Taking Care Of Oneself, Bossy-Style

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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?!?

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The Radical Option

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Do you ever go “commando”? Or ride bareback? If you do you’ll be able to identify with what I’m about to do…

I went to see Dr. Azeer this morning – oh, and that is a story in itself! Anyway, to get back to the point, I saw him to discuss the side effects of the Amitriptyline that I have been experiencing i.e. nausea. As usual, he asked me a few questions about what has been happening, in order to get a feel for how life is treating me, before moving on to health matters. At that point I explained that I had reduced my dose of Amitriptyline due to the nausea and that, when I put the dose back up, the nausea had returned. We reviewed the medications that I had tried and what the next step could be. He mentioned the possibility of trying Pregabalin. However, I wasn’t keen on taking it. I don’t really know why I was reluctant, I certainly hadn’t had any feelings about it one way or the other prior to going into see him. This was where things got radical! I suggested not taking Pregabalin but, rather, going without any medication for the Fibromyalgia, for a while.

I explained that the Fibro had been behaving quite well recently. I also told him about what my younger son had said concerning the possibility of the Fibro getting better now that the “cause” of it had gone. We agreed that it would be worth me having a period without taking any medication specifically for the Fibro. As I said to him, if the Fibro starts causing problems I can always contact him to ask for some medication.

So, that’s it: I’m going ‘commando’! I’m living with the Fibro without my (drugs) clothes on. Wish me luck!

You Might Say It’s Been Quiet But…

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April Sunrise

There doesn’t seem to have been much happening here lately, does there? Well, actually, that’s completely wrong as a huge amount has been happening. So much, in fact, that Fibromyalgia hasn’t really had much of a look in. That doesn’t mean that it hasn’t been making itself felt – it has – but, rather, that I haven’t really had much of a chance to think about it, except when it decides to bare its teeth. Even then, I have tended to just sort of acknowledge that it is still around and then dismiss it to the back of my mind.

The symptoms I have been having are the ones that I tend to think of as the “side” symptoms, or “small” symptoms. By that I mean that they are inconvenient, uncomfortable and unpleasant, but they don’t exactly stop me from doing things. However, again, I think that adrenalin has had an enormous part to play in this. Some of the stresses of the past three months increased considerably recently which meant that I had to focus on certain things.

Luckily the dizziness and nausea didn’t prevent me from doing everything that needed to be done. They were certainly a nuisance and felt rather nasty – particularly the nausea – but, in order to get everything done, I would do some things, rest, do some more, rest again and so on. It was handy that the nausea tended to hit me during the evenings or nights, so it didn’t interfere too much with what I was doing. Phew!

Last week, the adrenalin wasn’t coursing around my body quite so vigorously. Consequently I felt drained. It wasn’t fatigue in the way that I have had it previously with the Fibro. Rather, it was an empty, lacklustre sort of feeling. I didn’t try to fight it as I knew that I needed to take care of myself. I have been running “on empty” for quite some time so was in dire need of some “down time”, so I simply took things easy last week.

Because of the reappearance of the nausea, I decided to reduce my dose of Amitriptyline last week. By the middle of last week I felt brighter so I increased the dose back to its previous level… Bad move. The nausea returned almost as soon as I took that higher dose! Accordingky, I have made an appointment to see my GP to discuss where we go from here. I really don’t want to continue taking the Amitriptyline: as well as causing nausea, it also puts me off eating savoury foods. In addition, I think it may be to blame for the increase in intensity of my tinnitus, which has been well and truly making itself felt. I don’t remember ever having suffered tinnitus at these levels previously.

Anyway, I am due to see Dr. Azeer early (too early!) on Wednesday morning so that we may discuss my medication. Keep your eyes peeled for an update from me, after that appointment.

Onward And Upward.

A very special gateway...
A very special gateway…

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?

All Bets Are Off

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I spoke too soon. I should have just kept quiet, shouldn’t I? Why did I tempt fate?

Although I don’t think I had mentioned it on here, when speaking to friends, if they asked me how things were going, I was able to tell them that the biggest stresses in my life had eased a bit in the last few days. Huh! That didn’t last long so “all bets are off”!

Yesterday morning I decided to have my breakfast quite soon after getting up: I was hungry as I hadn’t eaten much on Saturday. Breakfast consisted on two slices of toast so it wasn’t exactly huge. A while later, I was hammered by fatigue, but not just fatigue: it was accompanied by overwhelming nausea. I felt very, very unwell. I was torn between lying down to sleep or ‘dashing’ (yeah, right!) to the bathroom. The urge to sleep won.

Now, nausea is a difficult one as there are several possible causes:
Fibromyalgia,
Gastric bug, or
Amitriptyline.

As well as the nausea, the rest of my digestive system felt a bit dodgy. It didn’t feel the way it normally would if I had a bug, but it certainly didn’t feel good. So, given the evidence, it seemed reasonable to assume that I had picked up a bug. That meant that I had to cancel a proposed visit from my son and his family – really disappointing.

Eventually, as the day wore on, I started to feel better, although far from good, making me realise that it wasn’t a bug that had caused the nausea. Oh well, probably the Fibro, then. Normal service resumed and, as that happened, all those ‘lovely’ stresses began to reappear, beginning with my mother. Those mother-related problems built up and up, causing my stress level to similarly increase, and now my sister’s condition is becoming more worrisome as well.

Do you know what? Sometimes, just sometimes, life stinks!

There is one good thing about Fibro, though. Yes, there really is – for me, anyway. It gives me cold feet! Yes, I know – I’m weird. But, for years and years and years I have suffererd from hot feet, so for my feet to be cold is sheer bliss!

Yesterday, Today, Tomorrow?

Hyde Park, Sydney
Hyde Park, Sydney

It’s a while since I posted anything here, isn’t it? The reason for radio silence is that, with regard to the Fibromyalgia, things have been uneventful. I have had tiredness and fatigue, but not to any extreme. I have also had some mild pain, which went as quickly as it appeared, and other bits and pieces of symptoms which are not worth mentioning. However, the tinnitus continues to intrude and, at times, can feel unbearable.

My main difficulties recently have been stress-related: anxiety and depression (A & D). Although I am aware that Fibro can cause A & D, I have suffered from both for very much longer than I have had Fibro. Yes, I know lots of people have Fibro for a very long time before it is diagnosed, but Dr. Azeer recognised mine for what it was, or is, within a few weeks of it appearing. Consequently I view A & D separately from the Fibro. Anyway, the A & D have been playing up because my stress levels have been high. I am hoping that, now I’m feeling less stressed, the A & D will ease. In the meantime, Dr. Azeer has suggested I take regular doses of my emergency medicine to help me through. Whilst I haven’t been doing so, I have been taking it more than I was before I saw him this week.

During my appointment with Dr. Azeer, we discussed how well the amitriptyline seems to be controlling my symptoms. We also discussed the well-known effects of stress on Fibro i.e. Fibro Flares. We agreed that, with everything that’s going on, I could be susceptible. However, I told him that I do not intend to spend my life worrying about what Fibro might do to me: I will deal with things as and when they arise. I refuse to use all my energy simply counting spoons.

(By the way, he had never heard of the Spoon Theory.)

More About Stress And Fibromyalgia

Winny and Luna: my "granddogs"!
Winny and Luna: my “granddogs”!

Well, it has been quite a stressful week. It has also been a physically tiring week.

All things considered, the Fibromyalgia has behaved pretty well this week. Admittedly fatigue clobbered me as I was walking from the hospital car park to the ward where my mother was an in-patient, and its effects were still present the following morning, but things could have been so much worse.

The main symptoms I have had this week are tiredness and tinnitus. The tinnitus continues to intrude more than usual, making it feel particularly unpleasant. As for the tiredness, it hasn’t been as debilitating as I have known it to be at other times, and for that I am thankful. I have also had Fibro Fog at times this week. It hasn’t been mind-numbingly severe, but there have been quite a few occasions when I haven’t been able to take in what someone has said to me. Usually, being told a second time has been enough for me to absorb what was being said, thank goodness. I need to be near the top of my game, at the moment, if possible. There are decisions to be made concerning my mother and I am the one who is being asked to make them.

With so many things going on, I know that I need to take jolly good care of myself in order to have a fighting chance of coping with the mental and physical challenges. To this end, for the time being my emphasis will be on what I need to do to help me cope. I am working on a craft project for a swap that is taking place during the coming week. It could feel like a lot of pressure, but it doesn’t. I have made excellent progress and am sure that it will be finished in time for me to meet the deadline. It helps that I am enjoying making it, so it’s a bit of a stress-buster. There are also a couple of family events in my diary for this week. I have decided, as firmly as I realistically can, that I shall fulfil those. Anything else in my diary may well be ignored unless or until I have enough mental or physical energy to cope with them.

With so much going on, my low dose of Amitriptyline seems to be working extremely well. There have been a couple of times during the past week when I have considered using my standby medication, although I haven’t actually done so. If life and Fibromyalgia continue along these lines, I think I should be able to cope.

Watch this space!

Stress And Fibromyalgia

Singapore, May 2015
Singapore, May 2015

I think most people who have Fibromyalgia would agree that it reacts badly to stress. My GP and I are both pretty certain what the catalyst was for my Fibro – and it was a prolonged and very stressful situation.

I don’t cope well with stress. In years gone by I could cope with it pretty well but now, as I tell people, I have run out of ‘cope’. If I encounter a stressful situation, my stress levels shoot right up, way off the scale. My reaction is disproportionate to the amount of stress that is happening and, of course, now I have the additional element of Fibromyalgia and all that goes with it. Mixing stress and Fibro is best avoided, if possible. Certainly, for me, stress can trigger a Fibro Flare, which, I think, is what has happened to me in the last few days.

I have been in the midst of lots of nasty stress-inducing events over the past couple of weeks and I think it is now taking its toll. My Fibro, which has been very well behaved for about three months, has kicked into overdrive. My tinnitus has worsened considerably and, at times, interferes with my ability to hear clearly and to distinguish between sounds that are solely inside my head and external ones. It’s very disconcerting when one is listening to music, only to have another, entirely different tune playing in one’s ears simultaneously. At times I can become quite distressed by the effects of the tinnitus.

Tiredness and fatigue have been a feature of this week. However, they are both manifesting differently from previously. That may be due to the effect of the Amitriptyline, although, of course, that may have nothing to do with it. Up until this last week, the tiredness and fatigue have been pretty straightforward: I’m tired so I fall asleep, I’m fatigued so I rest. It hasn’t been quite like that recently. The tiredness hasn’t made me sleep and the fatigue seems to be as much brain exhaustion as physical exhaustion. Usually, when the fatigue hits me, I will pick up my iPad rather than doing nothing, or I will watch something mindless on TV, whereas this last few days, I don’t even do that! All I can manage is to sit and just ‘be’. My ‘oomph’ has been missing. Actually, I am finding it hard to find an effective way to explain this changed phenomenon.

Worst of all, though, is the onset of stiffness, together with an aching sort of pain in lots of different areas of my body. My limbs and, indeed, my entire body, feel leaden. The aching is similar to the muscle ache that can be experienced during and after a bout of flu. The stiffness is there whenever I move: I look like a decrepit old fogey, shuffling along. Not the best look I’ve ever had!

Despite the stiffness and pain, I am pushing myself to do things. I don’t want to simply sit and vegetate, although that would be really easy at the moment. Only the other day Peter mentioned that I don’t seem to sit and do nothing very often. When I am seated, I can usually be found knitting or sewing, or some such and I intend to continue doing so.

Peeping Round The Corner

Singaporean architecture
Singaporean architecture

The fact that I haven’t posted for a while is no bad thing. The gap is due to me going out and about and doing things… and definitely not counting spoons!

Oh my! It has been a great feeling, so liberating.

The last few days haven’t been quite so wonderful. I hurt my back last week and have been struggling to cope with the pain and restricted movement. I have also had bouts of tiredness: not the all-encompassing exhaustion that I was having a while ago, thank goodness, but more the sort of tiredness that just needs sleep to sort it out. It has been a bit awkward, but certainly not overwhelming. Although the last couple of days have been worse than last week, I am hopeful that the Amitriptyline will continue to keep the symptoms of my Fibromyalgia at bay. The Amitriptyline will have its hands full, one way or another, but I have decided that my cup is half full this week, rather than half empty: Optimism Rules!

Shall I Go Up… Or Down?

Dandelion fountain in the King's Cross area of Sydney
Dandelion fountain in the King’s Cross area of Sydney

In my last post I talked about the medication transition process, including how long the whole thing was taking. Since then, a new twist has appeared in that particular road. Would you believe that my Amitriptyline dose has increased? I know. Pretty unbelievable.

Even before my last post, I had noticed that my mood was dipping. Having suffered several major depressive episodes, I was lucky enough to be able to recognise what was happening. By that, I do not mean that if someone has been depressed before they are able to tell when it is happening to them again, but, rather, that I saw what was happening and somehow my mind managed to realise the risks involved – usually it doesn’t realise and so off I go down that slippery slope.

As I say, I recognised the risk. I had also noticed that various Fibromyalgia symptoms were beginning to crop up, albeit mildly. I tried to arrange a telephone consultation with Dr. Azeer but it wasn’t possible. I had wanted to discuss my thoughts that the low mood and the appearance of the Fibro symptoms were linked to the decrease in my Amitriptyline dose. As I couldn’t speak to Dr. Azeer and the weekend would occur before I managed to speak to him, I did something I wouldn’t normally do: I increased the Amitriptyline. My dose had dropped to 10mg the previous day but I decided that it would be a good idea to put it back up to 20mg. My reasoning was that it would be a while before I could be put onto another drug and for it to start being effective, so I might have more success with what I was already on. ***

I saw Dr. Azeer on Monday of this week to discuss how things were going and to tell him that I had upped the amount of Amitriptyline I was taking. We talked about the pros and cons of continuing with the Amitriptyline and of going back to taking Citalopram for the depression. For the time being, I shall continue on Amitriptyline, albeit on a lower than ideal dose, and we will review the situation in four or five weeks.

*** I do not advocate changing the dose of any medication one has been prescribed: always seek professional medical advice.