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.
The last few months have been worse than before.
The last few weeks have been worse still.
The last few days have been the pits.
I’m just so tired.
My brain feels like it’s trying to waddle through treacle. Thick, sticky, treacle. I can usually work out what I need to do to take the edge off the latest arrivals to the Party Of Fibro Symptoms. I can usually find a particular med, or a particular supplement that makes me feel better. I’m used to managing my symptoms. Dammit, I’ve had enough practice over the three decades I’ve been dealing with this .
But the last few days, I haven’t felt *just* fibro-ill. I feel ill-ill, like acutely-something-wrong-ill, as opposed to chronically-ill-ill.
And that scares me.
My insomnia has been replaced by sleeping like a corpse. Whereas before, my norm was to fall asleep for a few minutes or maybe an hour at a time from 11pm onwards, and finally “go to sleep” at dawn/ 4-5am, now I’m falling asleep at 11pm, waking up briefly then properly passing out by midnight. I’m not waking in the night. I’m not even waking when B brings me coffee and my yoghurt drink to take my morning pills with at 7.30am. I’m still asleep, buried deep inside a black blanket of unconsciousness, when he brings me breakfast at 8.00. It got so bad that we had to change my breakfast to a completely cold one. Congealed scrambled egg is never appealing. Plus, I’m waking up feeling even more nauseous than usual. I have to take my meds, plus some anti-emetics, before I can contemplate putting anything else in my mouth.
Then, when I’ve eventually dragged myself free from the clutches of the big black blanket, I find I’m in tears. I force my breakfast down me. I take my supplements. I try to keep the blanket off me, I push with all my might, but it takes all my strength; I fall asleep again. I don’t wake for hours, sometimes not til tea-time. I’m sleeping all night, then again til 4.30pm. Then I’m asleep again – properly tucked-down asleep as opposed to dozing sitting up sleeping – by midnight.
I’m sleeping up to 20 hours a day again, just like I was when all this very first got critical, back in my thirties.
Yesterday, I had to buy, write and post Father’s Day cards, and a birthday card. A simple matter of stopping off en route to the doctor’s where I was already a week overdue for collecting my monthly meds. I was to get cards, go to the doctor’s, collect my meds, order next month’s, come home, write cards, address envelopes, stick on stamps, and get B to post them in the very nearby post-box that I can only make it to on a really good day.
I managed the cards very quickly. I was slightly waylaid by a conversation with a fellow blue badge holder, over a mutual rant about non-disabled drivers taking up the disabled spaces, but nothing lengthy. She was a pleasure to talk to.
I got to the doctor’s, but by then was so utterly exhausted that for once I was completely unable to fill out my repeats. My brain just wouldn’t do it. Waddling through treacle, it refused to even look at the forms. It was too busy concentrating on how to take the next step forwards to start mental gymnastics, even the low-level, forward-roll type gymnastics of ticking boxes. I came home, went straight back to bed and fell asleep til tea-time.
I fell asleep again after tea. Woke up at 9pm. B was working late, so we broke our usual 9pm meet-on-the-sofa agreement and got there at 10pm instead. He posted the cards for me before joining me.
We were back in bed by 11.30. He was asleep immediately (he always is), and I was asleep by 12.30. Practically unheard of for me. I was always a night owl, even before insomnia proper was booting me up the arse on a regular basis.
I had nightmares. Horrible, violently imaged nightmares. But I did sleep through. And then found myself smothered by that big, black blanket of exhaustion and depression and sleep this morning.
Was it because I dared to go “out” yesterday when I felt too ill to do so? Was it the conversation in the car park? Was it buying and writing the cards? Was it something I took? Something I didn’t take? Something I took too much of? Too little of?
I had to go again to the doctor’s today. Monthly blood test time. Ordinarily, I try to combine the visits. I collect scripts/meds when I have a blood test or my monthly GP appointment, but this month I’ve been so ill that I was over a week late collecting my meds, and had to make an emergency run yesterday. I only noticed I was running out of essential stay-alive meds when I realised my pot of them was nearly empty on Wednesday. I’m never late collecting them. Never.
I was too ill to do the repeats yesterday, so told them I’d bring them in today. Fat chance. I was too ill today too.
The first thing that penetrated the black blanket this morning was pain. I seem to have pulled a muscle in my shoulder during the night. Then nausea. Then gut cramps. Then my mouth tasting like a dirty bird cage. Then enveloping exhaustion. Then tears.
Much later, I dragged myself out of bed. Dragged some jeans and a sweatshirt jacket on over my pj’s. Dragged myself in for bloods. Sat in the waiting room, with my stupid rollator, head resting on my arms, arms resting on my rollator’s padded handles. My arms hurt. My legs hurt, being shoved under the seat of my rollator, where I had to have it close enough to lean on. Tears rolled down my face.
My nurse was running late. She’s lovely. She took my blood, with the minimum of pin-cushioning (she’s the only nurse out of the 5 there who can successfully cajole blood from my recalcitrant, chemo-screwed veins) and sympathised with me.
I was still in tears on the way out through reception. The equally lovely receptionist intervened with The Tissues. Another receptionist joined in her efforts to comfort me. I just don’t know what’s wrong with me.
I just don’t know what to do with myself.
When I got home, B took one look at me and put me gently back to bed, practically having to carry me upstairs.
“I hate this. I just want to be normal,” I sobbed.
All efforts at staying awake failed. Despite managing to make a couple of comments on here first, the black blanket smothered me again. Again, I woke up to B standing there with food on a tray for me. Again, I felt sick, tearful, in pain, exhausted, I’ve slept more than 12 hours already today. Even the phone ringing didn’t wake me up. I vaguely heard some distant noise, but couldn’t surface. I just couldn’t.
And I just don’t know to do with myself.
This isn’t a flare. Or if it is, it isn’t a normal flare. I feel too ill, too toxic, too exhausted. It’s taken hours to write this. I can normally write faster. I type fast, think fast. My downfall is usually that I have to keep going back and refining, editing, changing things. It isn’t usually that I can’t think what to say, but how best to say it.
But I’m smothered by a black blanket and my brain’s waddling through treacle, so if it’s just a bit rubbish today, please forgive.
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!
I literally don’t remember the last time I woke up feeling any benefit from having slept.
It makes no difference if I sleep for 20 minutes, an hour and a half, 3 hours, 8 hours, 12 hours, or am engulfed by my old friend the 20 hour coma.
It’s always the same result. I wake up feeling run-over, beaten up, and poisoned.
Why do I sleep at all? What’s the point?
It’s an endlessly relentless cycle of exhaustion and pain, sleep, exhaustion and pain. It’s depressing. I see no end to it.
I was hopeful last night. I nodded off early, whilst I was still sitting up in bed watching TV with my headphones on so as not to disturb my beautiful sleeping Ben. Ordinarily, I doze, wake up, rewind the bits of the programme I’ve missed, watch it again, doze off again, wake up, rewind….lather, rinse, repeat.
At this time of year, high summer, I somehow feel compelled to keep watch, stay awake, be alert enough to protect the house, until the sound of bird-song seeps under my headphones and fingers of soft dawn light gently lift the darkness out of our bedroom. Only then will I feel safe enough to turn everything off, move my heat pad off my back-pillow, take my last lot of pain-killers, remove my glasses and tuck down. Fibromyalgia perpetuates anxiety. I don’t feel safe when Ben is asleep. Ben is my protector.
But recently, the exhaustion has been greater than usual. It has closed my eyes when I don’t want to close them. It has enveloped me in unconscious sleep against my will, and instead of dozing for a few minutes at a time throughout the night, I have been waking up sometimes three hours later, head off at an awkward angle, neck cricked to the extent of having to re-position my head painfully with my hands. I feel like a battle-ship’s look-out who has been caught asleep on his watch. I am always heart-in-mouth amazed that no-one and nothing has taken advantage of my gross dereliction of duty, that no punishment ensues.
But if my body insists on sleep, if it’s going to bully me into unconsciousness, then I must work with this, pre-empt the bullying by taking control and making sleep my choice. So I up my anti-anxiety meds, and I prepare for tucked-down, properly horizontal sleep the first time I surface from nodding-off. I take another batch of pain meds, another valium. I slide the heat-pad off my back-pillow and place it on the floor. I turn off the TV and the box. I quietly put the remotes on my bedside drawers. I put my glasses next to the remotes. I tuck down feeling sensible. I am doing my body is telling me to do. I am not fighting the urge to sleep.
I am listening to my body’s needs, if not my mind’s.
And I sleep. I sleep for several uninterrupted hours, which you would think would be a relief, to be out of pain for that long – or at least be consciously unaware of it.
But I guess that’s the thing. I may not be consciously aware of it, but it must be eating away at my subconscious throughout that time. I awake in pain. My back hurts. My fingers and hands hurt, my neck hurts. My hips hurt. I can identify few areas that don’t hurt.
This morning, my head hurts, too. If often does. The migraine is relatively low-grade today, but it needs heading off at the pass before it breaks into a gallop all over my brain, stomping its big blunt hooves into the softness inside my skull. I need Imigran. But what do I take first? My morning doses of steroids, pain-killers and hormones, or my migraine meds? They don’t work well in combination. The mixture makes a sour-faced cocktail, sullenly diminishing the required effects of all.
The Imigran nasal spray? Perhaps my ordinary head-pain steroid nasal spray instead? Or a tablet? Can I take a tablet, or will I have to take my morning pills much later to avoid the conflict? My migraine can’t be that bad, because evidently I am capable of thought.
But if it jumps up, if it’s merely lying in wait so it can later sneak up and smash violently into my head in a blaze of searing pain, it will need an injection.
I can only choose one option.
I have only one life left in this video game of Migraine Wars, and to pick the wrong choice of weapon means a day of Ben encasing my head in ice-packs, of swollen eyes, nose and mouth, of nausea and vomiting, of feeling my head is about to literally explode, and repeatedly losing consciousness, of yet another lost day. What should I do? Which weapon do I defend myself with? What’s my best choice?
I go for the middle option, the mid-power weapon of the tablet, and pray to the universe it will be enough to blast the migraine into oblivion.
Now I must wait at least 20 minutes before I can take my morning pills, including the pain-killers my muscles and bones are pleading for.
20 minutes is a very long time when you’re in pain. 20 seconds is a long time when you’re in pain. But I must also now wait at least an hour before I can take another Imigran tablet, or I run the risk of a serotonin storm. If I have made the wrong choice and needed to have plucked another, more powerful weapon from my available migraine arsenal, I could be in serious trouble, both pain-wise and serotonin storm-wise.
So I must wait. I must hope I’ve made the right choice. And I must wait at least an hour before taking another tablet, and then that’s the maximum allowed in any 24 hour period, so if it only pretends to be dead from two tablets and leaps up in renewed anger at my attempts to obliterate it, I will be up shit creek sans paddle. I must wait through another 60 minutes of potentially increasing, brain-bashing pain before I will know if even stage 1, tablet 1, has worked.
I must also wait out that 20 minutes before I can take my morning meds, and all these different areas and types of pain are currently competing for supremacy.
And, dammit, now my lower gut is cramping, and I must of necessity find my way to the bathroom. Fast. Ben stirs besides me, disturbed, no doubt, by my shiftings and reachings out to my meds drawer, for my bottle of water. I feel nauseous. I reach for the anti-emetics. Ben awakes.
“You ok?” he asks sleepily. Poor Ben. He works impossibly hard to try and take care of us, of me, of our little family of three unbelievably loving yet demanding cats, of our home, our bills, our everything. I hate breaking his sleep. He needs every minute he can get. I worry that my illness is making him ill.
“No,” I admit, reluctantly.
He sees straight through any attempt at denial and I long ago learned it is futile to try. I have a transparent face. – Put me on a stage, or in front of a camera, or any audience of people who don’t care about my illness, and I can deliver a convincing performance of Ok-ness. If they gave BAFTAs and Oscars for “Best Performance Of Ok-ness”, our shelves would be heaving under their weight. I am a consumate actress in this field, as so many of us are.
But in real life, to those close to me, to those few who actually give a damn, I can’t pretend. I am incapable, apparently. So I reluctantly tell him I’m not Ok, that I need his help to get to the bathroom.
Uncomplainingly, he gets out of bed, comes round to my side, and lifts me out. He holds me semi-upright from behind, hands me my stick. We shuffle to the bathroom. We yank my pj bottoms down, and he lowers me on to the toilet. He tells me to call when I’m done, or if I need anything. By unspoken agreement, he leaves the room and closes the door. I am embarrassed by the noises and smells I know are on the way. I am embarrassed by my body. I am betrayed by my body.
I hate that.
I realise I should take my IBS meds, too. So many pills, so little time…..They will have to wait until the Imigran has kicked in, which might be never. Oh well. At least that 20 minutes I have to wait before taking my other meds is being put to use!
Eventually, it stops. The gurgling, the gushing, the violent evacuation of whatever my ridiculous digestive system has taken offence to this time. I call out for Ben. He comes back. We reverse our earlier process and he lowers me back into bed. It’s now gone 7.30am. He hands me my morning pills, and the yoghurt drink I take them with. I take them. Coffee is on the bedside drawers, but I still feel too nauseous to drink it yet. But that’s Ok, because I don’t mind drinking cold black coffee later.
Luckily, the Imigran has kicked in while I was in the bathroom. I’ll be sleepy for the rest of the day now, so in that sense it will still be another unproductively wasteful day, but if it’s zapped the migraine assassin then I’ll take that. Now I have to wait for the steroids and pain-killers to start working, and I can take my anti-spasmodics for my knotted guts a little while after that.
While I’m lying there, contemplating the complexities of multiple symptom management, wondering at those less fortunate than I, those who have to juggle more meds and more conditions than I have learnt to, I get to thinking about mornings, and how they have been horrible for almost as long as I can remember. Once upon a time, I know there was a time when I could leap out of bed, eager to up and at ’em, eager to get to my horse before school, eager to be doing things, learning things, achieving things. But that was what, 4 decades ago? I can’t pin-point exactly when the last time was, more precisely than that. And even then, it was inconsistent. But I coped. I was an achiever. Now my biggest achievement is getting to the bathroom ahead of an accident, or successfully juggling my meds. Sleep leaves me exhausted and in pain.
But if sleep gives me so little discernible benefit, why do I sleep at all? Why am I going through a period when I am sleeping more than I usually do at night? What’s the point? What does my body get out of it?
Why do I feel worse when I wake up than when I went to sleep?
What am I doing wrong?
Short answer is that ibromyalgia prevents us from entering the restorative stage of sleep, the Stage 4 Deep Sleep that everyone else slips easily into night after night. They might be exhausted by their lives when they fall asleep, but they wake up feeling refreshed, better, ready for the day, ready for activity.
I’m so jealous of that ability. I used to have it, and then I lost it. I don’t know what I did to chase it away.
Time asleep is also the longest time we go without our meds, so our symptom relief, if any, is suspended. Which brings me back to my original question:
Why do I sleep at all? What’s the point?
And fat, hot tears of desolation slide out of my eyes.
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.
Welcome to the Morse Universe
#NFR6K ~ Natural Frugal: Raising 6 kids
A 20-something's thoughts on the human experience
A survival guide for those sick and tired of being sick and tired.
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the invisible illness
Vague Meanderings of the Broke and Obscure
Fibromyalgia......the gift that keeps on giving!
The Diary of Rebekah Miller
A Survivor's Philosophy of Life
Living and enjoying life with Fibromyalgia
Living Through It
Growing into Me with Bipolar
A blog full of humorous and poignant observations.