Time for a touch of nostalgia, everyone. Today’s title is borrowed from this song by The Monkees. They were huge when I was young and impressionable. I used to enjoy hearing their songs and always thought Mike Nesmith was quite dishy. Oh gosh, that makes me feel old! Anyway, as I say, I borrowed part of the song title for this post.
It has been very quiet here, at Bossy Towers. Like much of the UK this week, we have had snow and low temperatures which have encouraged us to stay wrapped up warm and snug indoors – as if we needed any encouragement! The situation has suited me well during the past few days as energy levels have been low. Anything that I have managed to do has been for less than half an hour and, often only a few minutes. It’s been “do a little of this” then “a little of that”. In fact, for much of the time, I haven’t really been doing much at all. Life has certainly changed from when FPR would see me knitting, or sewing, and comment that I always seem to be doing something, always busy. I am hoping those days will return because, at the moment, I can’t even knit for more than a few rows before my oomph is oomphed out. Oh well, at least I can still knit… unless it’s something for me! That’s when the Fibro Fog kicks in, Big Style, but we’ll overlook that for the moment.
Just thought I would mention that Tinnitus is being a real pain at the moment. For the first time that I can remember, the tinnitus in my right ear actually interfered with my ability to hear. Usually I hear everything above the ever-present noise, but once or twice in the last couple of days, I have had real trouble working out if there was any external sound. Pah! Just get lost, tinnitus: I really am not interested in what you are trying to do.
It’s only a very short post, this week. My feet are getting cold and I have just spotted two microjoules of energy which I am going to grab and make full use of!
Here in the UK the National Health Service has a vaccination programme each winter to protect certain vulnerable people from flu. I can’t remember which groups are included – and I’m too lazy to check it, at the moment – but I know that I am one of the people invited to have the flu jab because I have a chronic chest condition. It usually takes me a while to get around to having the jab, but I do always make sure that I take advantage of its availability. I think it is sensible to have vaccinations when they are available. In fact, in 2015 I heard that there was a Shingles vaccine available.
Now, my body is extremely reactive to stress. Over the years, stress has caused me to suffer prolonged periods with no voice – the problem was so bad that I began learning sign language so that I could communicate with my family without having to write everything down. (Have you ever tried losing your temper when you have to express that anger down on paper? T’ain’t easy, I can tell you!) Stress has also caused me to suffer excruciatingly crippling headaches – not migraine but most definitely as bad as migraine – and also to develop Irritable Bowel Syndrome, amongst other things. Oh, yes… and Fibromyalgia.
Anyway, back to the Shingles Vaccine. When I learnt about it I was under a huge and prolonged period of stress. I knew, as did my favourite GP, that I was likely to be susceptible to anything and everything when the stress dissipated, so I asked him if I might be given the Shingles vaccine. He agreed that it would be a good idea but, unfortunately there was no way that it could administered within the NHS as I was outside the qualifying criteria. I decided to pay privately for the vaccine and, even though it cost more than £100, I remain certain that it was a sensible thing for me to do.
As you can see, I am a believer in the use of vaccines and so, this winter, I had the flu vaccine, as usual.
During the past three weeks I have been in the company of some people who have been suffering from the nasty cough/cold/flu lurgy that has been touring the UK. Usually, I would steer well clear of those nasty germies, but it wasn’t quite as easy as usual. Consequently, I have been half-expecting to be struck down with a severe case of Fibro Flu. Cue this week.
On Tuesday I began to feel unwell: very unwell. I had severe pain in the thoracic region of my back and also in my chest, both of which are pretty reliable signs of a chest infection working itself up into a frenzy. I was boiling hot. Then I was freezing cold. Fatigue and tiredness were off the scale. I felt decidedly l-o-u-s-y. My favourite GP likes me to keep antibiotics at home so that I can start taking them as soon as a chest infection starts because, once the infection takes hold, it is an absolute whatsit to get rid of. However, this time, I didn’t start taking the antibiotics. Although I seemed to have almost all of the symptoms, I wasn’t completely convinced that I actually had an infection. I already had an appointment booked with my favourite GP for Wednesday afternoon and decided that I would wait until I saw him and ask him to take a listen to my chest. Wednesday came and in I trotted to see my favourite GP. He checked me out and said that my chest was completely clear. It wasn’t a chest infection! Hmmm. Peculiar…
It turns out that my symptoms were all courtesy of “the gift that keeps on giving” (to quote my friend, Anne). My Fibromyalgia has decided to make me feel so lousy that it feels like flu. Isn’t that fun? You’re right. It’s not.
Fave GP and I discussed Fibro, symptoms and medication and agreed on the same conclusion i.e. there is little point in me taking any of the recognised medications for Fibro as they are all aimed at the pain, which is the least of my problems. Fave GP asked me which symptoms I have and I went blank. I just couldn’t think! Whilst I was trying to reply, I had to pause for a while, after which I told him that dizziness (which had been the reason for the pause) is one of my symptoms. I told him that I have a wide variety of symptoms but little pain, compared to other suffers, for which I am very grateful. Please be sure, fellow Fibro sufferers, that I am truly thankful that the pain I have appears slight in comparison to what seems to be the case for very many people who have Fibromyalgia.
In view of the discussion of symptoms with Fave GP, I have decided to try and add a page to this blog where I can note any symptoms that I have. So, watch this space – or should I say, watch the space next to this space?
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!
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?!?
I have Fibromyalgia and I am extremely lucky. I am extremely lucky because, although I do have Fibromyalgia, I do not suffer excruciating pain unlike so many others who have Fibromyalgia. However, I am not completely lucky: after all, I do have Fibromyalgia. In the main, I am afflicted by tiredness, exhaustion and fatigue; “Fibro fingers” (when I am unable to feel my fingers properly and it is difficult to use them effectively); wildly fluctuating body temperature; extremely cold hands and feet; dizziness and Fibro fog. I must admit that having cold hands and feet is something of a revelation as, in the past, my feet seldom felt cold. Now, however, it’s a very different story. The cold in my extremities makes having a shower difficult and uncomfortable: my hands and feet are burned by the water and yet, when the water hits my body it is barely more than tepid.
I admit that recently most of my symptoms have been barely present, apart from the dratted cold hands and feet. I had been thinking that the lack of symptoms was due to adrenalin coursing through my body because of the stresses that have been around me recently. However, I’m not so sure now.
When I returned from Australia at the end of last week I was pretty much symptom-free. Yes, I was suffering nausea and sickness plus the ever-present foul taste in my mouth, but I was sure all of that was due to side effects of the Amitriptyline. I decided to reduce the dose from the 60mg I had been taking whilst in Australia, to 50mg per day. I hoped that the small reduction would halt the side effects. I was unsure whether that would be the case as originally the nausea had begun when I was taking 70mg but had reappeared when I was on 60mg, but I didn’t want to prejudge.
I duly reduced the dose last Friday. Unfortunately the nausea and other side effects continued so, after five days, I dropped again, to 40mg. Still the side effects have remained.
I had a telephone consultation with Dr. Azeer yesterday during which I told him about the side effects I was having and that I was struggling to eat because of them. I also told him that I was now taking 40mg. We agreed that I need to come off the Amitriptyline entirely and went on to discuss the remaining treatment options. He again mentioned that Pregbalin was really the only drug choice we had. At that point, I asked him whether its efficacy mainly worked for pain or tiredness. He replied that it works mainly on pain. Hmm. So this was where the balancing trick came into play. I had a choice to make:
1. Take Amitriptyline and feel almost constantly nauseous, suffer frequent vomiting and not be able to eat a reasonable diet;
2. Take Pregbalin and have my body become used to it, even before I have severe pain; or,
3. Don’t take any drugs for the Fibromyalgia.
Dr. Azeer and I had a good discussion during which I expressed the fear that if I start taking Pregbalin now, when I have little pain, it may not be effective if or when I suffer the levels of pain that many people with Fibromyalgia have. We agreed that I would not take any drug for the Fibromyalgia, for the time being, and that the decision can be reviewed whenever I feel the need.
Having heard what other Fibro sufferers have to cope with because of their doctors, I appreciate just how fortunate I am to have such an approachable, understanding and empowering GP as Dr. Azeer. I may have drawn the short straw in some things, but I am so lucky in who my GP is.
This post will be slightly different from my recent ones. In fact, it should be brighter and more positive. You will probably have guessed the reason for e change but, in case you haven’t, allow me to enlighten you…
I have just had several fairly good days! It’s great, isn’t it? It has done me a heap of good realising that I am still able to have days when I feel almost like the real me, rather than the Fibro me.
Although the days have been fairly good, it doesn’t mean that I haven’t been having symptoms. Actually, I’ve had quite a few of those pesky things including back pain, loss of sensation in my fingers (when I was hand sewing during a class that a friend and I attended), sore fingers, Fibro fog, pain around my left hip and in my left upper arm, generally aching in much of my body, freezing cold hands and feet, tiredness and fatigue. Oh! And a raging thirst due to the Amitriptyline. However, it has been easily manageable most of the time. I think that as time goes on and more symptoms appear, I am learning to cope with having Fibro because my knowledge and experience of Fibro are growing. Well, you know that they say: “Knowledge is power”. Also, most of the symptoms I am getting, apart from the tiredness and the fatigue, are tolerable as they are not severe and I am very grateful for that.
I think that learning to live with Fibro is hugely important and I am trying to do that. I can recognise when I am going to be assaulted by tiredness and exhaustion by the way in which I start yawning: there is a specific way in which I yawn at those times. Only this morning I was able to recognise the signs and scurry off home before the tiredness hit. Also, when I am becoming over-tired, I begin to suffer pain in the thoracic region of my spine, so I know to take appropriate action.
It is taking me a while to learn to live with Fibro but at least I am heading in the right direction. Mind you, I could do with a crystal ball to tell me when would be the best time, Fibro-wise, to visit my sister in Adelaide. The trip will be challenging for all sorts of reasons and there won’t be anyone around to help me, particularly if I have a Fibro flare while I’m there. Hmmm. Scary stuff!
You find me, today, still languishing in the confines of a Fibro Flare. My memory isn’t very reliable at the moment, but I think this is the first flare that I have suffered since the onset of the condition in August/September last year. As you may imagine, there is an awful lot that I didn’t know about Fibro Flares, and I don’t wish to contemplate how much more I have still to discover. So, what didn’t I know?
I didn’t know that I could be so fatigued that even thinking would take more effort than it was possible to muster. It takes a huge amount of effort to formulate thoughts or ideas, and, as for actually putting them into words…
I didn’t know that I could be so fatigued that I would feel desperate for Peter or A.N. Other to know instinctively what I wanted to say so as to avoid the need for me to run the equivalent of a marathon by trying to put it into words.
I didn’t know that making my mouth and vocal chords work in harmony to convey my meaning could require so much effort that I would be able to actually feel the energy pouring out of me and leaving a metaphorical mess on the floor.
I didn’t know that I would struggle to say a straightforward sentence because my mind couldn’t keep up with ordinary, everyday things happening around me.
I didn’t know that taking something from the back of a shelf in the fridge would leave me on my knees, unable to close the door of the fridge, because I couldn’t move my arm because I was so utterly exhausted.
I didn’t know that, when I did manage to speak, it would rarely be louder than a hoarse whisper. Neither did I know that just three or four words could rob me of breath for more than a minute.
I didn’t realise how much effort is needed to even listen to another person. If someone says more than a few words, or speaks at the wrong speed, I have no hope of keeping up with them and, because my brain is so ‘foggy’ I can’t even guess what they were talking about.
I didn’t realise that being so worn out would make me so crotchety. It is easy to become sorely frustrated when the person I am speaking to hasn’t anticipated exactly what I wanted to say. Don’t these people understand that they are supposed to know what I am too exhausted to be able to even think? No, they don’t understand – why should they?
I didn’t know that I could be burning hot and sweating profusely, whilst my fingers and toes were frozen to the core. Nor did I know that the situation could change so quickly so that my body was desperately cold and my fingers and toes swollen and sore because they had heated up too quickly.
I didn’t know how desperate I would feel because of my complete lack of energy. I used to think that I knew a bit about being tired. Hah! In the words of a character from one of my all-time favourite TV programmes (Hogan’s Heroes): “I know noth-ing!”