My Fibromyalgia Diagnosis – 22 Years of Pain

I talked in my last post the odd dreams I have thanks to Fibromyalgia. After reading this article today, I decided to write a bit more about my experience of having FM, at least from a medical point of view.

When I went to university in 1992, I was a pretty healthy 18-year-old, looking forward to what lay ahead. I threw myself into uni life (and not just the drinking side of it, though there was certainly plenty of that!) and got involved with the student union. I was on the Entertainment Committee, tasked with cooking for the bands that came to play. It was good fun, and most memorably, I got to sit down and eat vegan chilli with Julian Cope (who also “borrowed” the last of my Rizlas). He was a really nice bloke, genuinely friendly. I was also appointed to be Women’s Officer, no small feat in a university that was 75% female. By the end of my first year, I was coordinating a national student campaign, briefing the NUT and the media about our cause. I was also working 16 hours a week in trying to make ends meet. Somewhere in amongst all that, I was just about holding my head above water in my degree too.

Julian Cope ate my cooking and shared my Rizlas!

Julian Cope ate my cooking and shared my Rizlas!

Not much changed in the second year except that things got busier, I was working more hours. Then a stomach bug went round at uni. Everyone I knew went down with it. Although the D&V lasted just two or three days, it left you feeling run down and lethargic for about ten days. So we all got it, and we all bounced back. Except that I didn’t. I just carried on feeling ill, and had incredible pain in my right elbow, which couldn’t be explained. I had no energy, and either couldn’t sleep at all, or could sleep for hours and hours and not feel rested. My GP started doing some tests. I can’t remember how many blood tests I had to have, but there were lots, not least because five vials of blood were lost and they had to be done again. Unfortunately, my veins started to collapse as soon as a needle came anywhere near me and blood tests became incredibly painful. I bruised up and down my arms and they struggled to fill even half a vial. After all that, every test came back clear.

The disease was first identified in the 1990s as a catchall for patients who reported experiencing life-disrupting discomfort but who seemingly had “nothing wrong with them,” pathobiologically speaking. To be diagnosed, a patient must exhibit pain in 11 of the 18 tender points when pressure is applied.

In January 1994 I was sent to see a consultant at the Royal Hospital for Rheumatic Diseases, known locally as The Min (it’s in Bath and used to be called the Mineral Water Hospital and is opposite the Roman Baths). I walked in to my appointment having no idea what to expect. After a quick chat with the doctor he said he wanted to do a test and asked me to stand up. He pressed his thumb into various points on my body – the 18 tender points associated with Fibromyalgia, and made a note of which ones I felt pain in, which was all but two. So much pain, that I came out of the appointment in a wheelchair. And that was it. I had a diagnosis of Fibromyalgia, which I’d never heard of, a leaflet telling me a bit about it and the doctor’s words “There is no cure for Fibromyalgia” ringing in my ears. I was 19.


That was the last time I saw a specialist about my fibromyalgia. Referred back to the GP, I was given amatryptalene in a low dose because the side effects had proved to be useful in treating some of the symptoms of Fibro. It lowered my blood pressure and caused me to black out, so that was crossed off the list. There was nothing else on my GP’s list of possible treatments, except a letter giving me access to the hydrotherapy sessions at the local sports centre. It was a bit like swimming in a giant bath – the training pool was heated to 38°C which is kind to tender joints. It was generally me and a handful of OAPs, but I didn’t care. It was bliss and I went often. There was some grumbling among some of the other users who could still remember when the hydrotherapy sessions were held in the actual heated spa waters of the Roman Baths, just like in Austen’s books. But that had stopped and some weren’t happy. “They never did prove it was the water that killed that girl”, I was told!

Where the hydrotherapy sessions used to take place

I moved from Bath in 1998 and that was the end of my access to hydrotherapy. My new GP sent me to a sports injury clinic for some acupuncture. It worked wonders, ridding me of pain in my legs for a couple of years, but not before I had endured over two months of intense pain and bruising in my legs. (I had 6 sessions, and the pain lasted a couple of weeks after they ended. It’s not normally painful as I understand it, but for me it was agony).

I had acupunture in my left knee

I had acupuncture in my left knee

That was the last treatment I had. In moving around the country, I had a number of doctors and met some of those who don’t know much about Fibro, including the ones who told me I should start cycling (about the worst thing I could do for my knees) and the one who asked why I hadn’t grown out of it yet!

I’ve had the same doctor now for a little over ten years, and he’s a fantastic GP, but he’s told me several times there is nothing he can do for me with regard to the Fibro. Earlier this month, in the worst pain I’ve ever had in 22 years of having this illness, I went back. I saw a trainee, who was very knowledgable about Fibro and gave me a choice of medications to try to work on the pain. Unfortunately, I wasn’t able to see her again and saw someone else this week, who told me to start walking and swimming and seemed surprised when I told her swimming in normal water makes my pain worse, as does walking. Hey ho.

Treatments have progressed very little in the last 25 years and not much more is known about Fibromyalgia, but it seems to be becoming more common. When I was first diagnosed, no-one seemed to have heard of it, but now I know lots of people with it.

To Sleep, Perchance to Dream

As you may or may not know, I have fibromyalgia. I was diagnosed with it some twenty-two years ago, whilst I was at university. I won’t bore you with the details of symptoms, which are numerous and variable; I just want to talk about one of them in this post – the issue of sleep.


Sleep is very important in managing the other symptoms that come with FM, but it has to be quality sleep, restorative sleep. And that can be hard to come by.  FM affects sleep in a number of ways; it can cause insomnia, which is something I am going through again at the moment. On the other hand, it can cause you to sleep for huge amounts of time in one go (I think my current record for this is 22 hours in one go). However, there’s another way that FM messes with sleep and it cancels out those massive sleeps in one fell swoop.

As you may know, there are different phases of sleep. REM sleep is the one during which we dream, and though it might seem that dreams are long, in reality adults spend a maximum of 20% of sleep in the REM phase. Healing, restoration and rest come during the delta phase, known as deep sleep. And here’s the thing. People with FM seem to have alpha brain waves intruding into  delta sleep, which is why, when they are not suffering from insomnia, they can sleep for long periods of time and feel no better or rested than they did before they slept.  One “side effect” of all this messed up sleep is the amount of dreams someone with FM can have.


I’ve spoken to a few people with FM about this, and it’s a common thing – lots of dreams, vivid dreams, bizarre dreams. I always know when I’ve had what I term a “fibro sleep” because I wake up remembering the most bizarre dreams that make no sense whatsoever. They often come back again and again too. I’m experiencing this at the moment.  I’ve got awful insomnia at the moment and am not managing to fall asleep until 3 or 4 in the morning, and getting just 3 or 4 hours of broken sleep before I’m wide wake again. But I’m packing in plenty of weirdness. The current recurring dream goes like this:

I am visiting the office of Barefoot Books (the company I worked with for 6 years, until last month). The offices look a little like their old offices in Bath, but not colourful at all. The office is on the 12th floor of B&Q and can only be reached by climbing a narrow staircase up to the office which is hewn out of the rock in places. When we get there, my husband (who is a computer engineer in “real life”) needs to log on to the computer system but can’t remember how. Tessa (Editor-in-Chief at Barefoot) rolls her eyes at him as she explains again how to log into the system. Whilst they are doing that (in a mini school computer lab attached to the dull office), I have to play pool with Nancy (CEO), but we are playing on a stone table, with gourds instead of balls and the game has been rigged so there is no way to win.

That’s the bit that is always the same. The reasons we are there and the rest of the detail changes. We’ve been chased by some undisclosed enforcement agency through the (typical school) staircases, whilst trying to escape with a baby that they are after. We’ve had sniffer dogs with us (though I’ve no idea what we were looking for) – these bits take place on the way to and from the office, but invariably we end up jumping out of the office window which is no longer 12 floors up.

So, they you go – a little insight into my psyche. This is one of the “fibro dreams” that makes more sense – some of them are so weird I can’t even find the words to describe them! I’d love to know if there’s any meaning behind them or if it’s just a jumble of dreams that I remember due to the FM effect.

Have you had any odd dreams you’d like to share?

Hooker’s Choice

If you’ve arrived at this post hoping to read about ladies of the night, then let me disappoint you now. The only ladies of the night this post touches on are those who sit up all night, crochet hook in hand, thinking “just one more row and then I’ll go to bed”.

No, this post is about the crochet fanatic addict enthusiast and the choice of hook to be used.

There are loads of hooks to be had – different materials, styles, sizes etc and those who get really into crochet probably have a reasonable selection of all of the above. For my part, I have somewhere in the region of forty hooks, ranging from 1.0mm to in steel, aluminium, wood and bamboo. I have more arriving later today. As I laid them out for this picture, I realised that there are several missing. I found eight when we recently cleared out the front room to decorate, but there are clearly more lurking somewhere!

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So, which do you choose? What’s your favourite material when it comes to hooks?

I prefer bamboo. I love the feel of it in my hand, warm to the touch and natural feeling. I don’t like aluminium hooks, though like most people, this is what I started with. The yarn usually moves easily enough over aluminium, but I don’t like the hardness, the way it feels in my hand. So I go for bamboo, in the main. 

When it comes to smaller hooks, 1mm – 2.75mm, the choice is limited – bamboo is no good for these and doesn’t come in hooks smaller than 3mm. These hooks are all steel. I don’t have a lot of choice of material here, so I use a good brand – my steel hooks are all from Crochet Dude.  I won the set I have in a crochet competition I entered in my early crochet days.

Most of my large hooks are bamboo – I have two full sets of 3mm -10mm – one dark and one light, and for some reason, I prefer using the dark ones. I’m not sure it makes much difference, but I like them. So there.

I also bought one Symfonie wooden hook because I loved the colours. I bought it in a 3mm but to be honest I didn’t like using it as much as my bamboo. It’s a moot point now though because the hook broke off the other night when I was crocheting with recycled cotton yarn. I switched to my bamboo 3mm and carried on. Until the next day when the hook broke off this too. The moral of this story? Maybe 3mm is a little too thin to be using wood or bamboo – I’ve broken three in the last year.


To be fair, I don’t think this is the fault of the hooks; when I’m doing freeform I often use the “wrong” size hook for the yarn I’m working with. It’s one of the great things about freeform; breaking many of the “rules”! In this case, the cotton I was using was too big for the hooks, and the wooden and bamboo hooks couldn’t cope with it.

I have an aluminium 3mm so I was able to carry on working, but I didn’t like it. It was harsh on my hand. With fibromyalgia and arthritis in my hand, I need something that feels comfy, hence the new purchase winging its way to me – a set with ergonomically shaped, cushioned handles ranging from 2mm – 6mm.

I can’t wait!  [edit: they arrived whilst I was writing this. I will report back on what they are like]

There are loads of hooks I haven’t tried yet. I’m intrigued by the ones with the little lights at the end of them. I can’t decide if they are pure genius or a complete gimmick. Have you tried them? What did you think?


So a Funny Thing Happened in Asda

and by funny I mean a bit weird and creepy.

I just popped out for a few bits that we needed. As I walking through the store, I noticed a man who was a bit odd-looking. There was nothing you could point at as being odd, but he just stood out a bit. I thought nothing of it, and carried on with my shopping.

Whilst I was looking at the Free From range, trying to find the soy sauce and as-difficult-to-find-as-the-Holy-Grail products we crave, he appeared again. Right next to me. Not overly close, but next to me.

“Alright love?”, he said

“Yes thanks”, I replied quietly, looking up briefly before I carried on looking for my soy sauce.

“Shopping for the family, are you?”, he continued.

I gave a very slight smile, not meeting his eye this time, in a way I hope conveyed a “I don’t want to get into a conversation with you but I am trying not to be rude” vibe.

He reminded me a bit of Mr Strange, one of Hugh Dennis' characters from The Mary Whitehouse Experience. "Milky, milky"

He reminded me a bit of Mr Strange, one of Hugh Dennis’ characters from The Mary Whitehouse Experience. “Milky, milky”

It clearly didn’t work, because he carried on, this time stumbling over his question.

“I’m surprised you’re not … shouldn’t you be …. aren’t you … umm… I expect you’ll be getting your fella’s tea on soon won’t you?”

This time I steadfastly ignored him and turned away slightly. He left. Phew.

I found the soy sauce (the last bottle on the shelf, which had clearly been hiding when I could have done with it waving a banner) and moved on.

I went to get bread. By the time I picked up the first loaf, he had appeared in the isle. I skipped several isles and grabbed a box of tea bags. There he was again.

At this point, I decided that whatever else I had come in for that I hadn’t already picked up was not an immediate need and went to check out. I didn’t see him again.

Maybe he was completely harmless, but it made me feel creeped out. And a little bit vulnerable.


Getting Arty

In my last post I mentioned that I was planning in using a lot of the yarn I was given in the artwork that I have begun making.

I was never arty at school, and my drawing “skills” still leave a lot to be desired, but as I have got older, I have realised that lack of ability in the school subject called “Art” does not necessarily mean a lack of creative ability. I can create, I just can’t draw anything recognisable!

My school report

My school report

I’ve tried lots of different creative styles over the years, from body casting, to clay work (I found that I’m not a natural on the potter’s wheel), henna painting and more. Recently, I have been using crochet to create art.

I began crocheting over five years ago, teaching myself when I was heavily pregnant with Plum. I did the standard new-to-crochet, mum-to-be things – blankets, hats, cardies etc. And for a while that was the kind of thing I stuck to. But then I discovered freeform crochet. And the world changed!

Freeform crochet sort of throws out the rule book when it comes to crochet. Sort of. There are no set patterns, but there are stitches which are used throughout freeform. Beyond that, the world is your oyster really. I like it. It feels a bit like doodling with yarn.

The first I did was made of four sections, each representing one of the seasons. 30


Next I decided to make a tree. It ended up a lot bigger than I originally planned – it’s 2 feet tall!

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I’ve got another on the go at the moment – a goddess picture for my Etsy shop and I just finished this one yesterday. This was a commission for the people who gifted all that yarn to me. Apart from a wee bit of mohair and a teensy bit of cotton used in the hills, the rest of the yarn used in this piece came from what was donated. I hope it will be a permanent reminder for them of their departed mother, who built up this stash over more than forty years!

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I’m also giving weaving a little go, though not on any big, impressive scale and just for my own amusement at the moment!

Yarn Adventures

A couple of months ago, I saw an advert on Preloved which said someone had a large amount of yarn odds and ends that they would like to find a new home for. For free. I immediately answered to say I would love to take it.

We messaged back and forth for a while trying to arrange a suitable time for me to collect and about a week ago, I went to collect it.

I expected a few carrier bags full if I’m honest, but when I got there, there were about ten bin liners full, as well as a couple of boxes which were also full. We sorted through it all together, pulled out some which the lady wanted to keep, condensed some bags and then loaded what I was taking into my car. All six bin liners full!

Since I hadn’t been expecting this much, I hadn’t emptied the car out before I went, so I ended up feeling like I was surrounded by yarn – three on the back seat, amongst the children’s car seats and the huge stack of parcels I had to drop off, two squashed into the boot, on top of half a forest which the kids had collected, and one on the front seat.

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It was wet when I got back home, so it all stayed in the car until the next day when the sun was shining and I could sort out what I actually had. I tipped it all out and sorted through, bagging it in our collection of carrier bags (the bags it came in were old, dusty and in some cases, disintergrating!), sorting by vague colour.

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I suspect it is going to take me an awful long time to get through this lot. It is mainly odds and ends, although there are reasonable amounts of several yarns. However, I don’t intend to make any of it into clothes or accessories – the majority of this will go into the artwork I’ve been making using yarn. More on that later!

A couple of days later, I was also given a huge amount of mohair in some truly amazing colours. I’ve given some of it to a friend, and I have plans for the rest. It’s already been used for a couple of brooches and has gone into a piece of art I’m working on at the moment. 

I hadn’t fully appreciated how difficult this can be to work with, so I can’t imagine I will be using it in huge amounts in any one project!  Here’s the first brooch I made with it:


mohair heart