I see this statement all over the place. Book titles, websites, natural health sites, spiritual health sites, yoga programmes, meditation programmes – you name it, every single corner of the health market seems to have made this claim.
At the risk of raining on everyone’s parade, I’m writing this in the hopes that I can save advanced fibro sufferers the crushing disappointment that will inevitably follow if they choose to pursue whatever purported method of “curing” their illness is currently being touted.
Firstly, I need to make it clear that I am all for finding the way to recover from fibromyalgia. I would give almost anything to find the answer, to recover my own health, to give the answer to other sufferers too. I never stop looking, never stop researching, never stop experimenting with different possible treatments.
But I have also had more than my share of rising excitement at the prospect of the next new specialist being The One Who Will Have The Answer, or of the latest supplement discovery, made through researching medical studies and extrapolating information, being the missing link to recovery. The disappointments have been soul-destroying when it has turned out not to be the case. I am still hopeful that, one day, this will happen, but it sure as hell hasn’t happened yet. If and when it does, you will be the first people I tell.
In brief, this is my experience of fibro, and my resultant understanding of this relentless illness. It isn’t based solely on my own personal, lengthy history with it, but also on research, study, and seeing and sharing the experiences of others in the same Severe Fibro boat as me. Obviously, I am fully aware that everyone is different, what hasn’t worked for me may well work for someone else, and that less advanced cases of fibro may be less intractable than mine, but if any of this rings a bell with you, please, please be wary of any claimed cure:
1. My fibro went undiagnosed for probably 46 years, because I was 49 when “it”, aka my “mystery illness”, was finally given a name and I can trace its onset to age 3. It was diagnosed by two separate rheumatologists at two different hospitals in 2011, but only after chemo for breast cancer had greatly exacerbated every single symptom, and given me several new ones to boot. I think it may be possible to reverse fibro if it’s diagnosed early enough, before the progressive damage to multiple systems has become too bad to treat successfully. However, most cases of fibro go undiagnosed for years, by which time chemical and other intolerances make it virtually, if not literally, impossible to supply the body with the specific substances it needs to make the necessary repairs without worsening the illness.
2. I have been studying natural medicine, alternative medicine, clinical nutrition, herbalism, diet, etc., etc., for around thirty years. There aren’t many alternative things I haven’t tried. I’ve had colonics. I’ve seen kinesiologists, aromatherapists, psychologists, counsellors, reflexologists, chiropractors, osteopaths, and spiritual healers. I’ve had reiki, umpteen different types of massage therapies, hydrotherapy, and distance healing. I’ve tried every natural supplement there is, and some synthetic hormone replacements, too. Some of my symptoms are managed by drugs, and I wish I could find a way to avoid that, but my thyroid and adrenal function became so damaged by the late 1990s that I came close to dying, and replacement hormone drug therapy is essential to my continued existence. My diet has been organic and what is now known as Paleo ever since I grew intolerant to a huge number of foods, chemicals, pesticides and additives in the late 80s/ early 90s. I’ve periodically lived on raw organic vegetable juices, and also organic vegetable and fruit juices (not packaged, all done with a masticating juicing machine at home) just in case fruit was the missing magic ingredient. I have been dairy-free, gluten-free, and meat free. I remain tap-water free. In short, I have tried more different approaches to fixing myself than I ever knew existed when I first started out looking for answers in the 1980’s. I have been successfully patching myself up with natural medicine and nutrition for decades, and in all that long, expectant, hopeful time, I have always been ultimately disappointed. It all helps, but none of it provides a cure. I am, however, completely non-functioning without my many supplements, hormones and other natural health strategies.
3. I firmly believe that until the real cause, the absolute ROOT cause can be identified, a cure for fibro will remain elusive.
4. I also believe that the single thing that perpetuates fibro is lack of Stage 4 Deep Sleep, which is the good stuff that everyone else slips so easily into. We need that Stage 4 sleep before our bodies can carry out all the essential maintenance and repair work on our many systems. Without Restorative Sleep, everyone gets progressively sicker and sicker. Studies have shown that healthy subjects who were deliberately woken as they entered Stage 4 sleep manifested all the signs and symptoms of fibromyalgia after only three days.
5. I further believe that the reason we cannot reach Stage 4 Deep Sleep is because our brains are stuck in Panic Mode, permanently on Red Alert, rigidly fixed in Fight Or Flight mode due to a deep trauma of some kind. It can be a physical trauma, a psychological trauma or an emotional trauma, it doesn’t seem to matter which, and it can anyway be a mixture of every type. In this regard, I consider it very similar to PTSD.
6. I disagree with the health industrys’ claim that fibro is both “non-inflammatory” and “non-progressive”. In my experience, which includes talking to a huge number of other fibro patients and sufferers as well as monitoring my own progress, it is both of those things.
7. I do think that if mine had been identified sooner, I would at least have stood a better chance of achieving a full recovery. Unfortunately – and I blame myself as much as anyone else for this – every approach to my “mystery illness” was made on the assumption that exhaustion was the core problem, rather than lack of restorative sleep. We were all looking at lack of energy production instead of excessive energy expenditure.
Poor energy production can indeed a part of it, but the bigger cause of exhaustion is a result of all the many ways that the hyperactive brain and nervous system uses up our energy in the mistaken belief that everything around us is an immediate threat that we must be protected from. Hence, we have over-active immune systems which lead to auto-immune disorders, or an exhausted immune system that leaves us open to every viral, fungal and bacterial infection going.
8. We have enormous problems relaxing, because our brains are on the look-out for danger the entire time. We suffer anxiety as a result, and are unable to achieve restful sleep. This leads to an unimaginably huge number of problems that manifest as a multitude of both physical and mental health problems, like depression, anxiety, mood swings, lability, digestive difficulties, malabsorption, leaky gut syndrome, recurrent candiasis, migraines, headaches, nausea, vomiting, sinusitis, rhinitis, gastritis, dermatitis, painful bones, joints and muscles, poor dentition, cognitive dysfunction, hormone disruption, IBS, diarrhoea, constipation, exhausted adrenal glands, messed up thyroid processes, low or high BP, postural hypotension, fainting, dizziness, vertigo, balance issues, muscle weakness, allergies, intolerances, and an ever-decreasing ability to make all the conversion and detoxification enzymes that a normal body makes every day. The symptoms are diverse and never-ending, because nothing is getting repaired or rebuilt during sleep.
That impressive looking list doesn’t cover even half of the co-morbid conditions that many fibro sufferers have to live with every day.
9. We have extra – literally greater numbers – of sensory nerves, which mean we’re in constant pain; more pain nerves equals more pain sensors in the brain, just like an old-fashioned switchboard needs more connections for more cables, and that means we genuinely experience more pain than a healthy person. We are bombarded by pain signals from having extra pain nerves. Those pain nerves are also more sensitive to changes in temperature, pressure and pain than normal nerves, because the fibro brain has made them part of the Red Alert defence. This was explained to me by a physiotherapist, who noted that studies done on physically traumatised areas of the body showed that the traumatised/ injured area became re-populated with greater numbers of pain and pressure nerves during the healing process than had existed in that area before. I am therefore infuriated by the popular myth that we “aren’t really experiencing more pain, it’s just that your brain thinks you are.” Our fibro brains receive more pain signals because they have tried to prevent further repeated trauma by building more nerves to act as an even earlier warning system.
And you must understand that the hyper-vigilant fibro brain thinks even stubbing your big toe is a major, life-threatening event.
When we understand all of this, we can see that much of the energy our bodies do produce gets used up on these and other technically unnecessary processes. It’s no wonder that everything fluctuates so wildly or that we’re so exhausted. We need to focus on reducing excessive energy expenditure, not on increasing energy production.
So, the way I see it (and you’re entitled to disagree with me), a “cure” will only be possible if we can find a way to restore restful sleep by re-setting our panicked brains to a more normal level of vigilance, so that they will relax and allow us to finally achieve Restorative Sleep, the Stage 4 Deep Sleep that all of us, without exception, are so deprived of. Only then will the body be able to start repairing all the damage that’s been inflicted on our systems. Mindfulness and endless meditation cds didn’t do it for me. Extensive and extended psychotherapy, EMDR therapy, CBT, and many others also didn’t do it for me, although EMDR was very effective at painfully prising open my locked-tight subconscious to finally reveal the source of my trigger-trauma. Nor did hypnotherapy, praying, visualisation, or chanting (yes, really).
Big Pharma knows the key is switching off the Panic Mode. Two of the most popular fibro drugs in the UK are Gabapentin and Pregabalin. They were developed from the naturally occurring amino acid, Gamma Amino Butyric Acid, or GABA, hence the names of both drugs. GABA is a neuro-inhibitor, which is to say it has a sedating effect on the brain and nervous system. Drug companies cannot patent ANY naturally occurring substance and they can only make their really big money from inventing and patenting their own products. So, they produce synthetic analogues and make their money from selling those.
Our bodies were never designed with synthetic drugs in mind, and however close they are to the natural product, they are never close enough that we can easily assimilate and metabolise them. Some fibro patients, usually those who have yet to develop full-blown chemical sensitivities, do gain some benefit from these drugs, but I have never yet found a single one who has been cured of their fibro by them, or who hasn’t experienced horrible side-effects from taking either of them. My own chemical intolerances, caused by my ever-diminishing ability to produce enough detoxification and conversion enzymes, mean I can’t even tolerate natural GABA anymore. The drug versions are far too dirty for me to even contemplate taking. My GP and I looked at the side-effects lists and he snorted in disbelief.
“You’d probably DIE!” he said.
“I KNOW!” I shrieked back. Oh, how we laughed.
Their listed side-effects are some of my worst symptoms. And I get side-effects that haven’t even been listed yet.
Perhaps if I had understood about fibro, the Panicked Brain, and GABA a couple of decades ago, it would have helped me recover. I’d like to think so, because that would mean I can still help newer fibro sufferers get well now, which I would dearly love to do.
Whilst I would never discourage anyone from trying any new potential treatment that they feel might help them, I would strongly warn against believing any claims that guarantee a total cure for fibro, regardless of its stage of severity.
But then, I’m not selling any miracle products, information or newsletter subscriptions. PLEASE, Beware of those who do.