Category Archives: Fibromyalgia

I’m taking on a challenge, 1 step at a time!

Some people, more than others, constantly set themselves challenges…there may be no reason for this, other than, “just to see if I can”! For me, it’s been running. I started running as a teenager and have done it ever since. At uni, I was not up late at night partying, but when suffering from insomnia I would go for late-night runs to clear my head or just for something to do! I’ve enjoyed many-a 10k race, tried a multi-terrain type thing that was a giggle and done a couple of half marathons.

For the last few years I’ve found running harder and harder. It’s never easy to go for a run when it’s cold or raining but even in the good weather my body has complained, my hips ached, I’d get sharp pains in my ankles, my head throbbed no matter how hydrated I was and at times it feels as though ever cell in my body was crying to stop. Instead of the exhilaration I used to experience, when returning from a run I’d just feel exhausted. My brain was willing but my body was not. I’ve had breaks, thinking I just needed to rest for a bit but every time I went back to it, I just couldn’t get going.

Since I was a teen I’ve dreamt of running a marathon, would I have to give up on running before I’d realised my dream?

Last year, many of you will know, I was finally diagnosed with fibromyalgia. This is a chronic pain and fatigue disorder that I will need to manage for the rest of my life. Good news, a key part of management is exercise! Bad news, “grading” and “pacing” are not words I’m used to when it comes to running! Connected, or unrelated I’ve also had a lot of other medical problems recently that have put spanners in the works BUT… I have had to learn…

Grading – This involves starting at a very low manageable level of exercise, i.e. 5 minutes of walking per day for a week or 2 (depending on residual fitness). The idea is then to build up very slowly, 1-2 minutes at a time and this is then maintained for a period of time. Gradually other exercises can be added in (of particular value in fibro are things like warm water swimming or yoga).

Pacing – Pacing involves doing the same amount of activity each day, no matter how you’re feeling. The hard bit for me is that when I’m feeling good I want to run and run, which (with fibro) means I’ll pay the price within hours. Even just running a bit further than planned, my joints and muscles ache and the fatigue feel unmanageable. On bad days it’s easy to feel that exercise just isn’t possible but studies have shown that even though symptoms may increase, if appropriate limits are set, it is possible to repeat the performance from the previous day.

I am not someone to give up without a massive fight!

I was referred to a specialist clinic and I went with my long list of questions… at the top? “Will I ever be able to run a marathon?” To be honest, the physiotherapist was not forthcoming with a promising answer but she could see I was enthusiastic, wasn’t going to give up without a fight and she didn’t want to put a dampener on things so she suggested 2 years may be a time scale I could work to.

So, with grading and pacing in mind, October 2018 in my goal.

In Novemeber 2016 my GP referred me to the gym. I started walking for 5 minutes on the treadmill and using the cross trainer and resistance machines to improve my fitness without putting strain on my joints. It was really hard making all the effort to go to the gym just for 10-15 minutes exercise but I had to keep my eyes on the goal. Gradually I added in 2 minutes jogging, increasing it bit by bit, listening to my body and working within my limits. Each increase, my instincts would say “push yourself”, I then have to be strict with myself and make the increase smaller than I wanted – literally 1 minute or 0.2km/h at a time. It’s been really hard.

Pacing has been a tricky one, I’ve hit and broken through “the wall” many times as a relatively fit and healthy individual. I have fallen into the trap of thinking that was all I needed to do with fibro. Unfortunately, after the wall, there’s a 20 inch thick concrete block, then a steep mountain crag, if you do manage to push yourself through all those, there is then a crevasse… So, even when I’ve wanted to do more, if my plan says to repeat the previous day, that is what I do.

So, working carefully, the treadmill and cross trainer have got me to the point of being able to jog for 30 mins. I registered with Parkrun, a free weekly 5k run organised across the world.

Joining the 500 other runners I felt that excitement/nervousness I’d experienced previously at much bigger races and it felt good! I promised my husband I would “plod” round. I was drawn along with the crowd but I was determined not to be driven by striving for a PB or specific time. I must admit when I received my time by email I was quite excited… That is not the point, the point is, I did it, I jogged/ran the whole thing and I really enjoyed it! Yes I ached afterwards but that’s not the end of the world, I did all my usual warming up and cooling down and I can safely say I have not felt any unmanageable adverse affects!

Fibro aside, I’m really hoping none of my other health problems get in the way! My next goals will involve running further but increasing it very slowly. I’ll keep you posted.

I’d love to hear if anyone else has set themselves any goal or challenge, fighting against the odds!



Should I be glad my illness is invisible?

I have read a lot of blogs and articles with people outraged that people have no understanding about invisible illnesses. As a mental health blogger it’s easy for me to climb on the bandwagon but as usual I like to ponder things from a different angle. Mental illness by no means has the monopoly, most cancers, diabetes and most illnesses involving internal organs are on the list of invisible illness.


Someone came to me the other day and told me about being jeered at in the street. He was confused about why but it made him angry and upset. The gentleman in question has a learning disability and the likelihood is that the way he was standing/walking/looking may have looked out of place/unusual, he is unaware that he looks different. Why would someone jeer at someone with an obvious disability? It’s plain cruel. It made me stop and think about how I feel about my illnesses being completely hidden.

I smile as I recall the number of times, while seriously unwell, even sectioned, in hospital, I was mistaken for a nurse on the ward. Most of the time, from my general behaviour and demeanour, no-one would have been able to tell the torture going on inside my head. No matter how unwell I’ve been I’ve always washed and dressed and tried to face the day.


Sometimes mental illness is more apparent, for example if someone is unkempt, looking withdrawn or responding to stimuli other people cannot perceive. But most of the time mental illness is relatively hidden if not invisible.

Is this a good thing or a bad thing?

When I despair about having a hidden illness, am I seriously suggesting it’s better or easier when the illness or disability is on show? I have wept when I’ve watched documentaries about people with facial disfigurements, the stigma, the shame they feel and the impact this has on them day to day as they fear people staring, pointing and making judgements is totally undeserving. Katie Piper is a stunning example of someone who talks openly about what it’s like. I cannot begin to imagine how people manage a condition people can see.

Perhaps this is a blog about judgements people make.


Why, whether obvious or hidden do people make assumptions and judgements about other people’s abilities and disabilities?

Why should I be afraid to park in the disabled bay? If I have a blue badge it’s because I need to park closer to the building, should it matter to other people why? The wheelchair is the universal sign for disability, it does not mean I have to be  in a wheelchair to use the space. People with conditions from autism to fibromyalgia, from COPD to paraplegia need to use disabled parking. Why is it anyone else’s business? If I have claimed a blue badge fraudulently, this is a matter between me and the authorities, not Joe Blogs Public.


On the flip side, just because someone has a visible illness, disability or condition, it seems that people make judgements about what they can and can’t do. For example, the gentleman I wrote about earlier (with the learning disability), we are working very hard with him to become more independent, which he is managing very well and it’s building his self esteem. But the people in our local shop assume he cannot do this and therefore insist on him giving them his shopping list so they pick items for him, it is well meaning but completely unnecessary and making him think he can’t do it!

The benefit of an invisible illness is that you can choose to keep it hidden, no-one else has to know unless you wish to tell them. The down side is, if people assume I’m ok, I do not get the help and support I need.

The stigma and discrimination experienced by someone with an invisible illness is due to lack of understanding and awareness that the illness exists, the assumption is, if you look normal, surely you should just get on with life?

The stigma and discrimination experienced by someone with an obvious illness is due to people making inaccurate judgements about something they think they understand but the reality is they do not understand at all.

Why do we place so much importance on appearance? We need to stop judging a book by its cover. Just because I look “normal” don’t assume I can just get on with life; if I look different, don’t assume I’m not capable.


Personal story of fibromyalgia

Every fibromyalgia sufferer will have a different experience so in coming to terms with my new diagnosis I thought I’d share with you how my fibromyalgia affects me.

For a very long time now I’ve had unrefereshing sleep which is incredibly frustrating. I’ve struggled with mental illness and have had bouts of insomnia but this unrefereshing sleep is nothing like that. I can remember going for days on end without sleeping but once I did, it would feel amazing. Now, unfortunately, I sleep, I may on the face of it, even sleep well as I go to sleep fine and I stay asleep. But when I wake, I’m still exhausted and feel as though I’ve not slept at all. I’ve learnt that I have to get an average of 8 hours sleep every night. I still struggle with the fatigue but it’s slightly more bearable. I keep a track of my sleep so if I’m feeling particularly zombified I do a few calculations of my averages and usually, sure enough, I’m down at 7 or 7.5 hours (or worse) and it makes such a difference. Most people find if they get a few good night’s sleep, they’ll catch up, but I genuinely need the additional hours made up.

My most prominent symptom is fatigue and this really gets to me because I’ve always been an active person but feeling lethargic all the time it’s really hard to make the right decisions about how much to do and when. My mental health history tells me following one’s desire to not do anything is rarely particularly helpful. But this is not like mental illness, I’ve previously not been able to trust my thoughts to want the best for me (anorexia tells you not to eat even when faint from lack of nutrition, depression tells you to spend time on your own even when in the depths of loneliness). Now when I want to rest, I’m trying to trust that this is likely to be the right thing to do but I’m still learning what pacing is all about. The problem I’m finding is that rest is not as restorative as it used to be so missing out on something to feel refreshed enough to do the next activity doesn’t really work. So frustrating!

Most people find a holiday, a rest or just a change, refreshing to some degree. Not me. Don’t get me wrong, it’s great to go on holiday but it doesn’t have the profound impact it used to. I have to factor in recovery time more so than most.

Feeling like I’m walking through treacle is a good way to describe the fatigue. I’ve enjoyed running since my early teens so it’s been really tough to contend with this aspect. Recently I’ve tried getting back into running but it’s been such hard work, my brain wants my legs to work but fatigue, pain and stiffness makes it…I don’t want to say impossible but it certainly feels impossible. I’m so so determined to find the right training programme so I can run and enjoy it again. I’ll keep you posted!

I’ve always been someone who’ll throw myself into something and pay the consequences later (i.e. “Just do it” no matter how tired or exhausted I feel afterwards). I’ve heard this is probably not the best way to be with fibro but that’s my personality so maybe it’s going to take me a while to learn how my personality type will interact with my fibro.

I don’t experience the extreme pain a lot of fibro sufferers do. For most, this is the predominant symptom but for me it’s in the background. The form it tends to take for me is that my muscles get quickly fatigued doing something very simple. For example, I’m writing this cramped into a plane seat and my shoulders are aching because of the angle, even though I’ve only been writing for a few minutes. Something as simple as holding my husbands hand in a particular (relatively normal) position for a few minutes can quickly be uncomfortable which soon descends to feeling painful. If I’m in the same position for more than about 10-15 minutes my joints start to ache which turns to pain within a short time. My hips in particular, sitting, standing makes no difference. At times, this presents itself as just not being able to get comfy which is really hard when trying to rest. It’s at these times I say the classic “I hurt all over” that you’ll hear from many fibro sufferers.

There are trigger points on the body that react adversely to light touch. For me, these are my shoulders, neck, back, hips and elbows (to name the worst). These points used to be used for diagnosis but they’re not believed to give an accurate picture anymore since the disorder is made up of so many more symptoms.

Some people talk about fibro-fog, an experience of having cotton wool for brains and just not being able to think straight or concentrate on anything. I occasionally experience this but it’s mostly linked to my tiredness, ie the more fatigued I am, the harder I find it to think straight (similar to the average Joe but the fatigue being constant rather than coming and going!) so I’m not sure I’d count it as a separate symptom for me.

I often hit a wall. I’ll suddenly get overwhelmingly tired such that I simply cannot stay awake. I know lots of people experience this but it happens about once a week for me and not at a predictable time on a Friday night, it can happen anytime and as yet I’ve not worked out how to predict it. I hope, as I get used to tracking my illness, I will manage this better.

I’ve always been a headachy person, this hasn’t changed. Headaches are a common feature of fibromyalgia but I wouldn’t know the difference. I go through periods of getting a lot more migraines and I’m trying to track these to find triggers I can then avoid but I’ve not come to any clear conclusions yet.

Gastro symptoms are also common in fibromyalgia. I have been having serious problems with daily nausea and indigestion which are being investigated (not looking forward to an endoscopy) so we’ll see if these are related to the fibro or a separate condition.

Unfortunately, my experience with diagnosis has been very unhelpful and this is common amongst sufferers. My GP was vague, referred me to a rheumatologist who was vaguer and didn’t offer anymore help than an internet page. Fortunately I’ve had good support from a new GP and she’s referring me to a specialist in London. It’s a shame that such a common disorder (2.9-4.7% of the population) doesn’t receive a more helpful response from doctors.

Something I’m having to battle with is the possible causes/triggers for me developing fibromyalgia. There is much debate around this, so my musings are pure speculation, this in itself is hard as there is no hard and fast conclusion to come to. Firstly, it could be due to how badly I treated my body during my anorexia, this is hard to come to terms with as although I do not believe having anorexia was my fault, I know I made some decisions that perpetuate illness rather than recovery (for example rejecting help when it was offered though fear of losing part of myself). Another possibility is that the stress in my previous job. I ended up covering a manager role (as well as my own position) when they didn’t recruit into it for over 18 months. I found it completly exhausting but because of my character (which was taken advantage of), I could see the work needed doing so I did it, putting everyone else first. I find myself feeling angry about this. Partly at the company, partly at myself for putting up with it for so long – due to my low self esteem/confidence thinking I had to put up with it and because it’s my character not to let people down. It’s recognised that emotional and physical stress are usually contributing factors for someone developing fibromyalgia.

I’d be really interested to hear about other experiences of fibromyalgia in the comments below. I’d love to hear how people are managing it (or not), it’s important we give each other support.