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”.
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!
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!
Recently I messaged a friend, who also has Fibromyalgia, asking her if she finds that the Fibro pain tends to be symmetrical. The example I used in the message was that if there was a pain in the left arm, did it appear in the right arm, also. I asked because I have been experiencing pain in my left arm but, in case your reaction is like hers, let me assure you that I am not having a heart attack! If the pain signified a heart attack I am certain I would have shuffled off this mortal coil several months ago.
Since the Fibro pain really started to kick in, it has tended to appear in my upper left arm most consistently. It radiates from there, sometimes going from the fingertips of my left hand, through the whole of my left arm, across both shoulders, taking a couple of detours – one up into my neck and the other down into my trunk as far as my lower chest and all the way round my back – then down the right arm to the fingertips of my right hand. Sometimes, it feels as though somenoe is continually prodding me sharply in my left arm. At other times, it is more like having shards of glass stabbing my arm. Or, it might feel like a tight band around a specific part of the upper arm. Then again, when I have a shower, it can feel as though the jets of water are piercing my skin or my skin is being scraped with shards of glass when I use the shower puff to wash my skin. However it feels, I’m pretty sure I’m not having a heart attack!
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.
I think I have mentioned on here before that I think adrenalin may affect how Fibromyalgia acts. I have certainly noticed that I am not affected as much by Fibro when the adrenalin in coursing through my body. That seems to have been the case since Friday, when I last posted on here.
On Friday and yesterday I had a lot of arrangements to make and plans to think about. It’s all to do with some emotionally charged ‘stuff’ that’s going on at the moment. I have been pacing myself: doing a certain amount and then relaxing. There were some things that I had started before the ‘stuff’ cropped up and which I wanted to complete. It wasn’t vital or even particularly necessary that they be finished, but I wanted to finish them. I am really pleased that I did manage to finish most of them. The one thing that I didn’t complete by the end of yesterday has been worked on today and looks as though it will probably be finished within the next day or so. I am so pleased with myself, that I have managed to achieve so much in the midst of the ‘stuff’. As for Fibro, well, it has hardly made an appearance!
Given that my days have been pretty full – using my brain for some things and my hands for others – one could reasonably expect that Fibro would rear its ugly head, except that it hasn’t, really.
The only symptoms that I have had since the start of Friday have been a little pain in my upper right arm on two or three occasions, and Fibro Fingers this morning. Other than that, I have been fine. In fact, this past week has been pretty good. Still, I can’t help feeling that it’s adrenalin that has been responsible for the lack of symptoms since the ‘stuff’ reared its ugly head. Of course, it may be the Amitriptyline working wonders and I rather hope it is as, otherwise, I might be in for a nasty bump when the Fibro kicks in!
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!
I’m not sure whether this period of prolonged fatigue that I am in is due to a Fibro Flare or the change in my medication.
It is now two and half weeks since I began to feel so completely drained of energy. The chest infection that I believe was the main cause has completely cleared and gone away but the fatigue has remained. In fact, it seems to be slightly worse than it was last week, although that may just be my memory of how I was last week.
Little Sis has been here since Friday morning but we have hardly been able to do anything because I have been feeling so ennervated. The most I have been able to manage is to get myself washed and dressed and, after resting for a while, dragging myself out to the car to be driven somewhere to have lunch. Luckily, Little Sis was aware that this was likely to be the case before she embarked on the long haul up the M5 and M6 from Somerset. Actually, I think that she has been enjoying being able to sit here and read without me constantly interrupting her!
As well as the almost constant weariness, I have also noticed that I am suffering dizzy spells more frequently. I’m sure that the dizziness is due to the Fibro rather than migraine, as it has been markedly different. The dizziness appears to be in my eyes rather than elsewhere in my head: more of a disturbance of my vision than my balance. Although, having said that, often it has seemed to affect my balance as well. I am not explaining it well but, in my defence, it is a strange phenomenon to describe in words.
Another effect of the tiredness has been a lack of appetite. We usually eat our main meal in the evenings but, during this flare-up, I have found that by the time the evening comes I don’t want to eat. I think I am too weary to manage the effort required to eat, plus the mere thought of a main meal engenders feelings of nausea. This has meant that I have tended to eat a poor, unbalanced diet. The best I can manage is a little fruit, or a piece of cheese plus assorted snack foods. I suspect that the poor diet and tiredness are, together, creating a vicious circle which needs to be broken – the only trouble is that I don’t have the mental or physical energy to do it.
When you add to all that the other symptoms that I am having life becomes very tedious. My hands and feet are frozen one minute then burning hot the next, pain is coming to my chest and all three areas of my spine, I’m having pain in my upper arms and my knees and I am quite short-tempered. Put simply, I’m not much fun to be around at the moment!
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!”
I can categorically assure you all that my Fibromyalgia has no need of a dentist at the moment. It has been well and truly showing its metaphorical teeth… and they are sharp.
During the reduction of my dose of Gabapentin, I have seen a general increase in tiredness and fatigue, particularly during this past week. I have also been feeling pain in the thoracic region of my back more often, but that does seem to happen when the fatigue is troublesome. At times, I have begun to feel overwhelmed by the lack of energy, although that feeling has been transitory, thank goodness.
I have also had other symptoms appearing: I don’t know whether these are coincidental, or not. I have, for the first time, had discomfort and swelling in my fingers, which has has affected my fine motor skills. I was building some models out of popular building bricks for my grandsons and found that I was struggling to put the smallest pieces together due to the sensations in my fingertips. I did manage to complete the models – well, a Nana mustn’t disappoint her Treasure and Precious, must she? – but at some cost to the comfort of my hands.
The other symptom is one that has reappeared: the feeling of being stabbed repeatedly in my feet. The sensation causes discomfort even when my feet are at rest, but walking is very uncomfortable.
It will be interesting to see how things progress when I begin taking the Amitriptyline, and, also as the dose increases.