Fibromyalgia is a bit of a ‘catch all’ diagnosis. It’s often handed down when doctors don’t know (or do not have the incentive to discover) what’s causing the myriad symptoms that the patient is suffering with – and those symptoms are myriad; over 200 at the last count. Because of this complexity, finding the root cause or best treatment for each individual can be akin to searching for the proverbial needle in a haystack. Add to the mix the fact that Fibromyalgia loves company, and rarely travels without a companion illness, and it becomes clear that medicinal platitudes are rarely going to be helpful; it’s the person that has to be treated, not the illness. This is why some of the best allies are the ones who listen.
A well-meaning friend sent me a link to a talk given by a woman who claimed that hypnotherapy was the key to curing both Fibromyalgia and Chronic Fatigue Syndrome. The woman in question was clearly fishing for more clients (and a ‘miracle cure’ is easy bait for the desperate) but the moment I started watching it I felt guilty: guilty for not trying hard enough to force my body to behave like it did four years ago, guilty for not searching for the ‘trauma’ that put me in this position and really guilty for believing that my illness is in my body and not exclusively psychological. Because if you’re doing all the correct things – the yoga, the meditation, the elimination diets – and you’re still not well, then surely the failing must be in the mind? Isn’t that what doctors are always telling women?
Self-belief is something I have always had an issue with, leaving me in a position of always second guessing my own thoughts: so when I’m confronted with an idea that’s incongruent to my own knowledge, but presented in an authoritative manner, my first reaction is often to ask what I’m doing wrong. Watching this particular video essentially had the same effect. Until that is, I started to experience the full consequences of my little sojourn in the hospital.
I did feel drained when I was released after my overnight stay, but I assumed it was just due to the experience of having a truly terrible night’s sleep. Two-hourly observations plus the fact that the ward just got bizarrely loud after 3am seemed to provide the most logical explanation for why I was feeling so dreadful.
When I crashed completely on Tuesday, I thought it was inevitable; when I crashed again on Wednesday, I thought it somewhat odd. By the time I found myself needing almost twenty hours of sleep on Friday, I was starting to feel scared. Was this an unexpected relapse, a Fibromyalgia flare, or was my body just really, really missing the hockey-induced neurotransmitter boost? In order to find some answers, I decided to do what I do best and look for patterns.
A couple of mornings after my release I woke up with a serious lack of appetite. This in and of itself is not that unusual – I have endometrial deposits on my bowel, and my sigmoid colon has a tendency to sleep on the job. I assumed, rightly or wrongly, that my digestive system needed a tiny amount of cajoling and flushed my stomach with Andrews Liver Salts. Thinking I would start to feel better in a matter of hours, I carried on with my day (which essentially consisted of watching this video on a loop…). I would later discover that I’d made probably made something of a mistake…
When I properly examined what events were sending me crashing into my pillow, two things stood out. The first was that the exhaustion would strike just after I felt a migraine approaching, the second was that the migraines seemed to be triggered by the consumption of solid food. I freely admit that I possibly eat way more rice than the average person, and as I am vehemently gluten free, any pasta I eat tends to have rice involved in the mix somewhere. With that in mind, I simply removed all rice, and products containing rice and/or rice starch, from my diet.
That should have been the end of the story, but I quickly realised, as I failed to eliminate my symptoms, that it wasn’t just rice forcing to me to sleep for an extra four to five hours a day, it was all solid food – with carbohydrates being particularly troublesome. Fruit and vegetable smoothies appeared to have no ill effects, leaving me to wonder if the act of chewing was itself problematic. This revelation immediately placed me in a topsy-turvy world: wasn’t chewing supposed to be essential to starting the digestive process? How was it that tiny portions of food (I was down to eating one light snack a day, then using the entire afternoon to sleep it off…) were making my digestive system work so damn hard?
It looked like the answer lay in a treatment that I had received at the hospital but had completely forgotten about. In my previous post I wrote about how difficult it can be as a chronically ill person to deal with what seem like the unnecessary excesses of the emergency department: what I had ignored in the melee was the four doses of antibiotics (three orally and one shot in the butt that left a bruise the size of a Derby Kiss) that had been administered within the 24 hour period. My gut flora was in disarray, and taking a glass of Andrews probably cleared out the few remaining helpful microbes that were hanging on for dear life.
Doctors may not currently be willing to admit this, but there is long-standing evidence that links gut health (or the lack thereof) to the symptoms of Chronic Fatigue Syndrome, and therefore, by association, Fibromyalgia Syndrome. I had seen this information pop up in more than one online support group, and had planned on looking into it further – as it turned out, it was a necessity that forced my hand. To get a better understanding of what was happening to me, I first had to learn what Leaky Gut Syndrome and Small Intestine Bacterial Overgrowth (SIBO) meant for someone with my pathology.
Firstly SIBO sounds a helluva lot like Irritable Bowel Syndrome and, like a lot of women with Endometriosis, I am no stranger to the regular cramping, bloating, constipation and diarrhoea. I had simply assumed that those were the inevitable companions of an inflammatory illness; until last week I had no reason to tie them to the Fibromyalgia.
It has been suggested in medical journals for over a decade that there may be a link between IBS and Fibromyalgia, showing that abnormal bacterial growth may be responsible for many of the less understood symptoms. However, if the problem was SIBO alone, then surely the powerful antibiotics would have made swift work of any bacterial overgrowth. But, what if bacterial overgrowth was only part of the problem?
Leaky Gut Syndrome is controversial – so much so that the NHS will only ever refer to it inside of speech marks, as though they were talking about ‘Bigfoot’ or ‘alien abduction’. This may be because most of the proponents of this diagnosis sit squarely underneath the alternative medicine umbrella.
Whatever the less progressive practitioners may think, the idea of a porous digestive tract is hardly a new one; ask any sufferer of Crohn’s or anyone with Celiac’s and they will explain that Intestinal Permeability is the cause of many of their woes. Bacteria escaping through the gut wall is precisely what causes the inflammatory response.
What both of these manifestations can lead to is a malfunctioning of the intestinal muscle, slowing down the processing of any ingested food and allowing the bad bacteria to sit in the system for far too long. Left untreated it will become an ouroboros of symptoms cascading into one another.
For the sufferers of both CFS and Fibromyalgia, this can mean a worsening of their symptoms without necessarily getting the most appropriate treatment. A very recent study has shown people with CFS have less diversity in their gut flora and are also prone to growing more of the inflammation-causing bacteria.
…the researchers said they were able to correctly classify whether 83 percent of the study volunteers had chronic fatigue syndrome or didn’t. If these findings are confirmed in a larger study, the authors suggested that the gut microbiome could be used as an additional test to determine if it’s likely that someone has chronic fatigue syndrome.
The new research “is yet another study that proves this is not a psychological disease,” said Zaher Nahle, vice president for research and scientific programs at the Solve ME/CFS Initiative, a nonprofit organization focusing on myalgic encephalomyelitis/chronic fatigue syndrome.
What this information means for me is that, despite the rather stubbornly pervasive concept of Fibromyalgia being almost exclusively psychological, I now have more practical solutions to draw upon when my body starts to malfunction. I started taking a probiotic as soon as I remembered the full extent of the hospital treatment, and I can feel my body moving back into the position of needing to rest rather than to sleep. Although my appetite is still a little haywire, I have managed to eat a (no-carb) meal at least once a day for the past couple of days, and I’m almost at the point of waking up hungry again.
What this information means on a wider scale is that medical practitioners, and anyone who is trying to be an ally, needs to understand that treatment plans should be more of a mosaic than a Pantone swatch. That one drug that worked well in the trial may have only been helpful to people who had been in a car accident, and that person ‘you heard about’ that cured themselves with Yoga and Green Tea may not have had the same pathology as the person to whom you’re imparting your medical advice.
The bottom line is that the simple solutions, as easy as they are to believe in and foist upon others, may not always be the best course of action for a problem steeped in complexity.