No big surprise. Studies and trials data twisted to make the drugs look more effective.
No big surprise. Studies and trials data twisted to make the drugs look more effective.
I initially started to put this on Painkills2’s comments when I reblogged her post about cannabis being more helpful and less damaging to us than various thoroughly unpleasant drugs that Big Pharma want our doctors to sell to us.
I found that I’d gone into Rant Mode, so figured I ought to just post my original “comment”…….with apologies to Jo for apparently hi-jacking her post – please see the post before this one for the link to Jo’s site and her post about it –
Reblogged this on effingfibro and commented:
“I only wish it was legal here in the UK……can’t even get MM for cancer pain, never mind all the issues that fibro throws up on top. Apparently, or so my old GP told me, it’s only available here on prescription if you have MS. Nothing else justifies it. Probably because Big Pharma can’t make any money out of it. Makes me livid, the hold Big Pharma has on our health care system. It decries all natural medicine because it can’t make money from naturally occurring substances, then makes fake chemical versions of natural substances which it CAN make money from via patenting (lasts 20 years before others can copy their “original” drug, hence Valium became available as generic diazepam since I don’t know when, the 90’s or possibly earlier, I really don’t know. But that’s where they make their money, the first 20 years of a patented product).
The data is always skewed to showcase whichever new drug they’ve invented – nicked from the natural world – with no regard for side-effects. Big Pharma LOVES side-effects – more drugs needed to subdue the side-effects of the first, still more for the side-effects of the second…….and on you go. Don’t misunderstand me, there are some drugs which I personally couldn’t be without – literally in a couple of cases, because without them I’d die, but the majority of the UK’s health system is dictated to by the drug companies recommendations, so currently all the qualifying numbers from blood tests for type 2 diabetes and cholesterol levels have, in the past year alone, been lowered so that they can insist on patients being shoved onto metformin and statins sooner!
The side-effects of BOTH those drugs are awful, extremely deleterious to human health……which then creates further need for extra drugs to manage the side-effects.
I did a lot of research into all of this earlier this year, when my previously normal numbers suddenly put me into metformin territory and I refused point blank to take it. My cholesterol numbers were suddenly deemed “High” too, and I wasn’t about to take statins, either. They were actually already lower than they’d been for two years, the only negative change was in the definition of the numbers, not the numbers themselves. I’ve been able to massively reduce my “Bad” cholesterol (cholesterol is a much-misunderstood subject anyway) through taking very specific supplements, none of which are claiming to be cholesterol reducing products, I just looked at studies that had been done, decided what I knew about cholesterol fitted in with what the studies were saying, and built my own programme to combat it. No way was I going on statins! And my figures last month were too low to qualify for even these ridiculous new qualifying numbers they’ve come up with, so Ha!
Likewise, I am still reversing my type 2 diabetes, all with natural medicine supplements – herbs, nutritional things, so things like Gymnema, B3, biotin, GTF chromium, and others. I will NOT be scaremongered into taking yet MORE drugs. I need a sodding flat-bed truck to collect my monthly repeats as it is, thanks.
I’m sure if Big Pharma could somehow reinvent dope, MM would suddenly be recommended for a trillion different conditions. Likewise, the recent revelations about Vitamin D led Big Pharma to start “inventing” their own nasty synthetic chemical analogues. Before Big Pharma got wind about D3, the figures were – 75-200 nmol/l = sufficient. 50-75nmol = insufficient. Below 50 was deficient. Once Big Pharma saw how many people were taking way more than the recommended “maximum safe” dose of 400IU a day (bear in mind you’d make around 30,000IU in a sunny afternoon at the beach), they lowered ALL of those figures so that now you have to be less than 20nmol/l to be deficient, and anything from 60nmol is now deemed sufficient. The upper reference range of 200nmol seems to have come down to half that.
All this is because a lot of the pharmaceuticals are still waiting for their horrid analogues to be approved. Once they are, I expect the reference ranges will go back up again.
Even the Vitamin D Council seems to me to have been got at by Big Pharma, because in Feb 2013, they recommended 10,000IU a day, but by the June that same year, they’d changed it to 5,000IU instead. I wrote to them, telling them I was taking 20,000IU/day, and was finding it helpful with a lot of previously intractable symptoms, and asking them why they’d lowered their earlier recommendation. I expected some support for what I was doing, but instead got the most unpleasant mouthful back on email, basically telling me what umpteen doctors had told me – I was going to kill myself doing that. Well, I didn’t, because I know what else to take it with to prevent high blood calcium, which is the risk attached to taking too much D3. I have my bloods checked monthly, and even when my D3 has been up in the 800’s, my calcium is still very normal. I reduced to 5,000IU/d recently, and my last bloods showed a huge drop in levels – I went from 542nmol/l to just 132nmol/l, which explains why I’ve been more ill than normal lately. So I’ve upped my dose again.
Without high dose D3, I would certainly be on metformin AND statins by now, and be having to deal with a whole new batch of shitty, painful, horrible side-effects from them.
I just wish I could get cannabis over here, because then I probably wouldn’t get as much nausea, anxiety, muscle and bone pain, poor quality sleep, rubbish appetite, IBS, or depression. I know it helps with all those things.
Think I might need to convert this “comment” into a post – I appear to have gone off in Rant Mode! Sorry Jo!
To add a little bit to that, it would also help with my nerve pain, and possibly with the actual damage that chemo inflicted on my nerves, too. I have peripheral neuropathy in my feet, and nerve damage to my bladder and bowels. There are a huge amount of symptoms that I am positive would bd helped by cannabis/pot/weed/hash, but it’s illegal over here again at the moment. It’s never been fully legal, but for a year or so, owning for personal use only was legal. Supposedly, we have a thriving black market in the stuff, and a news programme recently pronounced that cannabis is currently “easier to buy than sausages”. Well, I’d like to know where they’re hiding it, because I haven’t even seen any for years!
I’ll do more posts about Vitamin D3 another time, just know for now that if you take high dose D3, you NEED to take Vitamin K2 to send any excess blood calcium to your bones instead of it being dumped into areas of soft tissue like tendons, kidneys, and other very undesireable locations.
Also, please understand that I am NOT a doctor, and any health advice I give on my blog is my opinion, or my experience, and is not intended to be used as a diagnostic or treatment tool by anyone. What works for me might not necessarily work for you, and I am not responsible for any effects you may experience from trying anything I recommend. ALWAYS seek your own doctor’s advice before embarking on any supplements or natural medicine therapies, and do your own research, too. Don’t just take MY word for it – find out to your own satisfaction!
I do a lot of research in my efforts to be well again. The way I see it, if you’re ill, you can never know too much about your body, how it works, why it’s got sick, and how you may be able to help yourself get well again.
Who cares more about you getting well than you? Even the most passionately caring doctor does not have the time, nor the detailed knowledge of our illnesses that is needed to try and find appropriate treatments or possible cures, that we do.
Investigate, research, ask questions, and never take a study as gospel. Just because someone wrote a paper about it doesn’t automatically mean it’s true. Many are skewed in favour of an interested party – and that goes for natural medicine, too, because the supplements industry is a big money industry. Not as big as the pharmaceutical companies, but still big, like the anti-sun industry is. Don’t fall into the trap of thinking all things natural must be good. Just because something is natural doesn’t mean it can’t do harm – arsenic is natural! Many natural medicine products deserve just as much respect as pharmaceutical chemicals do, because some are very powerful. You CAN have too much of a good thing! Also, many nutritional substances in our bodies have to be kept in very fine balance with each other in order for us to be healthy. It’s quite easy to throw out the normal balance between sodium and potassium, for example. If you’re on a low or no salt diet, or take a potassium supplement when you don’t need it, or take more potassium than you have salt coming in from your diet, you seriously run the risk of hyperkalaemia – high potassium – which is THE leading cause of all cardiac-related events in the UK. To me, knowing this means that the still-tenacious fad for No Salt diets as recommended by doctors in the US and the UK is one that is positively dangerous. If you want salt, in my opinion you should listen to your body and have salt. If you have low adrenal function, that will make you throw out more sodium than is good for you, and if you have this condition, you WILL crave salt. Obviously, there are some situations where monitoring or reducing your salt intake would be adviseable, like if you habitually stuff yourself with prepackaged, processed or tinned foods, because they can have very high amounts of hidden salt in them (even the sweet ones – did you know chocolate has salt in?) and you might not even be aware that you’re eating that much salt because processed food stops us from tasting the majority of it in that type of food. (If you took the same amount of salt that’s in a processed meal and applied it as plain old table salt to ordinary, plain food, you probably wouldn’t enjoy the taste very much). If you have clinically high blood pressure, they recommend you cut down on salt to stop it getting any higher (salt increases blood volume, which in turn increases the pressure in all your blood vessels).
So, ALWAYS consult your doctor before taking any supplements or following any advice that I give out on my posts. ALWAYS!
Apart from any other considerations, like allergies, intolerances etc, there may be a clash between some natural medicine products and your meds or another health condition, which is why I keep saying check with your own doctor first.
If anyone feels in desperate need of a full, proper consultation with me, that can be arranged. It’s how I used to make a living before I got wrecked by chemo and radiotherapy, so feel free to email me and we can talk about it. Otherwise, talk to your doctor, do some research of your own, read some studies, examine the evidence, and make your own mind up. We get most of our natural health stuff from iherb in the US, and if you want, I can give you a discount code that will get you money off your first order with them (email me from the Contact Me section). I don’t work for them, and I don’t earn any money out of referring customers to their site (I wish I did!) but I do get points for me to use against my own purchases there. The reason we use them is because they are mostly a lot cheaper than the same products are in the UK, even after VAT and delivery have been added on. They carry a huge range, seem to me to be very good on price, and deliver quickly. I can get an order from iherb faster than from some UK companies! I’ve been getting stuff from them for more than ten years, so they’re an established company with a reputation to protect, not some fly-by-night bunch of cowboys.
At the start of “All This”, the breast cancer chemo, the exacerbation of my mystery illness et al, I had a partner (and I use the term in the loosest possible sense) who simply had to outdo me on every symptom I had. It was a compulsion. Worse, it was a competition. Worse still, it was a competition I had no interest in winning. True, he really couldn’t compete on losing a body part to a life-threatening disease, but he did a damn fine job on presenting his suffering as so much “worse” (for which read, More Important) than anything I could possibly be experiencing.
“My back’s really hurting today,” I said once, staring pointedly at the one sofa which was long enough to lie down on, and which he was currently occupying to its full capacity. I was a few months post-surgery, and in the middle of chemo.
He stared straight back.
“Welcome to MY world,” said this delightful love of my life.
“Please, I really don’t think I can sit up.”
“You snooze, you lose,” he snipped back, referring to the amount of time I’d had the audacity to have been asleep for. I hadn’t made it downstairs til after lunchtime that day, and he was annoyed by that. HE’D struggled out of bed. HE’D fought through back pain. HE’D been quick enough to nab the long sofa for himself.
Anything You Can Do, I Can Do Better……
The thing that got me about that wasn’t so much the lack of sympathy or consideration, it was more the lack of recognition for the endless sympathy and consideration I’d heaped on him and all of his many and varied health problems prior to the cancer knocking me for six – I swear to this day that he had fibro as well. I even bought a massage couch and did an hour and a half full body (and head, and feet – I have many hidden talents!) aromatherapy massage on him once. Just the once, because he didn’t enjoy it and didn’t want another one. The oils he chose stunk, the couch was the wrong shape, the face hole hurt, I wasn’t doing it right…….you get the idea. The point is, I’d tried so hard to help him with his problems (pain, insomnia, light sensitivity, noise sensitivity, weight gain, depression, anger, anxiety, agoraphobia, fatigue – you see why I think he had fibro?) for the whole 6 years we’d been together, and he’d rejected every single idea for helping him that I’d been asked to come up with.
I bought him a lightbox for his depression (his light sensitivity centred around not being able to stand LED displays on the TV equipment in the bedroom, he wasn’t averse to sunlight, just little lights in the dark. Guess astronomy was never on the cards for him,) but it gave him a headache.
I bought him a sunrise simulator alarm clock, to make waking up easier. He hated the LED display (my bad, I really should have seen that one coming).
I sent him to the doctor’s. Being a man, that went down like a lead brick. Doctor sent him to physio about his back and shoulders, and was no use about the depression. Just told him to stop wallowing and get up earlier. Physio gave him exercises to strengthen his core, and he refused to do them.
I bought different supplements, which he hysterically claimed “exploded into green froth coming out of my mouth!” He declined pain killers. He didn’t like our me-imposed Paleo diet, claiming it was the evil broccoli that was making him fat.
I frequently gave up the long sofa whenever I could see he was suffering – I dislike seeing anyone suffer.
In short, I had sympathised myself purple, trying to get him some relief from his myriad of symptoms. He was one of those people who only seem really happy when they can elevate their own suffering to a higher level than anyone else’s, and so he declined or derided any and every offer of help.
I think when my cancer hit, he was angry because felt out-done by it. He managed to be incredibly supportive for about……I was going to say “until chemo”, when he appeared to pass responsibility over to oncology, but it wasn’t even as long as that. A week or so of having to cook dinner while I was stuck in bed literally unable to move post-surgery and pre-chemo was enough for him. I asked tentatively one night at 8pm if we were going to be eating anything that night, and in response he threw an apple and a yoghurt onto my bed from the doorway before sullenly skulking off again. Anyway, it’s very sad and all that, but I think the prospect of losing the Pain and Problems competition was too much for him, and he lost his short temper over it.
But he isn’t the topic of this post. That can wait for another time. The point of this post is to highlight how easy it is to find yourself in the middle of a competition that someone else has entered you in, with the “winner” being the one in greatest suffering.
Let’s get something straight. Chronic illness, immediately life-threatening or not, sucks, period. We each of us suffer in our own, sometimes unique, way. We adopt and adapt different coping strategies. We adapt our lives, our expectations, sometimes our homes, in order to handle our illness. We come to some sort of acceptance. Sadly, it seems almost impossible to get our family, friends, acquaintances and others to adapt in a similar fashion.
What some people think is sympathy – Oh, I know! I had JUST the same thing happen to me on Friday! I was SO exhausted, I couldn’t go to work! (no, you had a self-induced hangover from doing shots at that leaving do that didn’t finish til 3am….) or, Oh, I know! My back’s been KILLING me! (and yet you seem to be moving freely) – comes off as one-upmanship. These and other seemingly minor health issues are clearly very significant to them, and are fairly obvious cries for a little bit of sympathy. But they break the unwritten Sympathy Code. Yes, whether you’re aware of it or not, there’s a definite Sympathy Code. It goes along the lines of “Don’t ask me to sympathise with your terrible athlete’s foot when I’ve just had my leg amputated”, sort of thing, but infringements of The Sympathy Code happen in every sphere of suffering.
Some of us are in more need of more sympathy than others. and any prior experience of Sympathy Code Infringements were put firmly into perspective at my first breast cancer support group meeting.
After basic introductions, we were invited to share more about where we were “on the cancer journey”. (Journey. Ha! Like it’s a day out to the seaside, or a trip to the Maldives, or to some other place with a beautiful, yearned-after destination. The cancer “journey” has an alarmingly limited number of destinations, the only yearned-after one is survival, and it’s rarely that beautiful in practice.) It rapidly became apparent that unless my tumour exceeded certain dimensions, I wasn’t about to find myself very high up the breast cancer hierarchy. I had naively assumed we were all in the same boat, and were there to mutually afford support, insight, comfort, encouragement and sympathy to each other. I was wrong. It was a shock to find that I was once again in unwilling competition.
One woman said, tremblingly, that her tumour had been 2cm when they found it. Another indignantly cut across her with, “Well, MINE was FIVE, so imagine how I felt!” Mine was only 4.5cm, so I didn’t feel able to compete.
Anything You Can Do, I Can Do Better……..
Some had had lumpectomies, retaining the bulk of their breast, including the nipple. Others, like me, had had to have a radical mastectomy, where the whole lot is removed.
Anything You Can Do……….
Another woman raged about the unfairness of how chemo had destroyed her chances of a third, much longed for child; I had had my last possible chance of a first child removed in the same way, and at that point would have cheerfully killed to have had one, never mind two. I gazed in jealous disbelief.
Anything You Can Do……….
Another outdid all of us by pronouncing that she wasn’t frightened by having breast cancer. She truly seemed to believe that, although I am still at a loss to understand that. Cancer was terrifying to me. Still is.
Anything You Can Do……….
Then there were the ladies crocheting chemo hats for charity, or making jam, or running marathons to raise breast cancer awareness, doing 10km Moonwalks in their altered bras, sponsored swims…….the list of their achievements left me feeling inadequate, and like I was somehow letting the side down by being too ill to do any of them.
Anything You Can Do, I Can Do Better……..
And I’m finding the same attitudes in the fibro community. I kind of expect it from Normals, those who simply have no comprehension of what someone with a chronic illness goes through every day. Yet pain, illness, all of it, it’s all relative to the individual. It’s no walk in the park to have to navigate illness on a daily basis. It doesn’t matter if you have severe fibro or mild fibro, fibro is a bitch. CFS is a bitch. ME is a bitch. Arthritis is a bitch. Disability is a bitch. Migraines are a bitch. Pain is a bitch. Depression is a bitch. Every chronic condition, physical, mental or emotional, is a bitch. None of it’s fair. All of it deserves sympathy and support because all of it matters intensely to the individual concerned; whether it matters to you as an outsider to that person’s life is immaterial, it matters to them.
So enough with the one-upmanship, enough of the competition, enough of the automatic ranking of someone else’s condition against yours. Isn’t it time we all of us developed a little more compassion?
What do you think? Do you think you deserve more sympathy than others with the same condition, if you perceive your experience of it to be worse than others’? Do you find yourself upping the stakes to win the adversity competition? Do you look down on other chronically ill people who seem to have got off more lightly than you? Are you jealous of those who seem to be coping better than you, or does it make you feel deficient?
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.
I have a great deal to say about breast cancer. Excuse the pun, but I definitely have a need to get it off my chest, just like they did to one of my boobs.
I was considered too young for breast cancer when I was diagnosed. I was 45 and looked more like 35. My age was always being queried. Both parts of that sentence have now changed. Breast cancer is striking women at a younger and younger age, and 45 would not now be considered young because of the sheer number of 20 and 30 somethings who are being diagnosed. I feel for them. I feel for any woman of any age who is forced on this sinister journey.
As for always looking at least 10 years younger than my chronological existence on the planet…..well, chemo, steroids, surgery, radiotherapy, hormone treatments and being thrust chemically into an early menopause have seen the end of that. I used to be referred to as “that girl” when mothers with wayward toddlers told them to be careful not to run into my legs, but it rapidly changed to “that lady” when iatrongenically accelerated ageing kicked in.
Suddenly, I was being called into medical appointments as “Mrs Young”, instead of “Miss Young”, an assumption that can only have been made on my appearance of age. That pissed me off. I started to sound like that Dick Emery character, Mandy, I think her name was, because I found myself hissily correcting anyone who said it with,
“Miss. I’m not married. I’m MISS Young.”
It never did sink in with my local hospital, and one day they left me alone in a room with my notes. I pulled out a big black marker pen and wrote “MISS” in front of my name.
I went so far as to underline it.
But they still call me in with “Mrs Young, please,” and I still sound like Mandy.
Actually, now I look so much older, so much more decrepit (my hated rollator – a hideous yet handy wheeled trolley with a seat – only adds to the age-perception), I’m not sure which is the most insulting or depressing: I infer being thought of as old and unmarried, as opposed to young and unmarried, as the very definition of shrivelled spinsterhood, and I imagine the Drs and nurses do, too. The implication is that, despite my apparently advanced years, no-one has ever, in all that time, wanted or loved me enough to put me in a flouncy white dress and say so publicly.
I preferred it when they all thought I was young and single, the latter by choice.
Before my surgery, which was within 3 short weeks of my diagnosis, I was a UK size 8-10. Occasionally, when my then mystery illness – the fibromyalgia – was very bad, I was a 12. My weight bounced between 9 and 9 1/2 stone (times that by 14 to get the equivalent number of pounds if you’re in the U.S, and don’t ask me what it is in kilograms, but it isn’t much). I was borderline skinny. I modelled. I acted. I rode and trained horses. I danced. I had an athletic, boyish figure, and hadn’t worn a bra since the unfortunate incident of My Mother, The Washing Machine, And The Underwired Bra.
Let me explain that. My mother was notorious in our house for ruining clothes in the top-loading washing machine that lived in our cloakroom from the 1970’s onwards. Inevitably, being 17 and flat-chested, I had bought myself a glamourous bra with impressive padding and underwiring designed to boost my tiny ‘A’ sized assets. Just as inevitably, it went into the washing machine the second I brought it home, because “You never know who else has tried it on!”
I still don’t know how my mother did what she did to clothes; she practically invented wide, baggy cropped sweatshirts and tee-shirts at a time when fashion dictated they be long enough and skinny enough to be tucked into our baggy jeans and secured with ratchet belts. Anyway, I was smooching with a good-looking but not very tall young man in a packed nightclub one Saturday night, proudly sticking out my padded and underwire-boosted chest, when he suddenly stiffened – and not in a good way. He stood very still. Expectantly, I did the same. Was he about to kiss me? He was looking down with an unidentifiable expression on his face. Down to where something was visibly poking him in the chin. I squinted in the gloom, wondering what it could be. It looked like some sort of radio antenna…..then I realised in horror that it was one of my underwires. It turned out that Mother And The Machine had somehow shredded the fabric stitched over the underwire at the (non-existent) cleavage end; moorings thus removed, it had wriggled its way up and out towards freedom with every sway of my body. Until it hit something solid.
I was mortified! I hastily disengaged the wire from this poor lad’s dented chin, and ran to the Ladies loos, where I spent the rest of the evening whimpering with shame. I furiously ripped off my glamourous new bra and dispatched it immediately to the nearest bin. Not really what I’d had in mind for it.
And that was enough to put me off bras forever. Funny, that.
Luckily, because I never graduated beyond a ‘B’ cup, there was never very much for greedy gravity to grab a hold of, and I was active enough to maintain the natural bra muscle that we all have. I reasoned that, like any other muscle, if it wasn’t kept in full use, if it was let off work by virtue of a bra doing all of the support instead, then that would surely be the quickest way to get saggy boobies. I wore sports bras sometimes, but only if I was in the gym, or running, or dancing, or any other similarly strenuous activity that might give gravity more of a purchase and drag my perkies south. Of course, there were still the occasional recreational bras, worn to excite and invite, but I rarely wore ordinary bras, and certainly not every day. I thought them uncomfortable, inconvenient and unnecessary.
And it worked for me; at 45 I had almost zero ptosis, which is medical jargon for drooping breasts. Everything was still pointing proudly upwards, neither boob had tried to make friends with my armpits and I passed the pencil test with ease.
Now I can’t pass the pencil-case test. Not even the really big, jumbo-sized ones.
This will have to serve as an introduction to my breast cancer story. More to follow, but right now, I’m booked for my nightly sofa-snuggle time with my beloved. He doesn’t care that I have one saggy boob that needs major bra support in public.
But then I’ve never poked him in the chin with a suddenly freed underwire!
There are things that help in the battle with fibro, and there are things that hinder.
Some days I’m drowning, and some days I’m a veritable olympian swimmer.
This is my list of some of my own Life-belts and Lead Weights. What are yours?
(I keep trying to space the next line lower down, but for some unfathomable reason, despite reporting that it has successfully updated this post, it sodding well hasn’t. Please pretend there is a suitable gap before both the Lead Weights and Life-Boats headings!)
Stress. Not just the usual mental and emotional stressors, I react badly to physical stressors, like pushing myself when my body is screaming in protest at the activity. Or being too cold, or too hot, or too tired. Or getting a bug (not the multi-legged/winged kind, the viral or bacterial kind).
Various Medications. Binders, fillers, additives, who knows? It could be something as minor as one manufacturer using a different product to another manufacturer for cleaning their machinery. I react badly – sometimes REALLY badly – to generic versions of branded products. Or to different formats of the same product from the same company. I react horribly to a huge number of medications that are ALWAYS considered “well-tolerated”. (Apologies for resorting to caps for emphasis, I seem incapable of managing to use the bold, underline and italic buttons without my cursor shifting position. The examples above were clearly a fluke. And then there’s the bar with My Site, Reader, Write, etc, that keeps moving down to obscure what I’ve just written. Ditto the Preview, Publish, Save Draft bar. Advice, anyone?) The list of “Do Not Prescribe, Intolerant” meds in my GP and hospital notes is never-ending and continually growing. Sigh.
Processed Foods. Chemicals, additives, hormones, anti-biotics, E numbers…….read The Great Food Gamble, by John Humphrys, for a clear insight into what modern farming practices do to our food.
Tap Water. I kid you not. I have to drink bottled water. There was a time when I also had to wash and cook food in bottled water, too. These days, since my hypothyroid issue was addressed with T3 (I don’t convert the standard T4 (thyroxine) into the active form (T3, tertroxin, liothyronine) that is used by the body), I can just about tolerate drinks made with Maxtra filtered water, and food cooked and prepped in same. If I’m being really sensitive, like during a flare, tap water even irritates my skin if I wash or bath in it.
Judgement, Intolerance, Arrogance. Not just doctors and consultants, non-medical people, too.
Some OTC / Natural Medicine Products. Binders, fillers, additives, sometimes just the active ingredient. Weird. I can almost never take powdered tryptophan, which purports to be pure, yet can tolerate it in cottage cheese. I can’t take GABA (Gamma Amino Butyric Acid, a neuro-calmer) or the calming amino acid theanine without experiencing agitation and palpitations instead of serenity and calm. Theanine is high in ordinary tea, and is very likely part of the reason we turn to “Tea!” in any crisis. Again, I seem to tolerate drinking tea.
Bad Weather. Gloomy, grimy, grim grey days drag my mood to the same description. Cold weather makes me want to hibernate. I’m a sunshine girl.
Bad Relationships. No explanation required. Self-removal from situation definitely required in name of sanity, but impossible in cases of family. Bummer.
Flares (please see “Flare You Go Again…” post.
The General Election Results. Another 5 years of Conservative cruelty headed our way.
Ben. Love, support, faith in me, understanding, communication, practical help, cuddly bits, sexy bits (blush)
My New Friends Here.
My iPad, my iPod.
Movies, TV Dramas, Comedies, Stand Up Comedy, Informative Documentaries, Talent Shows (esp singing, dancing).
Helping Other People.
Travel, Holidays. Except that the logistics of lugging med supplies and walking aids has now made this impossible. I haven’t been away anywhere for 6 years, and that was the first time for the preceeding 5 years, too. Ha! So that’s once in 11 years. I have Location Envy for all of you who are lucky enough to live near a beach, mountain, lake or other area of natural wonderfulness.
Fluffy, Fleecy Throws.
My Sheepskin Slippers.
My V Pillow.
My Heated (or cooled) Water-bed.
My Lightbox. Stimulates all kinds of hormone production and release, and an essential when I can’t face opening the curtains.
My Natural Medicines. Aminos, vitamins, minerals, hormones, essential oils, and others. I’m definitely worse without them, and it shows in my monthly blood tests, proving the effect is not placebo. I even reversed my raging osteoporosis using two vitamins that every Dr I know told me did “nothing”. I have the bone density scans to prove it. Some of my docs suffer so badly from cognitive dissonance that even with the scans they can’t accept it. Others are just happily amazed.
My GP. Total saint. Falls into latter category above.
Mineral Water. Every process in the body works best with optimal hydration. I drink around 2 litres of plain bottled mineral water a day. I never drink the fizzy water, or the flavoured stuff. I actually like plain old, flat old water! It’s not difficult to do when I’m having to swallow so many meds and supplements several times a day.
My ice-packs (migraines).
Some Of My Meds. I wouldn’t want to be without my migraine meds, or my anti-emetics, or my steroid hormones, or my painkillers, or……ok, I guess I mean ALL my meds.
Counting My Blessings.
There are probably more, but the fog is swirling in today. B had huge trouble waking me up this morning. Not sure why. Feel really quite unwell.
One of the most difficult aspects of living with fibro can be the persistent recurrence of a “flaring up” of all your symptoms. Everything becomes temporarily much worse, and previously manageable symptoms suddenly become overwhelmingly difficult to cope with. You can be in flare, be having a flare, or be flaring. Flares can last for almost any length of time, ranging from a few hours or a couple of days, right the way through to a few months. It seems to be dependent on how severe your fibro is, how long you’ve had it for, how far you’ve been pushing yourself, and how much time out you can take in order to recover from the flare. If you keep on pushing yourself, you will continue to experience flares. The real kicker is that you often have no idea that a flare is on the way, so they feel like they’ve come out of the blue. The reality is that they are always caused by a stressor of some form, be it mental, physical or emotional. Always.
Fibro Flares are deeply disheartening. As everybody’s experience of fibro is slightly different from person to person, so too are the flares. Some people have IBS as part of their condition, others don’t. The illustration given here might not include all of your symptoms, and it might include some you don’t suffer from. The process, however, is common to all of us, as is the pain, depression, exhaustion and brain fog. We all get those.
Broadly speaking, it goes something like this:
You’ve just begun to learn what your current limitations are and how to accept them. You’ve made peace with the fact that you probably won’t be entering any 10K charity runs in the foreseeable. You’ve learned about pacing, or how to not do too much on those rare occasions when you suddenly have some energy available to use. You might have managed to go out and meet friends for a coffee earlier that day, or something else “normal” that you wouldn’t have given a second thought about doing in your old life. Like popping down the road to the shop(s). Or loading the laundry. Or having a bath/shower. Or getting up and actually managing to put on some clothing that isn’t pyjamas. You’ve even managed, with help, to change the bedlinen. You’re sure that you haven’t pushed yourself too far. On the whole, you’re feeling pretty pleased with yourself. You’re feeling that, finally, you’re starting to get a handle on this thing. That it’s manageable. Not easy, not convenient, but manageable.
So you go to bed, revelling in the feeling of your lovely clean sheets, feeling optimistic. You mentally compile a list of things you’re going to do tomorrow. You’re coping. You tell yourself it isn’t so bad, that there are a million other people who fight much harder battles than the ones you’re fighting. You’re lucky, really. Tomorrow is going to be another good day. You even begin to think that there’s something in this much-vaunted “positive attitude” that everyone bangs endlessly on about. You’re on top of your pain meds for the first time in months, and you’re taking some new supplements that really do seem to be helping. You’ve even had the confidence to arrange another social outing next week, leaving you enough time to rest up in preparation, and you’re looking forward to that immensely. You love meeting up with people. You always have. Things could definitely be worse. You are finding some measure of control, and that in itself helps with your stress levels.
You feel yourself slipping comfortably into sleep, which pleases you even more; ordinarily, you’d be tossing and turning with pain/discomfort, or with restless legs, or with hot sweats, or any of 116 other different obstacles to your rightful entry to the peaceful land of nod. Tomorrow is very definitely going to be a good day. You start to think you might have turned a corner. Hey, you might even be getting better!
Apparently, you’ve slept through the night – another rare occurrence that briefly fills you with hope. But then as consciousness kicks in, your first thought is a baffled “What’s wrong with my hands/ neck/ back/ hips/ legs/ feet/ chest/ throat/ eyes/ stomach/ head/ [insert other applicable body part here]?” Or, “Why can’t I move? Why does everything hurt?” Or, “What the hell’s wrong with me NOW?”
It feels like the entire fleet of Eddie Stobart lorries has repeatedly run you over in the night, closely followed by a little man with a very big hammer who must have methodically beaten the crap out of you. You also feel faint, shaky, and quite violently nauseous. Someone has obviously poisoned you whilst you slept – it’s the only explanation. It reminds you of that James Bond film where he’s pretending to be Japanese, and an enemy spy drips poison down a fine string dropped through a hole in the ceiling directly over his bed, trying to get the poison into his mouth. In the movie, it drips onto his pretend wife’s mouth instead, she licks it off her lips in her sleep and dies an agonising yet swift death. (Obviously, none of this has REALLY happened, but your brain is doing weird gymnastics in an effort to provide a logical explanation for these horrible physical sensations.) You briefly think that the Japanese wife’s death might have been preferable to the screaming pain that’s ripping through you this morning.
And why do you feel MORE tired than when you went to sleep last night? You went to bed feeling pleasantly sleepy, you had an unbroken night’s sleep, you slept for a reasonable number of hours, so why do you feel like you spent the night doing an army assault course?
Your brain isn’t working properly. You feel foggy, groggy, soggy. You can’t remember what you’re supposed to do about all these different symptoms. You don’t understand what’s going on. You just can’t think. So you just lie there.
Welcome to a full-blown flare.
At some point, you see the little pot of pills on your bedside drawers, which you or your partner/carer will have filled with your morning meds and set out the night before. This triggers you to take them. It hurts, reaching for the pills. It hurts reaching for the water to wash then down with. You ease yourself painfully back into a semi-recumbent position against your pillows, which feel flat and uncomfortable. Last night they felt full and fluffy. (- What happened to their promised magical “bounce back” properties?) But that’s the least of your concerns today. Today it all comes down to coping with this alarming exacerbation of all your usual symptoms – the very same symptoms you were congratulating yourself on managing so well last night. You might even have developed one or two new ones, just to add to the fun – a rash, a new area of pain, something else that’s changed, broken or dropped off in the night.
You realise that you’re desperate for a pee. Your IBS has also decided to join the party, and as your guts twist and cramp inside you, you realise that you MUST get to the bathroom urgently, or you’re going to poo all over the clean linen you managed to put on the bed yesterday. You realise with despair that it was probably that simple act of changing the bed that triggered this particular flare.
Getting out of bed is hard at the best of times, and in a flare, it’s more than enough to reduce you to tears. You shuffle, bent over, dripping tears on the carpet, to the bathroom. You can’t move quickly. You hope your morning pain-killers kick in soon. You barely make it, and as you collapse onto the toilet seat, you see that you have already soiled your knickers and pyjama bottoms. Tears of pain turn into tears of frustration and humiliation. You feel elderly, like an incontinent resident of an old people’s home. You feel betrayed by your own body. This isn’t your life! How can it be?
Round about now, depression kicks in with a vengeance. In a flare, this is the evil combination of reactive and chemical depression together. Hopelessness smothers you.
Once your guts have finally stopped spewing their contents into the toilet bowl, you heave yourself up and set about sorting yourself out. You sob your way through cleaning yourself up, rinsing your knickers and pyjama bottoms, pulling out one of the incontinence pads that the district nurses made you jump through hoops of of embarrassment to get delivered to you on a regular basis, and a clean pair of Bridget Jones-style Big Knickers to hold it firmly in place. You dig out a clean pair of pyjama bottoms and drag them awkwardly on.
You shuffle miserably, dejectedly, painfully back to bed. You take a double dose of your anti shit-yourself meds and hope it’s stopped. You take two of your anti-spasmodic IBS pills as well. You still feel nauseous, so you also fish out your anti-emetics from your bedside drawers. You lie down, hoping to escape into sleep. The nausea increases, and you lie there shaking, willing that pre-puke liquid that fills your mouth to go away. It’s no good. You’re going to throw up. You reach for the bowl you keep under the bed just in time to chuck up your morning pills, your pain-killers, your anti-emetics, your anti-spasmodics, and your anti-poo pills. You see them, floating by themselves in a sea of greeny-yellow bile.
You rinse your mouth with the water you keep by the bed. You wipe your mouth and hands with the kitchen towel and baby wipes you keep next to the bowl. You can’t face taking the bowl to the bathroom to empty it, so you push it under the bed instead. It will have to wait.
You think of all the things you planned to do today and realise you aren’t going to be able to do any of them. You suddenly understand the meaning of “disabled”. Your ableness has been taken away. You are literally dis-abled. Tears prick the back of your eyelids again.
Mercifully, at that point you fall asleep.
Some time later, you are awoken by a persistent noise. You dimly realise it’s the phone. You groggily answer it, squinting at the display and seeing it’s a call from one of your friends. They want to come over and pick you up, take you out and cheer you up. Lovely friend. You try to explain how you’re very grateful but that you’re not going to be ABLE to do that today, much though you’d love to. You thank them profusely, and you mean it. The acrid stench of vomit winds its way from the bowl under the bed up into your nostrils, reminding you that you still need to empty it. The idea, and the smell, makes you feel sick all over again. Because you’ve thrown up all your helper meds, you’re also still in pain, your guts are still cramping, and you’re aware that you’re quite likely to shit yourself again in the next few minutes.
And the lovely friend says,
“You know, I’m sure if you just made a BIT more of an EFFORT, you’d be fine! You can’t let your life be ruled by your illness! I thought you were stronger than that. You need to pull yourself together – you must be feeling sorry for yourself today. A bit more positive thinking, THAT’S what YOU need!”
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