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!”

:-/

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Fibro Life, Fibro Thoughts, Fibromyalgia

“Normals” Attitudes To Chronic Conditions, AKA Some People Suck.


I was commenting on another blog earlier when it struck me that I had way more to say about this than would be appropriate for a short comment on someone else’s blog.

So, with apologies to accordingtoabi@wordpress.com (don’t ask me, I can’t seem to copy paste her page here, nor my comment! Newbie! Stupidie!) here’s an extended version.

Abi was talking about someone she’d known on and off for several years being very confrontational and accusatory about seeing her recently with her walking stick. He said it was bullshit, as if she was making up her need for it.

I said she should have called her post, “The Stick And The Prick”.

Her post was also about how pain experienced as short lived accident-type trauma by what I call “normals” is invariably subject to huge wodges of sympathy and support for the duration, whilst the sort of long term, endless, relentlessly chronic pain that we get seems to bore people after a while. Ditto the inevitable physical disabilities we increasingly get as a result.

I think it DOES bore people. I think it irritates them, embarrasses them. I also think they run out of things they think they OUGHT to say. It never seems to occur to them that it would be kind of nice to have these old “friends” simply ask us if there’s anything they can do to help, or if we need a hug, or some practical help with the day to day stuff we find very hard to do. Even the offer of an afternoon out would be lovely to have – albeit with my now regular caveat of “If I can, I’d love to!”

After 4 official years of severe fibro (dx in 2011 after more than 30 desperate years of asking the medics for help in unravelling my mystery illness), you’d think everyone around me would have got it by now. But they don’t. I still get, “What’s wrong with you THIS time??” (sigh) For them, pain is not a chronic condition – well, if you’re visibly twisted with rotten osteoarthritis, they might just about understand that THAT is a pain that doesn’t go away with time, but fibro pain rarely shows externally, and if they can’t see it, naturally it doesn’t exist.

A sort of reverse ostrich situation.

Some people suck.

And it doesn’t only apply to pain and disability, either.

When I was diagnosed with breast cancer 8 years ago, the sympathy and support were initially massively touching. My house looked like a florist’s for weeks. My phone never stopped ringing. I had more cards than Christmas.

It lasted as long as it took for my hair to grow back after chemo. My then “partner” (please note the inverted commas) was awesome in his love and support in the beginning – right up until chemo started, when he gladly passed responsibility for me over to the oncology department. He didn’t see what it had to do with him. He didn’t sit with me during chemo sessions. He didn’t even drive me there after the obligatory first one was out of the way. After the extra-huge doses of steroids had kicked my 8 1/2st weight up to 10 1/2st, he was even less connected to me. By 13 1/2 – 14st, we were living separate lives under the same roof.

Some people REALLY suck!

The thing that people don’t seem to get is that breast cancer is one of those cancers that is never fully, conclusively, eradicated. Unlike colon cancer, testicular cancer, and probably some other types, too (and I absolutely am NOT diminishing anyone else’s cancer at all by saying this, it’s a terrifying thing for anyone to go through, and it’s HUGE), breast cancer has a nasty habit of coming back as secondaries. Breast cancer’s favourite 2nd homes are the brain, the bones, the lungs, and the liver. And it’s secondaries that do the majority of the killing. Primaries rarely kill. Secondaries very, very often do. The bitch of secondaries is that by the time you’ve developed identifiable signs and symptoms, it’s usually too far gone for any further treatment to be successful, by which I mean you don’t get to hold on to your life for very long after your secondaries have been discovered.

But if I have the audacity to mention my fears in this regard, (with the notable exception of my gorgeous “replacement” partner – well, I wasn’t going to keep the first one, was I? I’m sick, not stupid! – and my GP) everyone just stares at me as if I’m mad, and/ a raging hypochondriac. I am accused of wallowing, of throwing a pity party, of being deficient in strength of character by this failure to move on. I am told that because I have now passed the magic three year mark, and the five year mark, that OF COURSE it won’t come back!

Tell that to the women I’ve met in support groups who died of secondaries ten years or more after their “all clear”.

“Oh! You can live for YEARS with secondaries!” they say. Yeah….like my friend Tina, who developed bone secondaries and was given a 10-15 year prognosis. She went into a hospice on the Friday night, simply to give her family a weekend care-break, and she died on the Monday morning. She’d only been diagnosed a couple of months earlier. She was supposed to have at least another decade to beat it.

I could give you at least another dozen similar examples, and those would only be the people I’ve known personally through different support groups, or “the treatment environment”, as they call oncology departments and their various off-shoots.

It’s not that I think it’s going to get me every day. I don’t. Some days I don’t think of it at all. And I don’t ever wake up thinking, “It might be today…..”, but the prospect – the threat, I suppose – is just THERE, in the background. It’s like the sky, or the weather. It’s just there. All the time. Whether I’m consciously recognising it or not.

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……….

Fibro Life, Practical Fibro

Depression, Suicidal Tendencies And Cottage Cheese.


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!

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!

Fibro Diary, Fibro Life, Fibro Thoughts

Effing Fibro, AKA The F Word.


I wanted to call this blog ‘The F Word’, but apparently someone beat me to using that title.

One of my closest friends calls me “A posh bird who swears a lot”, which always makes me laugh. For fuck’s sake, I don’t swear that much! When I do, I tend to repeat myself, because my bank of swear-words really isn’t extensive enough to let forth a string of endlessly different expletive deletives, so it will go something like, “Fucking hell, fucking fuck fuck FUCK!” whenever frustration gets the best of me. Hardly original, and hardly the product of a truly dedicated swearer. Or maybe I just lack imagination!

My parents claim to despise swearing, and those who do it (apparently “balls”, “bollocks”, “Christ!” and “shit” don’t count, although “crap” puzzlingly does, which makes me chortle even more) so I have to filter heavily whenever we speak. Ditto Doctors, consultants and other medical professionals, at least until they’ve got to know me a little.

In fact, it’s probably best to keep it un-sweary whenever you meet ANYone new. But sometimes there is something just SO satisfying about saying “fuck!” that I can’t resist. It’s such a meaty, expressive Anglo Saxon word.

There are many, many adjectives applicable to fibro, but “fucking fibro” also has a second meaning. On those rare days when I feel as though I have finally managed to achieve even a minor breakthrough, I can use it as a verb, and tell myself I am fucking fibro, Lol.

Well, it makes ME feel better, anyway!