Breast Cancer, Chronic Illness, Depression, Drug Companues, Exhaustion, Fibro, Fibro Life, Fibro Management, Fibromyalgia, Natural Medicine, Practical Fibro, Western Medicine

Big Pharma, New Lower Blood Test Numbers To Qualify You For More Of Their Drugs Sooner & Type 2 Diabetes, Cholesterol, Vitamin D3.


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!
L. X”

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.

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Chronic Illness, Depression, Fibro Life, Fibrolmyalgia

Endlessly Relentless.


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.

We don’t.

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.

Depression, Fibro Life, Fibro Thoughts

Another D Day. Time For The Cottage Cheese.


Typical.

Last night, I wrote a post about depression. I wasn’t feeling depressed. Today, I wake up not only with the usual pain everywhere from the fibro, but also with the Big D doing its tsunami thing and threatening to swallow me whole.

I HATE feeling depressed. I was trying to explain how much I hate it, tears pouring down my face, to my in-laws on Monday when they popped over for a visit.

“I like it when I’m HAPPY,” I wailed desperately. “I really, really hate this! My default setting is happy! I’m a normally happy person!” Sob sob, bawl bawl.

My mother-in-law just stared at me.

“Are you?” she said, somewhat incredulously.

I suppose, given the circs, that was understandable, but really? Has she forgotten all the times I’ve had everyone pissing themselves laughing at my latest tale of ridiculous things that happen to me because of fibro or breast cancer? Does an episode of tears wash away all memories of laughter generated by the cryer? Apparently so!

“Contrary to today’s appearance, YES!” I retorted.

And dammit, she really should be able to empathise here, because she also suffers from depression. I suspect she has a degree of fibro, because she also has the raging insomnia and disrupted sleep patterns that are common with the F Word. When I was first diagnosed with fibro, the rheumatologist said that in one particular study, they the subjects were deprived of sleep for three days – every time they entered Deep Sleep, which is Stage 4 sleep, the stuff you need to get enough of for your body to make repairs, keep everything well-maintained, and gain the feeling of being re-energised upon waking naturally, they were woken up. They were allowed to stay asleep through the other stages of sleep, it was only the Deep Sleep Stage 4 stuff that was interrupted.

After three days, every single one of those subjects was exhibiting all the recognised symptoms of fibro. The musculoskeletal pain, the exhaustion, the excruciating tender points, and, of course, the depression. So, lack of refreshing sleep, whether fibro related or not, makes everyone feel awful both physically and mentally.

Probably why sleep deprivation was (is?) such a popular and effective method of torture.

Anyway. Lately my depression has been especially rotten. Black. Dark. Oppressive. Miserable. Debilitating. Paralysing. Making me cry a lot, and at the tiniest, smallest most insignificant things. I can be sitting there talking to my lovely, wonderful, amazing, beautiful  man (who absolutely does not deserve to be lumbered with such a miserable cow for a partner, poor sod) about something that I KNOW I am really, honestly not that bothered by, and I’ll be bawling my face off, saying, “Honestly, I know I’m crying, but I’m genuinely not bothered that Corrie has been replaced by football tonight, or that the next door neighbours told you you’d put the wrong bin out, I couldn’t care less. It’s just that I can’t stop cr-cr-cr-cry-iiiiiiiiiiiiiinnnnnnnggggggg.”

I’m SO lucky to have him. He knows from my face, even without the waterworks, when I’m feeling like this, and he will always ask what’s wrong. And sometimes, just like everyone else on this planet, I AM upset by a particular thing. But mostly, it’s the fibro depression, and my response is usually a wailing “I don’t KNOW!” Or “Hormones?” Or “Fucking fibro!”

Whilst I have this awesome ability to be depressed for no logical reason whatsoever, when I AM depressed, it’s like someone’s ripped off my outer layer of skin. I am raw. I feel everything intensely. Any emotional sturdiness is destroyed, gone, kaput. Adverts reduce me to tears, ffs! And forget about watching nature programmes. I cannot watch as the narrator is explaining that the lost leopard cub is going to die from starvation unless he is found by his mother, or that the baby elephant born with a deformed leg is going to be left behind and then eaten by a lion, I just can’t. Even good old Gogglebox let me down recently. I dunno what happened, whether they gave someone else content control for a couple of weeks, but there was a hideous piece about domestic pets being stolen and slaughtered for food somewhere in Asia. They showed an open-sided lorry with bars retaining the contents, and these poor dogs were literally thrown into this space, all on top of each other, all jumbled up, and there was one little dog with his face turned towards the camera, still wagging his tail, looking very bewildered but still trying to please…..it broke my heart. I can’t get the image out of my head. Gogglebox is supposed to be funny. It’s one of our favourite programmes, and usually has us cracking up at the antics and opinions of the families being filmed while they’re watching TV programmes. Thankfully, it’s gone back to its usual more lighthearted format, but those dogs will stay with me forever. I’m starting to cry again now, just writing about it.

But I digress.

So today is clearly a Cottage Cheese Day. Ben, my lovely man, went to Tesco this morning and returned armed with my precious cottage cheese, and I am currently sitting in bed, blogging on my iPad, and working my way through a 300g tub of the stuff. How lucky I am to have such a brilliant partner. He works from home, which often leaves me feeling lonely because it isn’t the sort of work he can easily take a break from during the day and early evening (he works ridiculous hours just so he can take care of us), but today he came upstairs to give me a kiss and sit in bed for a little while with me, just to be a comfort while I’m doing my impression of pathetic. Just because he loves me. And even that makes me cry! Aarrrrgggghhhhhhh!

I was supposed to DO things today, to write a couple of letters, make some phone calls, do some emails, sort out some household bits and bobs, and all I’ve done is sleep, lie in bed, and cry. Yes, I can sleep and cry simultaneously!

What a girl!

What a talent!

Not.

I think it might be time to break out the Rhodiola, a herb with great anti-d effects, and the Dopa Mucuna, another herb. Dopa increases dopamine production, another one of our happy hormones. I’ll write more about them another time, because I’m sailing too close to the winds of self-pity here, and I don’t want to do that.

Right.

Now where’s the rest of that cottage cheese……….