever get a restful sleep. My body can’t seem to get into a deep restorative sleep, ever. And yet, my pain cannot improve without some opportunity for my body to heal itself while I sleep. The pain keeps me awake, and the lack of sleep keeps the pain turned on. Chicken, egg, chicken. Egg. Chicken.
I love to be active, indoors and outdoors and I find when I have a regular routine of exercise that my health is definitely the best. But when a flareup occurs (which can be triggered by any combination of things including stress, the weather, and injury, or even just over doing it a little) I get completely derailed. And what would take a “normal” person 12 weeks to get back on track, will take me at least twice that. I need to double up the rest time and cut in half the workout intensities, and hope that something else doesn’t derail me before I get back on track.
Days like today, I feel like a complainer. A whiny, miserable, complainer. And I know there are those who look at me and think “there’s nothing wrong with you, why don’t you just suck it up?” But the fact is, as much as it gets me down, the tears just don’t flow. Living with fibro is frustrating, and often doesn’t feel like much of a life. But it’s mine and I will do so unapologetically.
Written by Bob Rosenburger