Strange things have been a-happening here at Bossy Towers, this week. Life has taken an unexpected twist. Bossymamma’s toes have been tripping the light fantastic along the road less travelled. Life has been dancing to a different tune. Nothing has been quite the same as usual.
The oracle has been consulted, horoscopes read, clairvoyants sensed and tarot cards dealt, all in an attempt to understand the conundrum that has been “this week”. In fact, at one point, there was talk of an official enquiry as foul play was suspected in some quarters.
As you can tell, it was an extremely serious matter, which was reacted to in a timely and appropriate manner.
I am struggling to find a way to fully explain the events of this week which would adequately convey the implications of the circumstances in which I have found myself. However, I shall certainly try. I will give it my best shot. I only hope that my vocabulary is sufficiently broad to enable me to share every detail of the situation in which I have found myself.
I’ve had a good week!
A bit of fatigue – but that’s neither here, nor there. Very little pain. Fibro feet have been (nearly) fighting fit. A little dizziness, but nothing to get in a spin about.
FPR and I have spent a lovely few hours with family this afternoon. They had their Christmas celebration yesterday so on Christmas Eve it was Boxing Day! A bit of a mixed-up time, eh? Not only that, but I have had a generous early Christmas present.
My friend, Fibro, decided to give me a present consisting of multiple symptoms that I don’t usually have a problem with. I must say, at this point, that none of the individual symptoms has been unbearably awful. However, the arrival of lots of them at once has been a bit anti-social. It has felt overwhelming, at times. I have been feeling pain in places that don’t usually give me any trouble and it has also been making itself at home in the places where it is a familiar face. It has been particularly bad in the thoracic region of my back and up across my neck, shoulders and arms. Fatigue has been playing up for a while but, the last few days it has ramped up the action or, should I say, the lack of action. An example of this is that I have only been able to work a few short rows of knitting, before having to rest – particularly irritating as I am trying to complete a Christmas gift!
Sleep has been less restorative than usual. Up until now, sleeping has revived me, but that doesn’t seem to be working, at the moment.
The Fibro Feet have been working hard causing discomfort, as have the Fibro Fingers. Add to that particular mix, the Restless Legs and you have a lively dance to watch.
With the symptoms I have mentioned, and others, has come a general feeling of unwellness. Bossymamma has not been a happy bunny!
As Anne with an ‘e’ says: “Fibromyalgia: the gift that keeps on giving”.
Occasionally, one can learn (OK, ‘hear’ rather than actually ‘learn’!) something from even the most mindless source. That was what happened to me a couple of days ago. It was something about oxy-acetyline torches and it was quite interesting – to me, anyway. Sadly, I can’t remember exactly what it was but I do remember being amazed at the extremely high temperatures that can be reached.
“Hmm,” you say, “what on earth has that to do with Fibromyalgia?”. Allow me to enlighten you, although, may I say how surprised I am that you haven’t yet worked out the link? It seems pretty straightforward to me!
Allow me to give you a hint…
Have you worked it out, yet?
Do you give up?
OK, I’ll tell you.
For the past few days, my feet have been feeling as though the skin is being burnt to a frazzle by an oxy-acetyline torch, causing it to peel off in huge pieces. The pain in my feet has been very much more severe than previously. It would be easy to say that it was unbearable but, of course, I have borne it. It has certainly been unpleasant. Actually, it wouldn’t be an overstatement to say it has been downright nasty.
It was a shock to me that the pain in my feet was so bad, and so different from what I had experienced previously. I don’t know why I was so surprised but I suppose it was because I had become used to how it felt when I was suffering Fibro Feet and it hadn’t occurred to me that those sensations might change! Pretty dumb, huh?
Hmph! Shame it wasn’t ‘numb’ rather than ‘dumb’, then they wouldn’t have felt so darned sore!
When I was a child I loved the film musical “South Pacific”. Actually, I still quite like it, and, also, Calamity Jane:
“Oh, the Deadwood stage is a-coming on over the hill, deedle-e-di-di diddle-iddly di dee. Twenty three miiii-iiiiillllllessss we’ve covered today, Oh! Whip crackaway, whip crackaway, whip crackaway”.
I liked the songs in South Pacific, as well – most of them, anyway. Having said that, I really didn’t like the corny accent of the male singer of Some Enchanted Evening. Although Rossano Brazzi played the character in the film version, the actual singing was apparently done by Giorgio Tozzi! No matter. Whichever one it was put on a strange accent.
What has all this to do with Fibromyalgia, I hear you ask. Oh, can’t you see the link between the two? Cue a perfect segue… No, can’t think of a perfect one so I’ll just continue with what I was planning to talk about in this post and hope that I remember to make it clear at the end.
I’m pretty sure that every Fibro sufferer (or Fibro warrior, if you prefer) experiences their Fibro differently from everybody else. There is such a range of symptoms, causes and degrees that that must be the case, mustn’t it? I find that some of my symptoms can be triggered by specific things, others seem to appear from nowhere and, yet more, decide to form their own habit. This post is about a symptom that has carved out its own special niche – not that it only uses that niche! Oh no, it still jumps out of the woodwork when it fancies making even more of a nuisance of itself. It’s a very naughty symptom and I would smack its bottom, if I could.
Most evenings, after dinner, I sit relaxing in front of the one-eyed monster, playing with some knitting or sewing. I have noticed that this symptom is very sociable and certainly not very happy when it can’t be near me so, each evening during my relaxathon, out it pops – full of the joys of spring and ready to wreak havoc. (Did I tell you it’s very naughty? I’m sure you can see what I mean!)
So, who is this pesky individual? None other than… The one, the only… Ladies and Gentlemen, please put your hands together to welcome, with its exclusive one-symptom show… The world famous… The symptom everyone is talking about… The master, or mistress, of your destiny… the irritating discomfort of…
Fibro Feet! (*tumultuous cheers and applause echo around the auditorium.)
Yes, just as I am settling down for the evening, the Fibro Feet start Going For Gold. Their knives have been honed to perfection and they have smashed the technique. In fact, Fibro Feet can do their job with their eyes shut. (I have a theory that they remove their eyes and send them on a scouting mission to find another unsuspecting victim as their aim is so accurate!) The feelings I experience include: like walking shards of glass, having someone stabbing them with a narrow blade, soreness, burning and painful itchiness. I haven’t noticed any particular routine regarding the sensations, it’s just the habit of coming to visit when I am sitting in the evenings. It doesn’t happen every evening but it happens more often than not and it does make appearances during the day, rather than being only nocturnal. It’s a very versatile opponent. It’s a shame it’s so effective.
Some Enchanted Evening(s), it doesn’t take centre stage.
In the House of Commons, here in the UK, when the MPs have voted the result may well be that “the Ayes have it”. (‘Aye’ is pronounced ‘I’.) Well, unlike the House of Commons, in the house of Bossymamma it is the Fs that have it: Fibro Fog, Fibro Feet, Fumbling Fibro Fingers, Fatigue and Freezing [cold]. And I’m Fed up with it!
Let’s go through those and explain all the joys of the Fs.
Fibro Fog has been making itself felt over the past few weeks, in subtle ways rather than the full-blown muzzy headedness. I have found that simple things have been the ones that my brain hasn’t dealt with very well: for example, hearing “Monday”, repeating “Monday” but writing down “Wednesday”, or reading an instruction, apparently understanding that instruction, and then doing something completely different! One way in which the Fibro Fog has been particularly irritating is when I am knitting. Usually I can knit happily away making whatever takes my fancy. Hmph. Recently I have lost count of the number of times I have had to unpick my knitting because of silly mistakes that I would normally make only rarely. Very annoying.
Next we have the myriad delights of Fibro Feet. Oh, what would life be without Fibro Feet? For, literally, decades I have had hot feet. Admittedly, I don’t like having hot feet but that’s another matter. Now, however, I often have cold feet which, in itself, is not a problem: I simply put on a pair of socks. That’s fine until Fibro Feet decide to kick in [apologies for the unintended pun]. The internal temperature of my feet rockets, the knives start stabbing every part of my feet, the pain intensifies etc. etc. and I just don’t know what to do with my feet.
Now, Fumbling Fibro Fingers haven’t happened much up until now. The most notable occasion that they decided to play was when I was on at a hand sewing workshop – it was very inconvenient. So, Fumbling Fibro Fingers decided they were lonely and wanted to come for an extended visit. Gee, thanks, boys! Do you have any idea how frustrating it is when your fingers are following a different set of instructions from those your brain are giving them? Not only that, but they decide that not more than two fingers will work at any one time and when the next two join in, they will actually be following a third set of instructions that are in Japanese! I’ll just remind you of my love of knitting, here…
Fatigue. Need I say more?
Freezing? In September? In England? Surely not? Hmph. Surely, YES… I should say that this is possibly (or probably) nothing to do with fibromyalgia, but it’s happening now because I have been another sort of unwell and it’s adding to my fedupness.
I hope that my fedupness will soon be over and life will be more like my normal soon. I expect you are, too, so that my next post is not so grumpy. Fumbling Fibro Fingers crossed!
Wasn’t The Fast Show great? (That’s where I borrowed this title from.) My family and I all loved it. Anyway, I digress.
This week I have been mainly suffering from…
Don’t know what Fibro Feet is or are? Allow me to enlighten you, well, at least as to what Fibro Feet means for me.
It begins with a warm feeling in my feet which increases in intensity until my feet feel as though they are burning inside. The transition can be slow or fast. Surprisingly, if you were to touch my feet (which, by the way, is a very bad idea as I am so ticklish!), they wouldn’t feel any warmer than most people’s. Odd, huh? The next stage is the barely discernible transformation of the burning sensation into a feeling that, mainly the soles of both feet, are being stabbed repeatedly by red hot knives. That can last for five minutes or five hours – there’s just no way of predicting how long it will be. It makes walking painful and unpleasant: try imagining that when each step lands it feels as though the sole of your foot is being pierced all over by red hot, rusty nails.
Fibro Feet doesn’t always make me feel as though my feet are red hot, though. At other times there is little or no feeling of increasing heat in them. What I experience is the sensation of walking on shards of glass, lots of shards of glass, which are cutting my feet to shreds. This sensation is even worse that the hot knives one because, unlike the first one I explained, this one feels just as awful when I am sitting with my feet up, as it does when I am trying to walk. I have to admit that I try to avoid walking when my feet are feeling this way as it hurts so much.
There doesn’t appear to be any way of predicting when Fibro Feet will saunter into my day, nor how long it will hang around, but there’s no mistaking when it’s here.
While I was lying in bed awake this morning, the subject of pain came into my mind – not really surprising as I had been in the process of turning over, which is a painful process. I started thinking about the pain that I feel, the different places it manifests itself and how varied it is in character and ‘feel’.
I thought I would insert an image here to show the trigger points associated with Fibro: enter problem number 1. Everyone with Fibro experiences it differently and, although there are several known trigger points, not everyone has them. None of the images I found showed all of the places where I experience pain. (I’m not saying that the images don’t exist, just that I couldn’t find what I was looking for.)
These are my feet. Fat. Puffy. Ugly. Feet.
In the very early days of my diagnosis I didn’t have any particular fibro-related problems with my feet. I had had hot, swollen feet for many years so, for a while, it was difficult to tell the difference between my pre- and post- diagnosis discomfort. However, that is no longer the case.
Some time ago, I began to feel pains in both feet which I could only explain to people felt as though I was walking on shards of glass, even if I was sitting down – a feeling that was definitely different to anything I had felt pre-diagnosis. Gradually that sensation changed to more of a stabbing pain – feeling as though someone was continually piercing me with a knife in both feet. Sometimes the pain in my feet is so bad that it makes walking nigh on impossible: the pressure involved in actually placing the sole of my foot on a hard surface becomes pretty hard to bear. I try to have my feet elevated when I sit, to ease the discomfort, but when it is particularly bad, it really only eases when I am lying in bed, relaxed.
Oh, this is a fun one! Where do I start? Well… The pain comes in several different ways in various areas of, in particular, my left arm. Sometimes the pain begins in the tips of the fingers of my left hand, goes all the way up through the left arm to my shoulder, all around the thoracic region of my trunk, across my neck, through my right shoulder and all the way down to the tips of the fingers of my right hand. Luckily, that doesn’t happen too often. More usually, the pain is concentrated in my left arm and shoulder, appearing also in my right arm and shoulder if I am feeling particularly tired.
Most of the time, I have pain in my upper left arm and shoulder which feels similar to a pulled muscle. When it becomes more severe, I have difficulty lifting, or even moving, my left arm. When the pain appears in the lower left arm, it has the feel of pain that emanates from a muscle, but seems to be in the wrong place. Those pains are unpleasant, but the worst is when I feel pain on the outside of both upper arms which feels as though I am being squeezed and squashed between two thick metal discs on long rods. I think the reason why this sensation is so horrid is because it feels as though I am being restrained and it leads to me feeling slightly claustrophobic. It also feels weird.
My upper left arm is also sometimes painful when I shower. Occasionally, feeling water splashing on my skin causes pain but, more usually, it seems to be a reaction to the sensation of the shower puff rubbing across the skin. Much as I like using a shower puff, I have invested in a couple of soft baby sponges, which appear to be alleviating the problem.
I touched on this in the previous section. As well as the pain that creeps across from my left arm, pain also develops independently in my neck. It creates a tired feeling in my neck which, in turn, makes my head seem so heavy that it’s as though my neck is unlikely to be able to bear its weight. I think this leads to fatigue taking hold, although it may be that the fatigue is what causes the phenomenon.
Back and Chest
I’ve put these together because, often, pain appears in both simultaneously. This happens, particularly, when I am reaching the point of overdoing things. The location of the pain in the chest is directly opposite where it is in the thoracic region of my spine. The pain doesn’t spread across the area, it remains stationary. In the chest, it manifests as a tightness, similar to the tension that one can feel in an anxiety attack. In my back, the pain is very like that which I feel when I have a chest infection. In fact, this was the first Fibro pain that I experienced and was the initial symptom that led my GP to make the Fibro diagnosis.
As you can see, the pain pops up all over the place, and in several guises. The pain is debilitating to a greater or lesser degree. Sometimes, it appears all over my body, making everything hard to do: sitting, standing, walking, bending. At other times, it is more manageable. However it feels, I try to carry on with my life, to a greater or lesser degree, adapting how I do things. I’m not ready to give in to the pain completely, even if I do groan when it hurts!
Last time I posted on here I mentioned that I was coming off the Amitriptyline and not replacing it with any other medication for the Fibromyalgia. Having gradually reduced the Amitriptyline, I took my final dose just over a week ago. So far, things are going well. OK, I know it’s only been a week but it’s still worth recording how the Fibro has been behaving.
I have been having some of what I call the “side” or “small” symptoms, but, by and large, they are easily manageable. The nausea hasn’t cleared up completely which makes me wonder if it had a different root cause, all along. Alternatively, the cause may have changed during the time I was coming off the Amitriptyline: time will tell. I have had some dizziness, including one very unpleasant bout, but it hasn’t caused any real problems in my day-to-day life. The tinnitus is not as instrusive as it was whilst I was on the Amitriptyline. My internal thermometer is playing silly wotsits, but it’s not a problem – in fact, it’s quite novel to have cold feet! As for the tiredness, it has increased slightly but is not a big issue. I have been keeping strange hours lately as I’ve had to make lots of telephone calls to Australia in the middle of the night! Generally, if I’ve been on the phone a lot during the night, I have a bit of a lie-in in the morning, which seems to be keeping the worst of the tiredness at bay.
What I have noticed, lately, is that I am not doing much. Usually, whenever I sit in my armchair, I do some knitting, crocheting or sewing. However, over the past two or three weeks or so, I have spent an unusual amount of time just sitting doing nothing, or surfing the net. I seem to be happy to live life more slowly, at the moment – and that’s perfectly fine. After several months of extreme stress, now that half of that stress has lifted, it feels ‘safe’ to allow myself to slow down. In fact, I have slowed down to such an extent that I am actually relaxing! I can definitely feel a very welcome difference in the way that I am. Not only that, but I have even been told how well I look, by several people!
Perhaps my ‘baby’ boy was right about the Fibro disappearing, now that the cause has gone?!?
Things have been a bit odd over the past two or three weeks. The Fibromyalgia has been “different”. I was prepared, or as prepared as one can be, for a full-on Fibro Flare, but I wasn’t prepared for “different”. I was taken by surprise.
What do I mean by “different”? Well, the bits and pieces of symptoms that I have had, have behaved differently from how they usually are. For example, today I have been having pain in my legs, but it has felt different. Also, I have had stabbing pains in my hands, as well as my feet – I’ve not experienced those pains in my hands before. The dizziness has also been different from previous occasions. Unfortunately the nausea has been awful. I have a sneaking suspicion that it is due to the Amytriptyline so I have reduced my dose by 10mg – but don’t tell Dr. Azeer because I haven’t told him yet. 🤔 I certainly haven’t had a flare-up during these last three weeks and for that I am extremely grateful. There has been so much to do: telephone calls made and received; appointments with all and sundry, in various locations; information to find; decisions to make; places to go; packing to do; clearing; avoiding nosey gossips. (As for nosey neighbours, here’s a handy tip: ** it’s amazing how useful the phrase “Well, you know…” can be – it answers the enquiry without actually revealing anything!)
At the moment life is less stressful than it has been. In fact, yesterday someone commented that I look really well – and, when I looked in the mirror, I saw that it was right! I DO look well. I look much better than I have for a long time. I’m hoping that things continue like this for a while, so that I have time to really enjoy it. We’ll have to see how that goes, won’t we?
Much has happened since my last post: some rather amusing, some most definitely not. A considerable amount of activity was centred in or around hospital and/or medical staff.
On Wednesday of last week the goal posts were moved. It marked a huge sea-change affecting some of the stress that I have been under for the past two months or so.
Thursday brought forth an unbelievably good blood pressure reading, despite what life was bombarding me with. And then things got worse…
Throughout all the trauma, the Fibromyalgia has been kept at bay by the adrenalin surging through my veins. However, I am very aware that when life calms down I am likely to go into an enormous Fibro Flare, but there is little I can do to prevent it. For the time being, I am trying not to overdo things, but it’s not easy. I have a huge amount to do, much of which has a deadline, but I am trying to remember to rest in between tasks. It is very easy to slip into the mindset of “It’s easier to do it myself” but I am trying not to do that – seldom successfully. I am using various strategies to make things easier. For example, I am working on one thing at a time and then, when that task is complete, I move on to the next task. Working like that seems to reduce the amount of stress I feel.
I am also making copious notes. My brain is a little “Fibro-foggy” so making notes is helping me to keep track of what I am doing, what I have done and what I need to do. This particular aspect is not always as useful as it could be as various people are not hearing what I am telling them, resulting in them acting inappropriately and, consequently, creating more work.
The next thing I am doing is keeping things organised. There is a logic to what I am doing, although others may not think so! Things have been placed where they are for specific reasons so woe betide anyone who moves something that I have put in a particular place!
Space and time are looking as though they will be problematic but I think, if I continue plodding along, that I should be able to keep things under control.
As for the Fibro, I have been having more dizzy spells than I usually do and my sleep pattern is currently very disturbed. Oh yes, and the stabbing pains in my feet are dancing attendance, as is the anxiety!
All things considered, it’s a wonder that I haven’t ended up an absolute wreck, even without the Fibro. I am definitely thankful for small mercies. Long may they continue!