Back To Square One

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Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!

 

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I’ve Had A Little Chat…

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The Library in Tromsø, Norway

This week I had a chat with the wonderful Dr A. I told him about the new symptoms that I am having and said that I was wondering I may have Chronic Fatigue Syndrome (CFS) as well as Fibromyalgia. He agreed that, in the light of the recurrent sore throat and swollen glands, it is likely that I have both conditions as they are often found in the same patient. We discussed the possibility of my taking medication but, as Pregabalin and Gabapentin are both primarily prescribed for pain, I said I would still rather hold them in reserve, for the time being. I know that I can change my mind at any time, which is reassuring. At the moment, I can cope with the pain and discomfort that I am having so it makes sense to hold those two big boys in reserve for when the pain starts firing on all cylinders.

I’m not sure how I feel about the dual diagnosis. On the one hand, I am disappointed to have CFS but, on the other hand, it isn’t a surprise, particularly in view of how troublesome the fatigue is being. Even with all the recent developments in my condition(s), I am still very fortunate. As I said above, I am coping with the pain whereas so many Fibro warriors are often floored by it. As usual, it’s the fatigue that pulls the rug out from under me. This week has been difficult as it seems that anything and everything that I do brings on the fatigue. It’s not just that I am weary and exhausted but that I feel so unwell with it. ‘Snot fair!

 

I Wasn’t Expecting That!

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Scandinavian Architecture in Norway (I think)

I had to see one of the GPs in our health practice, this week. Unusually, it wasn’t the wonderful Dr A but another of the doctors to whom he had referred me for a particular problem. In connection with that problem, she and I talked about fatigue and Fibromyalgia in general. As we were nearing the end of the consultation, I asked her about sore throats. I mentioned that several times recently I had had a very sore throat, although it hadn’t developed beyond the soreness. I said I wondered if it might be to do with the Fibromyalgia as, about 20 years ago, I regularly used to get a sore throat and lose my voice, sometimes for a month or more, due to stress. Dr B said she wasn’t aware of it being a symptom of Fibro but, as Fibro can be reactive to stress, it may well be connected. Nothing more was said about it.

Later in the week, I was reading this page, which I had linked through to from another page on that website.

Now, I don’t tend to read much about Fibromyalgia as, early in my Fibro journey, I found that the information I was reading was depressing me. I read about all sorts of symptoms that I didn’t have (at that stage, the only symptom I realised I had was fatigue – huge great bucketloads of it!) and they weren’t very nice! In fact, I’d go so far as to say that they looked a bit unfriendly, or even downright nasty! I made the decision there and then not to read about Fibro unless I began having a new symptom. If and when that happened, I could just do a quick check that it was, indeed, part of that joyful pakage otherwise known as Fibromyalgia, then not read any more. And that’s what I have done. Mind you, I hadn’t thought to look at whether a sore throat might be connected – that only occurred to me when I was talking with Dr B.

Oops, sorry, I went off at a bit of a tangent there.

As I said, I was reading that page later in the week and I saw that Sore Throat is listed as a symptom of Chronic Fatigue Syndrome (otherwise known as CFS or ME).

Ting-a-ling.

I looked through the list of symptoms again and saw “adrenal stress (low stress tolerance)”.

Definitely ting-a-ling.

My ability to cope with stress has all but disappeared. It had been pretty ropey before the Fibro diagnosis, but now it is very notable by its absence. I may have misconstrued the phrase ‘adrenal stress’ but I have made a note for myself to speak to the wonderful Dr A about it. I’m not sure if being given a diagnosis of CFS/ME would make any difference but, somehow, I think it would feel tidier to know, one way or the other. There would be a place to cross-reference things in my brain’s internal filing system.

I hadn’t expected that I CFS/ME might be involved. I think I had avoided even thinking about any possible connection as it seemed a bit of a cliché and I didn’t, and still don’t, want to be a cliché. I already feel like a bit of one because I am an older woman who “suffers with her nerves” and I certainly don’t want to add to that feeling. However being able to say either “Yes, it is” or “No, it isn’t” would allow me to know where I stand… or, rather, where I collapse in a heap – very elegantly, of course! Ha ha ha.

What Does Pain Feel Like?

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I think this image is probably a pretty good place to start!

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.)

Feet

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Bossy Feet!

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.

Arms

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.

Neck

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!

 

Have You Seen This Website?

I can’t remember how I found the New Life Outlook Fibromyalgia website but I think it is worth a look around if you, or someone you know, has Fibromyalgia.

I was asked by them if I would be interested in writing for them. After some deliberation I agreed to write a sample article about being diagnosed with Fibro. If you are interested, you can find it at:

http://fibromyalgia.newlifeoutlook.com/diagnosed-with-fibromyalgia/

Are You Still Feeling Tired?

I received a telephone call yesterday afternoon enquiring how the appointment with my GP had gone. I gave a quick precis then came The Question…

“Are you still feeling tired?”

The person on the other end of the telephone had been very concerned when the tiredness I had been feeling dragged on after the chest infection had cleared up in September. She had urged me to consult my GP and, when he could give no quick answers, became quite annoyed on my behalf. However, as you nay have already guessed from the question above, she doesn’t understand that the tiredness I feel is a symptom of the Fibromyalgia. I have tried to explain it to her, but without success. She has seen me dozing off in a chair because of it and had to wait for me when I was late because I fell asleep for two hours when I should have been on my way to see her: but still she doesn’t understand. Instead, I am asked The Question in what feels like an accusatory tone.

I think that, sometimes, people don’t hear or don’t understand because they don’t want to, or can’t allow themselves to. That’s OK, it’s their choice, but what about the people on the other side of it? The ones who are being asked The Question?

Wondering (or Worrying) About How I Will Be

I am on a visit with my mother at the moment. I am actually staying with a friend who lives a few miles away.

Embarking on the visit was a scary prospect for several reasons: how would I cope with journey, what if I had an attack of tiredness on the way, would I be able to carry out all the various tasks for her, would she be able to cope with me being exhausted, and so on.

I tried not to be too concerned about the visit beforehand, but having a condition like Fibromyalgia, that seems to be so unpredictable, can make ordinary activities rather worrisome.

Today we were going shopping for household items. My mother wasn’t well so that her care needs were even higher during our shopping expedition than they had been yesterday. This, in itself, is exhausting mentally and physically, but when worries about how well I would hold up during the day are added it becomes even more so.

I find that when I am doing something when I’m feeling OK, I am on edge, worrying about if that “wall” will appear and the exhaustion engulf me. I am assuming (and hoping) that the anticipation of a slump will ease off as I become more used to having Fibro. Yes, I know that I am very lucky not to be having the pain and other symptoms that other sufferers have, but I really am finding that being constantly on edge is mentally exhausting, as well as being a pain in the neck!

I probably sound like a Moaning Minnie (apologies to all the Minnies in the world), but that’s the point of this diary: to be honest about how Fibro affects me.

Actually, it has just occurred to me that life being so hectic at the moment is probably not helping me to come to terms with my diagnosis. Dr. Azeer obviously realised this which would be why he said we would look at and consider other treatments and therapies after Christmas. He really is a great GP!