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.
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.
Fibro depression is in a class of its own.
The way I see depression, there are two types. There’s normal ‘reactive’ depression, or the natural feelings of sadness that are triggered by an event, a happening, something that would make even well people feel down, and then there’s depression that bears no relationship to anything external because it all comes from inside you. It rises up like a tsunami. It engulfs you. It drowns you. This, for want of a better way of putting it, is chemical depression.
When you have fibro, you are very prone to every normal physiological process being unstable. Everything tends to operate in a constant state of flux, and almost nothing comes under the usual mechanism of homeostasis, which is the human body’s standard way of maintaing stability throughout every system of the body. It’s what causes our blood pressure to rise very slightly in order to combat the sudden effect of gravity when we stand up. It’s what enables us to regulate our body temperature effectively. Homeostasis does a trillion different things, most of which operate in a system where a reaction happens in response to something else.
In the blood pressure example, there are tiny pressure sensors inside each blood vessel that register the change in pressure and blood volume when we stand up, which sends a message to the brain, which then sends a message to the adrenal glands to release a particular hormone that temporarily makes our blood pressure rise slightly by making our heart beat a little bit more strongly. The sensors then tell the brain that everything’s as it should be, and the process is reversed so that our temporarily raised blood pressure returns to normal within seconds.
If this process doesn’t happen in its entirety, we may feel dizzy when we stand up. This is called Postural Hypotension, which just means that our change in posture from lying or sitting to standing up makes our blood pressure suddenly drop. I won’t get into all the ins and outs of this, or other homeostatic mechanisms and feedback loops here yet, because the reason I brought it up is only to illustrate that when the intricate mechanism of homeostasis is upset, things can go wrong. Fibro seems to disrupt normal homeostatic mechanisms (in Postural Hypotension it’s usually down to a failure of the adrenal glands to produce the blood pressure raising hormone) and this includes the mechanisms that healthy and well people have that keep their mood stable and cheerful.
Lucky people, if they did but know it!
Depression can be one of the worst parts of dealing with fibro. One minute you’re fine, you are your usual cheery, happy, laughing self, all twinkly eyes and smiles, and the next you’re this hunched up puddle of misery sitting there with water spurting uncontrollably from your eyes. No twinkle and all sprinkle.
The only previous experience I can compare it to is PMS. If you’ve ever suffered from PMS, you’ll know what I mean. If you haven’t, then you’ll just have to trust my description of an internal tsunami of sadness drowning you.
No amount of trying to pull yourself together, cheering yourself up, thinking positive, or any of the other myriad of cliches than un-depressed people proffer, will help in this situation because it isn’t a matter of attitude and outlook, it’s a matter of chemical imbalance.
Because of the new generation of anti-depressants, the SSRIs (selective serotonin re-uptake inhibitors), most people have heard of serotonin. Serotonin is our natural happy chemical. If we fall short of serotonin, we get depressed. It also does other important stuff, like controlling how much our blood vessels constrict or dilate, and inconsistent serotonin levels not only cause vicious bursts of depression, they can also cause migraines.
For some people, anti-depressants help. I can’t take any of them. Not the new ones, not the old ones, just all of them make me ill. I throw up. I get more migraines, sinusitis, upset stomach, weird twitching, all manner of odd side-effects. Some of them in the past made me gain 2 stone (28 lbs) in a fortnight, because they disrupted my normal appetite control (another feedback mechanism controlled by hormones) and I could NOT stop eating. My every waking thought revolved around food. My first thought when I woke up was “Food! Now!,” and my nose was immediately in the fridge. I couldn’t even wait to get food OUT of the fridge, I would just sit there with the fridge open, ramming cheese, yoghurt, apples, whatever, straight in my greedy gob. One night, I sat in front of the freezer and ate an entire 1.5 litre tub of ice-cream. I was full to bursting (I remember that Monty Python sketch coming to mind at the time….”one more wafer thin mint?”) and really felt that I WAS going to actually explode all over the kitchen floor if I put even one more mouthful of food in, but I absolutely could not stop eating! 2st later, and I dragged myself back to my GP in protest. He took me off the anti-d’s.
We tried others. None worked. All had hideous side-effects. I gave up on anti-d’s. They aren’t for me. They’re even on my ever-growing list of “Cannot tolerate” meds in my medical notes.
And no, I’m not one of these super-smug people who can deal with their depression by virtue of mindfulness, or a particular type of meditation, and I don’t go and commune with nature to “get over it”, either (although sitting on a seaside cliff and watching the sunrise to give me some perspective on my silly little life has worked in the past for reactive depression, it won’t work for chemical depression, and my depression anyway renders me physically incapable of travelling further than the bathroom).
Having found out about serotonin, and then finding that I can’t tolerate SSRIs or any of the other anti-ds, I had no option but to investigate other options, other ways that I could find to boost my serotonin levels as and when I needed to.
Serotonin is at the end of a whole pathway of different substances. It starts with an amino acid called tryptophan. Tryptophan converts, via a conversion enzyme, into 5-HTP, or 5-hydroxy tryptophan. That then converts into serotonin. There’s another, parallel pathway that starts with tryptophan and ends in serotonin, too. If your body is short of B3 (niacin), the body’s priority is to urgently make up the shortfall – apparently, B3 is so critical to human mental health that if we had no B3 at all, we would be psychotic within a fortnight. If you have enough B3, the pathway towards serotonin continues, BUT it needs B6 (pyridoxine) in order to make serotonin.
So, you can see from that explanation that a number of things can go wrong even in the production of enough serotonin to keep us happy and mentally fine. For starters, you need enough tryptophan, B3 and B6.
My fibro goes back to when I was a child, so my depression does, too. At some point in my teens, when one anti-d had made me throw up, get dizzy, and pass out, my then GP put me on B6. At the time, they had me down as suffering from PMS, and it had been recognised that B6 was helpful for PMS. Anyway, I remembered this, years and years later, and when another GP saw the same rotten reactions I was having to standard anti-ds, I discussed it with him and was put back on good old pyridoxine again. It definitely helps. I have to take between 50mg and 100mg a day. If I miss a dose, I feel it that same day.
But a year or so ago, my local NHS rules changed, and in my area at least, you can no longer get it on prescription from your doctor. Crazy, but the new rule stops doctors from prescribing “nutritional products or substances” – I can’t even get a Vitamin A based eye ointment that I find helpful for my damaged dry eyes. I can get the eye ointment without Vit A on prescription, but not the one with. If I lived in the next county, I could – I checked online.
I tried taking tryptophan supplements, but they gave me migraines. I tried the next step along the pathway, which is 5-HTP, in case I wasn’t producing the first conversion enzyme and was therefore getting toxic from tryptophan, but I got the same miserable effect. I already take B3, and I take it to the point that it makes me flush (this is your body’s way of indicating that you’ve supplemented as much as it needs and can use, and for that reason I won’t use the popular non-flushing type because that won’t tell me if I’ve put enough in). I dug around a bit, and found that tryptophan is particularly high in turkey, and cottage cheese. Turns out I can tolerate it in cottage cheese, which is lucky, because I haven’t had enough energy to cook for years now, so raw turkey wouldn’t have been much use to me!
I had one particularly evil year, depression-wise, because not only was I dealing with the usual bouts of chemical depression, I also had a hefty dose of reactive depression, too, because my personal life was in tatters. I became suicidal. I never had myself down as ‘the type’ to feel suicidal – or, at least, not the type who would ever actually try to DO something towards achieving suicide, yet I became that person. It was terrifying. Truly. I trawled the web, desperately searching for a painless, quick way of ending it all, without any risk of only making my lot worse by surviving with damage. A very dark place to be. I went to sleep at night, praying that I wouldn’t wake up. When I woke up, I was even more depressed that I hadn’t died.
I never want to go back to that place.
I got through that time by eating cottage cheese.
I recommend it to anyone suffering from recurrent depression, of whatever type, reactive or chemical. It works for both. You have to eat a standard size (UK) pot of it to make a difference, or at least I had to, and sometimes I ate 3 pots a day. I stocked up on it, choosing the tubs with the very longest use-by date I could find, because mobility/disability issues aside, when I’m depressed, I can’t go to the shops. I can’t go anywhere. I can’t think. I can’t make decisions. I feel paralysed and powerless. So I bought heaps of the stuff to eat straight from the fridge. No prep, no cooking (two other things I can’t do without wiping myself out), just open fridge with spoon in hand, get cottage cheese, sit down and eat it. Bloody marvellous stuff. Choose whichever variety you like – chives, plain, pineapple, it doesn’t matter as long as you can eat it. I never recommend any of the popular “zero fat” food products – cottage cheese is naturally low fat anyway, and I hold the opinion that a) we all need some natural fats, and b) I don’t think it’s ever a good idea to mess around with a food by processing it so that its original nutritional components are altered. I don’t like processed, altered food. So, go for the ordinary stuff, and not the mis-named “healthy, zero fat/fat free” variety. For all I know, the minimal fat content in ordinary cottage cheese is what helps the tryptophan into our systems, and the zero fat variety may not have the same beneficial effect.
I’d be interested to hear from anyone who tries the cottage cheese “treatment”, even if you go for the no fat variety!
So now I’ve managed to work out how to properly categorise and tag my posts, my blog is finally showing up under a search on WordPress for fibro. Hoorah. Consequently, I feel a tiny bit more confident that someone might eventually read a post or two. Or even a line! I was beginning to get so frustrated that I almost threw my new blogging toys out of my pram, but I’m pleased to say I now feel more motivated to continue.
I’ve decided that this blog would be best organised into the following categories:
Practical advice on fibro, including supplements, techniques, things that help or hinder.
Fibro Diary/Thoughts/Life, which will be me sharing my experiences connected with this shitty illness, and will include some (hopefully) witty anecdotes as well as me having a rant on occasions.
Other categories may follow…….
You may have stumbled across this blog because you were looking online for information about fibromyalgia. Perhaps you know someone who has it, or maybe you yourself have been diagnosed with it, or are searching for an explanation of your myriad of signs and symptoms. Either way, I hope this might be of some help to you.
Firstly, it’s important to understand that fibro gives rise to a veritable multitude of separate and sometimes seemingly unrelated symptoms. The following is a short list of just some of the more common problems associated with fibro, and is by no means comprehensively complete. It’s also important to realise that you may or may not get ALL of these symptoms, and you may get others not listed here, too. Having said that, ALL fibro people suffer from unrefreshing sleep, depression, fatigue/exhaustion, brain fog, and the feeling of wading through sticky toffee/ wet concrete/ treacle / water/ take your pick of movement-restricting substances. Diagnosis is usually confirmed by the identification of Tender Points, which are parts of your anatomy where bones, muscles and tendons join up (insertion points) which give rise to the most stunningly unexpected intensity of pain when the specialist gently presses them. It feels like they just stabbed you with a red hot poker, then hammered it in a bit more. Turns out it was just their fingertip pressing lightly.
Anyway! The basic list:
Exhaustion, not explained by exertion.
Waking up as tired as when you went to sleep.
Total lack of energy.
Feeling like you’re wading through treacle/wet concrete, or that your entire body is made of lead.
Joint stiffness and pain.
Chemical intolerances and allergies.
Bad reactions to binders, fillers, additives, preservatives etc used in supplements and prescription meds – even the ‘same’ drugs can cause a bad reaction if manufactured by a different company/in a different factory. There are a ton of meds that I can only tolerate in their original branded form – the generic versions make me violently puke and swell up. Occasionally, a generic won’t have any effect at all – not even managing to achieve the thing it is supposed to do!
Intolerances and or allergies to foods and drinks (I can’t tolerate tap water without being ill, which is ludicrous and annoyingly inconvenient), also other things such as insect bites and stings, dogs, cats, horses, dust, pollen, latex, feathers, etc, etc. Preservatives, additives, e-numbers, colours, etc, are also very common in processed foods and drinks, and it can be those rather than the ‘naked food’ itself that causes a bad reaction/intolerance/allergic response.
Feeling too cold/too hot, apparent inability to regulate own body’s temperature.
Prone to infections, viruses, etc.
Poor circulation, can be severe enough to cause pins and needles in your hand when you’re on the phone, or in the back of your head when you’re in bed or resting your head against a cushion, for example.
Nerve pain and or damage. Manifests as shooting pains in hands, feet, arms, legs, sometimes other parts of you. Is like getting electric shocks, as I remember from badly navigating my way over or under electric fences when I was a teenager in the countryside.
Back pain, sciatica.
Trouble opening mouth fully.
Constipation, diarrhoea, IBS (Irritable Bowel Syndrome).
Fluid retention (oedema) affecting face, hands, legs, feet, body (any or all).
Sinusitis, post nasal drip (which is infected sinus gunk dripping down the back of your nose into your throat, and makes your mouth feel like the bottom of a shit-covered bird-cage). The sinusitis can be so bad that it may be mistaken for a migraine because the pain can be so severe.
Rhinitis (where the delicate mucous membranes inside your nose get swollen and inflamed, and make breathing through your nose very difficult and or uncomfortable). Can be allergic rhinitis, or part of a general inflammatory response caused by a cold or other virus.
Sneezing for no apparent reason.
Sneezing that produces goose-bumps (this is deemed to be an overly sensitive nervous system thing, and I have yet to meet anyone else who experiences this, aside from a handful of other fibro patients).
Headaches, ranging from minor pain to monumentally disabling migraines, complete with vomiting on a scale that rivals the girl in ‘The Exorcist”.
Cluster headaches, which are differentiated from ordinary migraines by the consistent swelling of one or both eyes during the attack, with the affected eye(s) streaming like mad.
Nausea, vomiting, not connected to migraine.
Digestive difficulties, including leaky gut.
Various nutritional deficiencies due to digestive difficulties, caused by low stomach acid and poor levels of digestive enzymes. Also often caused by poor diet resulting from inability to go shopping, make decisions, prepare and cook food, and feed yourself -very common if you’re living alone with no practical support.
Irritability, mood swings.
Dead/numb or tinglng feet, hands, or other parts of you (hands and feet most common), classed as Peripheral Neuropathy.
Low (hypo) thyroid.
Low (hypo) adrenal glands.
Inability to tolerate exercise.
Inability to concentrate.
Absent-mindedness (often put down to age, even when you aren’t even thirty yet!) ranging right up to total forgetfulness.
Inability to remember recent events, or things you’ve said or done (I frequently find lists in my own handwriting that I have no memory of having written).
Inability to process information, loss of understanding how to complete ordinary “automatic” tasks, like boiling a kettle, or NOT trying to open a car door while the car is still moving.
Muscle spasms (aside from the gut-muscle spasms that cause the IBS).
Poor hair, nails, skin (this varies hugely between individuals, with some unaffected whilst others may have fab nails but rubbish skin and hair, or fab skin and hair, but rubbish nails).
Seizing up if you sit or lie down for “too long” (can be as little as 5 minutes, but is worst first thing after waking up). Annoyingly, activity can produce exactly the same effect.
General feeling of illness.
General feeling of physical discomfort.
Acid reflux, heartburn (actually caused by failure of the valve at the top of the stomach/base of the oesophagus to close properly, and NOT by over-production of stomach acid, as is commonly diagnosed).
Feeling pain from pressure on skin/muscles which would not produce pain in a “normal” body (allodynia). Shaking hands, being clapped on the back, being hugged can all cause intense and unexpected pain in the fibro body.
Excessive nervousness, anxiety, restlessness, feelings of dread and worry.
Excessive sleeping, can be 20 hours out of 24 in some cases.
Inability to stay asleep for longer than a couple of hours at a time.
Feeling of “crashing” when you’ve done too much, is very like walking into a brick wall.
Easily overwhemed by even small things/chores/tasks. Physically, going to the bathroom can seem like climbing Mount Everest twice before lunch, in a blizzard, carrying 50 lb sandbags. Mentally/emotionally, answering the phone or opening the mail can leave a fibro person trembling in fear. Major emotional events can virtually paralyse a fibro sufferer.
Inability to cope with stress.
Disproportionate tiredness after any activity – travelling ten minutes to the Dr’s can put you to bed for days, longer journeys put you to bed for longer still.
Exacerbation of all symptoms (a ‘flare’) following any physical, mental, or emotional stress.
Co-existence of recognised auto-immune conditions like Lupus, rheumatoid arthritis, and others, where your own body attacks itself by producing antibodies against perceived invaders/problems.
Inability to ever fully relax – everything is stuck in ‘fight or flight’ survival mode (I often think that fibro is a form of, or very similar to, PTSD, and one fibro theory ties its onset to severe trauma events such as sexual abuse, RTAs, accidents, etc).
Poor blood pressure control – either high or low.
Vulvodynia, or vestibulodynia (painful entrance to the vagina) (obv doesn’t apply to the rare men who are diagnosed with fibro, and I have no idea if there is a male equivalent to this, which could well be called Penodynia, or something, I don’t know! – If you do, then please let me know!)
Tendency to boils, abcesses, cysts.
Polycystic breasts, ovaries.
Whilst some of these look entirely unconnected, the fact is that they are ALL recognised signs and symptoms of fibro. There are others that I’ve probably forgotten, and still more that I’m probably unaware of.
If you think you can add to the list, please let me know in the comments section!
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.