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.

Chronic Illness, Count Your Blessings, Fibro, Fibro Life, Fibromyalgia

Life-Belts And Lead Weights.


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!)

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Lead Weights.

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.

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Life-Belts.

Ben. Love, support, faith in me, understanding, communication, practical help, cuddly bits, sexy bits (blush)

My New Friends Here.

Music.

Writing.

Reading.

My iPad, my iPod.

Movies, TV Dramas, Comedies, Stand Up Comedy, Informative Documentaries, Talent Shows (esp singing, dancing).

Helping Other People.

My Cats.

Sunshine.

Beaches.

Mountains.

Lakes.

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 heatpads.

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.

Chronic Illness, Fibro, Fibro Life, Fibromyalgia Signs And Symptoms

A Spiteful Spate Of Spasms.


For the past couple of days, my lower back has been going into spasm at the drop of a hat. Well, if I’d dropped a hat and had bent awkwardly down to pick it up, I could understand it. But there has been no dropping and picking up of hats that I’m aware of, and even MY memory can’t be that bad!

But, of course, I MUST have done something……this is a definite Payback reaction. What have I done?

Thinking back over the last few days, the only thing I can think of is that I had the audacity to think I could sit in my orthopaedic office chair and write a letter three days ago. They reckon back injuries take a day or two to manifest symptoms of pain. It must be that. It’s the only unusual-for-me thing I’ve done lately.

The spasms are evil. They catch me unawares. I go to move, to adjust my position, and I’m left gasping, my breath gone in a grunt. I am slashed, stabbed, zinged, and zapped, smacked, smashed, gripped and grabbed by these fiercely rigid pains wrapped round my whole lower back and S.I joints. I can’t stand up straight. Literally. I look like the character of Mrs Overalls in Acorn Antiques (Google Victoria Wood, Julie Walters and Acorn Mrs Overalls for an explanation of this if you’re outside the UK). Getting me out of bed and to the loo this morning required B hefting me bodily out of bed and holding me bent double whilst I shuffled awkwardly down the landing, one of my hands clutching and sliding along my thankfully long bannister rail, the other clutching my back in a parody of a pregnant octogenarian.

I can’t get comfortable. Sitting hurts. Lying on my back hurts. Lying on my front is worse. Lying on the side offers no respite. BEING hurts. If I dare to move, I’m doubled up. Even my go-to heat pad isn’t cutting it.

I (ok, WE) decided it would do me good to sit in the sun-drenched garden today. I had to use my stick to get outside –  the big stick, not the single-footed slightly-more-acceptable, semi-elegant black one I usually use in the house, garden and on social occasions. This is the four-footed heavy-duty number, the one that crushes my spirit because it makes me feel like such a failure. Old before my time. Nothing like the all singing, all dancing, nightclubbing, car-booting, d.i.y’ing, yoga-ing, horse-riding, show-jumping, animal-training live wire I once was. No Ninja Warrior competition entry for me this year! B helped lower me onto my sunbed with its enormous and usually comfy cushions.

Ahhh….bliss.

I lasted for precisely twenty minutes before I was forced inside to take more Valium. I had hoped that the 10mg I took last night would be enough to loosen the taut ropes of muscle, but apparently not. I was thrown into juddering, jerking, jolting  spasms just lying there. Reluctantly, I hoiked myself up with my big stick, and ten minutes later I had managed to make it back indoors. Jolt-jerk-judder, jolt-jerk-judder, jolt-jerk-judder……my garden isn’t that big, but progress across a whole four yards was slow.

I couldn’t even collapse on the sofa,  because my back and all round through both hips was restricted by rigid steel bands of spiteful pain. All I could do was sit (also not comfortable), wildly clench my non-existent stomach muscles to take the pressure off my back, and grab more Valium and morphine.

Eventually, with the brand new sunshine (summer is late this year – I’m usually as brown as a nut by at least the end of May) beckoning again, and with morphine taking the edge off, I jolted, jerked and juddered me and my big stick outside again.

Got to the sunbed. Problem. B had helped me onto it earlier, but was now upstairs working. Hmmm. Can’t bend down. Can’t stand upright. I’m somewhere between the two. Daren’t kneel as I have problems getting up once I’ve got down even without this back problem. Can’t twist and turn my way onto it. Can’t twist or turn, period. I am rigid. I feel as flexible as a turtle. Ok. So, what, then? How do I get back on my lovely comfy sunbed and proceed with the ritual sunbathing?

In the end, I had no choice but to use my big stick like a sort of fireman’s pole, grabbing its length with my hands whilst I put one knee then the other onto the bed. Next problem……now I’m on my hands and knees on the sunbed, and have to find a way of lying down. I can’t turn over, I find, so I am forced to push the release lever to let the head-end go down flat, and just gently, oh so gently, spread myself flat, with my head hanging just over the end of the bed to keep the tension off my back.

Valium and morphine kicked in, and kicked me out of consciousness.

Probably just as well.

B came and fetched me about an hour later. Good job he did, because by then I couldn’t have got myself back up again. I seriously don’t know what I’d do without him.

He very kindly spent some of his precious evening time, time I insist he spends relaxing, massaging my poor back. It did the trick. His magic touch persuaded the spiteful fingers of spasm to abate. He pushed them away. I wasn’t half as crippled by the time we went to bed.

Chronic Illness, Fibro, Fibro Life, Invisible Illness

Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Someone Chronically Ill. Part Two.


8.   “You’ve brought this on yourself. You were so determined to be ill that you’ve talked yourself into it.” Yeah……cos I’ve got THAT much control over every one of my involuntary physiological processes…I must be some kind of Indian Guru or something. Where’s my medal? And if I’ve got such an awesome level of control over my health, how come I can’t make myself well again? I wasn’t “determined to be ill,” you moron; I just knew something wasn’t right a long time before any of you did because I live in this body. Do you seriously think I purposely, deliberately screwed up my happy, productive, independent, joyful life? The one I had Before All This? There is no upside to be crippled by some mysterious illness that no-one can find a cure for. Well, maybe one: it strips away shallow friendship, sorts out the real “friends” from the fake. Only trouble is…..you’re my blood family, so what am I supposed to do with that?

9.   “You’re doing it for the attention.” My Mother said this to me once – actually, she’s said it way more than once, as have a lot of other people, family and “friends” alike. The first time she said it, I said in amazement, “What do you think my flat looks like, Mum? Do you think I’ve staged my bed in a downstairs window on a busy public street, where I put my symptoms on show for the benefit of passers-by, possibly selling tickets? Or do you think I live on the first floor, with my bedroom at the back of the building? I see no-one from one week to the next! How is that getting attention? I’m alone!” The majority of attention we get is negative – from Normals, from medics, and all too often from family. No-one wants negative attention.

10.  “How are you?” When a Normal asks one of us this, our heart sinks. Why? Because it’s clear from your uncomfortable, irritated response that you don’t actually want to know how we are. You don’t want to hear us telling you that we collapsed again on Friday, or that we wanted to kill ourselves on Tuesday, or that we had another migraine on Monday, or that our new meds are giving us a whole new bunch of vile side-effects to work out how best to manage. You don’t want to hear how lonely we are, how desperate we feel, how alone we feel. You don’t want to know. And who can blame you? It must be so tedious for you, so boring. Some of you have even stopped us mid-sentence with the cutting “I’m really not up for hearing about this. I don’t understand any of it. Tell me something positive for a change!”  It’s a dagger through our broken hearts. So we learn to reply, “Fine, thanks,” and plaster on a smile that would only convince an idiot. You always seem convinced. If you don’t want to hear how we are, stop asking us!

11.  “What have you been up to lately?” As above, our heart sinks. Nothing, usually, and that is so not what you want to hear, is it? What have we been up to? Lying in bed, too exhausted to get up and dressed. Or lying on the sofa, alternately huddled in fleecy throws because we’re freezing, or baring as much skin as possible with all the windows open whilst we drip with sweat because we’re boiling hot. Attending another endless round of doctor and hospital visits. Throwing up. Crying. Having migraines. Guzzling pain killers. Falling over. Struggling to cope. Wondering why no-one in the whole medical profession seems able to help us. Having to consciously decide whether to use what minuscule amount of energy we have on getting to the bathroom, or getting something to eat. Wondering if it’s ever going to get better. Researching ways of getting well, searching for that one piece of information that will give us the key to the doorway of heath. Trying to find something interesting to tell you so we don’t drive you away with the tedium of our existence.

12.  “You need to do some exercise, instead of rotting in your pit all day.” Haven’t you heard? Chronic Fatigue Syndrome has been renamed  Systemic Exertion Intolerance Disease, or the marginally less unwieldy SEID. Physical exertion makes us worse. Making it to the bathroom is like climbing Everest in a headwind whilst carrying a couple of dead bodies. Movement kills us. We shake. We feel sick. We feel dizzy. We get violently pounding headaches. Our muscles spasm. Our joints ache. Our nerves stab us with fiery blades. It hurts us. It exhausts us. And then we collapse, wondering if this time we really are going to die.

13.  “You look well!” It took me 2 days to make myself look presentable by your standards. I’ve made a huge effort with my hair, clothes and makeup, and I’m rattling with extra meds. I know that later today, or tomorrow, I will be forced back to bed again, probably by tears of pain, or nausea, or a migraine, or exhaustion. If you say this to me when I haven’t been able to clean myself up, I don’t understand what you think you’re seeing. When I look in the mirror, I see someone with empty eyes and a broken soul, someone with sweaty armpits and an incontinence pad strapped in place. I am a shadow of my former vibrant self. I struggle to see even a vestige of the old me. The illness that remains invisible to you is all too visible to us. And that’s not including the monstrous mental misery that enmeshes us on a regular, yet erratic, basis. That’s only looking at the external appearance.

14.  “It’s all in your head.” Well, d’uh, where else would my brain be? In my ankle? But that isn’t what you mean, is it? What you mean is it’s in our imagination, that we just *think* we’re ill. You have no idea how long it took for us to accept that we ARE ill. We fought it tooth and nail. We refused to accept it. We still have days when we’re in denial. Fibro and PTSD brains are stuck in Red Alert, Fight Or Flight mode, and to that extent you’re right. Our brains control everything, every hyper-active response, every inappropriate reaction to external and internal stressors alike. Our brains control our digestion, our inter-cellular communication, our hypersensitive nervous and immune systems, every bodily and mental process you can think of, including sleep. With fibro and PTSD, we are prevented from relaxing enough to reach the deeper levels of sleep, the Stage 4 stuff that allows Normals to wake up refreshed and well. Oh, I’m sorry, I forgot – you aren’t interested in hearing any of this, are you?

15.  “Stop it now. There’s no need to cry.” And there I was, thinking I was actively solving the world’s drought problems……We don’t cry because we think there’s a “need” to, we cry because we can’t help it. We need sympathy and reassurance, not chiding like a naughty child. Sometimes we just need someone to hold us and tell us it’ll be okay, even though we find it hard to believe it will be. When we’re out of hope, it helps us if someone close can be hopeful FOR us.

16.  “I had a friend/ relative with fibro. She got better.” Great! Now give me all the details of how she managed to do that. What’s that? You don’t know? So you’re telling me this why? To make me feel deficient in my efforts to get well? What? To be helpful? That’s about as helpful as telling a starving man that you know where there’s food,  without telling them where!

17.  “Everyone gets tired.” Sure. After they’ve done something. We are tired from the second we wake up. Sometimes we’re MORE exhausted after several hours sleep than we were before! And the pain is so very much worse on waking, possibly because (partly) it’s the longest time we are without pain meds.

18.  “Everyone forgets things!” Brain fog, fibro fog, whatever foggy prefix you want to apply to it, is a lot different from occasional absent-mindedness. It’s trying to claw your way through sludge to a name, a process, a piece of crucial information that seems to have been erased from your brain. It’s forgetting which light switch controls which light. It’s forgetting to eat. It’s forgetting how to eat. It’s having no memory of leaving a pan on the hob, and wondering what that strange smell is. It’s a number of things, and absent-mindedness doesn’t come close.

19.  “I hate to break it to you, but it’s your age.” Gimmee a break! I’ve been hearing that since I was 30. It’s not my age, it’s my illness. Conversely, “You’re too young to be ill!” Hey, guess what? Illness doesn’t care how long you’ve been on the planet. It is indiscriminate. It doesn’t care if you’re old, young, middle-aged or anything in between. It doesn’t care if you’re kind or cruel, good or bad. It doesn’t care if you’re rude or polite. It doesn’t care.

20.  “I think you’ll find that the more you do, the more you’ll be able to do.” I think you’ll find the more I do, the more time I’m forced to take out to recover. Doing more makes us sicker.

21.  “If there was anything REALLY wrong with you, they’d have found it by now.” And yet they haven’t.  Is it possible, do you think, that I simply haven’t found a doctor yet who is familiar with my illness? If you have a worn clutch on your car, an exhaust specialist won’t spot it. We get sent from one specialist to another, have every test known to medical science (or so we’re told), often to no avail. In my case, it took me more than thirty years of begging the medical profession for help before I got a diagnosis of fibro, and when I did, both rheumatologists who diagnosed me independently of each other, in their respective different hospitals, did so within 10 minutes flat. Sometimes, it’s a question of identifying the correct specialty before the cause of our illness can be identified. And sadly, with fibro, there is no cure. There is only “management”.

It is possible that there may well be further parts to this……! X

Fibro, Fibro Life, Fibromyalgia

Flare You Go Again……..And A Note About Positive Thinking.


One of the most difficult aspects of living with fibro can be the persistent recurrence of a “flaring up” of all your symptoms. Everything becomes temporarily much worse, and previously manageable symptoms suddenly become overwhelmingly difficult to cope with. You can be in flare, be having a flare, or be flaring. Flares can last for almost any length of time, ranging from a few hours or a couple of days, right the way through to a few months. It seems to be dependent on how severe your fibro is, how long you’ve had it for, how far you’ve been pushing yourself, and how much time out you can take in order to recover from the flare. If you keep on pushing yourself, you will continue to experience flares. The real kicker is that you often have no idea that a flare is on the way, so they feel like they’ve come out of the blue. The reality is that they are always caused by a stressor of some form, be it mental, physical or emotional. Always.

Fibro Flares are deeply disheartening. As everybody’s experience of fibro is slightly different from person to person, so too are the flares. Some people have IBS as part of their condition, others don’t. The illustration given here might not include all of your symptoms, and it might include some you don’t suffer from. The process, however, is common to all of us, as is the pain, depression, exhaustion and brain fog. We all get those.

Broadly speaking, it goes something like this:

You’ve just begun to learn what your current limitations are and how to accept them. You’ve made peace with the fact that you probably won’t be entering any 10K charity runs in the foreseeable. You’ve learned about pacing, or how to not do too much on those rare occasions when you suddenly have some energy available to use. You might have managed to go out and meet friends for a coffee earlier that day, or something else “normal” that you wouldn’t have given a second thought about doing in your old life. Like popping down the road to the shop(s). Or loading the laundry. Or having a bath/shower. Or getting up and actually managing to put on some clothing that isn’t pyjamas. You’ve even managed, with help, to change the bedlinen. You’re sure that you haven’t pushed yourself too far. On the whole, you’re feeling pretty pleased with yourself. You’re feeling that, finally, you’re starting to get a handle on this thing. That it’s manageable. Not easy, not convenient, but manageable.

So you go to bed, revelling in the feeling of your lovely clean sheets, feeling optimistic. You mentally compile a list of things you’re going to do tomorrow. You’re coping. You tell yourself it isn’t so bad, that there are a million other people who fight much harder battles than the ones you’re fighting. You’re lucky, really. Tomorrow is going to be another good day. You even begin to think that there’s something in this much-vaunted “positive attitude” that everyone bangs endlessly on about. You’re on top of your pain meds for the first time in months, and you’re taking some new supplements that really do seem to be helping. You’ve even had the confidence to arrange another social outing next week, leaving you enough time to rest up in preparation, and you’re looking forward to that immensely. You love meeting up with people. You always have. Things could definitely be worse. You are finding some measure of control, and that in itself helps with your stress levels.

You feel yourself slipping comfortably into sleep, which pleases you even more; ordinarily, you’d be tossing and turning with pain/discomfort, or with restless legs, or with hot sweats, or any of 116 other different obstacles to your rightful entry to the peaceful land of nod. Tomorrow is very definitely going to be a good day. You start to think you might  have turned a corner. Hey, you might even be getting better!

Morning comes.

Apparently, you’ve slept through the night – another rare occurrence that briefly fills you with hope. But then as consciousness kicks in, your first thought is a baffled “What’s wrong with my hands/ neck/ back/ hips/ legs/ feet/ chest/ throat/ eyes/ stomach/ head/ [insert other applicable body part here]?” Or, “Why can’t I move? Why does everything hurt?” Or, “What the hell’s wrong with me NOW?”

It feels like the entire fleet of Eddie Stobart lorries has repeatedly run you over in the night, closely followed by a little man with a very big hammer who must have methodically beaten the crap out of you. You also feel faint, shaky, and quite violently nauseous. Someone has obviously poisoned you whilst you slept – it’s the only explanation. It reminds you of that James Bond film where he’s pretending to be Japanese, and an enemy spy drips poison down a fine string dropped through a hole in the ceiling directly over his bed, trying to get the poison into his mouth. In the movie, it drips onto his pretend wife’s mouth instead, she licks it off her lips in her sleep and dies an agonising yet swift death. (Obviously, none of this has REALLY happened, but your brain is doing weird gymnastics in an effort to provide a logical explanation for these horrible physical sensations.) You briefly think that the Japanese wife’s death might have been preferable to the screaming pain that’s ripping through you this morning.

And why do you feel MORE tired than when you went to sleep last night? You went to bed feeling pleasantly sleepy, you had an unbroken night’s sleep, you slept for a reasonable number of hours, so why do you feel like you spent the night doing an army assault course?

Your brain isn’t working properly. You feel foggy, groggy, soggy. You can’t remember what you’re supposed to do about all these different symptoms. You don’t understand what’s going on. You just can’t think. So you just lie there.

Welcome to a full-blown flare.

At some point, you see the little pot of pills on your bedside drawers, which you or your partner/carer will have filled with your morning meds and set out the night before. This triggers you to take them. It hurts, reaching for the pills. It hurts reaching for the water to wash then down with. You ease yourself painfully back into a semi-recumbent position against your pillows, which feel flat and uncomfortable. Last night they felt full and fluffy. (- What happened to their promised magical “bounce back” properties?) But that’s the least of your concerns today. Today it all comes down to coping with this alarming exacerbation of all your usual symptoms – the very same symptoms you were congratulating yourself on managing so well last night. You might even have developed one or two new ones, just to add to the fun – a rash, a new area of pain, something else that’s changed, broken or dropped off in the night.

You realise that you’re desperate for a pee. Your IBS has also decided to join the party, and as your guts twist and cramp inside you, you realise that you MUST get to the bathroom urgently, or you’re going to poo all over the clean linen you managed to put on the bed yesterday. You realise with despair that it was probably that simple act of changing the bed that triggered this particular flare.

Getting out of bed is hard at the best of times, and in a flare, it’s more than enough to reduce you to tears. You shuffle, bent over, dripping tears on the carpet, to the bathroom. You can’t move quickly. You hope your morning pain-killers kick in soon. You barely make it, and as you collapse onto the toilet seat, you see that you have already soiled your knickers and pyjama bottoms. Tears of pain turn into tears of frustration and humiliation. You feel elderly, like an incontinent resident of an old people’s home. You feel betrayed by your own body. This isn’t your life! How can it be?

Round about now, depression kicks in with a vengeance. In a flare, this is the evil combination of reactive and chemical depression together. Hopelessness smothers you.

Once your guts have finally stopped spewing their contents into the toilet bowl, you heave yourself up and set about sorting yourself out. You sob your way through cleaning yourself up, rinsing your knickers and pyjama bottoms, pulling out one of the incontinence pads that the district nurses made you jump through hoops of of embarrassment to get delivered to you on a regular basis, and a clean pair of Bridget Jones-style Big Knickers to hold it firmly in place. You dig out a clean pair of pyjama bottoms and drag them awkwardly on.

You shuffle miserably, dejectedly, painfully back to bed. You take a double dose of your anti shit-yourself meds and hope it’s stopped. You take two of your anti-spasmodic IBS pills as well. You still feel nauseous, so you also fish out your anti-emetics from your bedside drawers. You lie down, hoping to escape into sleep. The nausea increases, and you lie there shaking, willing that pre-puke liquid that fills your mouth to go away. It’s no good. You’re going to throw up. You reach for the bowl you keep under the bed just in time to chuck up your morning pills, your pain-killers, your anti-emetics, your anti-spasmodics, and your anti-poo pills. You see them, floating by themselves in a sea of greeny-yellow bile.

You rinse your mouth with the water you keep by the bed. You wipe your mouth and hands with the kitchen towel and baby wipes you keep next to the bowl. You can’t face taking the bowl to the bathroom to empty it, so you push it under the bed instead. It will have to wait.

You think of all the things you planned to do today and realise you aren’t going to be able to do any of them. You suddenly understand the meaning of “disabled”. Your ableness has been taken away. You are literally dis-abled. Tears prick the back of your eyelids again.

Mercifully, at that point you fall asleep.

*********************************

Some time later, you are awoken by a persistent noise. You dimly realise it’s the phone. You groggily answer it, squinting at the display and seeing it’s a call from one of your friends. They want to come over and pick you up, take you out and cheer you up. Lovely friend. You try to explain how you’re very grateful but that you’re not going to be ABLE to do that today, much though you’d love to. You thank them profusely, and you mean it. The acrid stench of vomit winds its way from the bowl under the bed up into your nostrils, reminding you that you still need to empty it. The idea, and the smell, makes you feel sick all over again. Because you’ve thrown up all your helper meds, you’re also still in pain, your guts are still cramping, and you’re aware that you’re quite likely to shit yourself again in the next few minutes.

And the lovely friend says,

“You know, I’m sure if you just made a BIT more of an EFFORT, you’d be fine! You can’t let your life be ruled by your illness! I thought you were stronger than that. You need to pull yourself together – you must be feeling sorry for yourself today. A bit more positive thinking, THAT’S what YOU need!”

:-/

Fibro, Fibro Diary, Fibro Life, Fibro Thoughts, Fibromyalgia, FMS, Practical Fibro

The General Plan.


Ok.

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…….

Fibro, Fibromyalgia, FMS, Practical Fibro

Basics.


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.

Muscle pain.

Bone pain.

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.

Neck pain.

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.

Sore throat.

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.

Brain fog.

Depression.

Anxiety.

Panic Attacks.

Insomnia.

Nightmares.

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.

Breathlessness.

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).

Muscle weakness.

Balance issues.

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.

Restless legs.

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!