Fatigue and muscle weakness and pain getting worse

Sometimes it takes a while to realise that things are getting worse with your health.   I’ve been attending Download Festival now for 9 years and I noticed last year I was more tired and achy but this year was dreadful.  I only managed to walk into the arena once each day and I had to spend the rest of the time sat in the van.  I missed all the headliners.  The Disability camping was moved further away to a better site but it was a 50 minute round trip to the entrance on a hill.  I could not walk that far so when I went back to the camper I was done in.  Now I’ve always been able to walk around the festival but this year it was different.  I have took the decision next year not to go and I am going to start working on my fitness levels.  

I read an article about a woman that started doing intense interval training and it was by no means easy but she managed to reduce her fibro symptoms so much that she doesn’t feel that she has it anymore. I do believe this is possible and I can only imagine how ill she felt and how much blood, sweat and tears she shed.  Now obviously this is not an easy task but if one person can do it then it is possible and not impossible.  I used to do high intensity interval training even when my back was degenerating and it was only when I stopped training that my fibromyalgia symptoms started to come out.  I even trained after my fusion and it’s only when I started to hurt I slowed down training that I started to get more ill.  The less you move the worse it gets. 

Our bodies are not made to be immobile we were naturally born hunters always moving around, but as time goes on our lifestyles make us more unhealthy.  We have tv to watch, cars to move around, processed and fast food.  Drugs we can take to mask over health problems.

I am a real believer that food and exercise being the only medicines I need.  All medications have side effects and are not good for the mind or body.  I tried to come off anti depresssnts last year and use s more natural alternative and I became so ill after 3 months I went back into them.

Painkillers are not good for the body either and you get used to them so end up either on maximum dosage or on something stronger.

I have never suffered from such debilitating fatigue or muscle aches and weakness until this year and it’s getting worse.  Some days I can barely walk at all and I’m constantly having to rest after everything I do.  I have to plan all my activities to the finest detail so not to overload my nervous system.  I cannot stand loud music or bright lights and have to wear earplugs a lot, which is fine I have no problems with that.  I get sunburnt easier and my skin swells up so I bought some natural sun cream.  My scalp started to itch and I bought some special shampoo which reduced the itching.

The fatigue and muscle weakness is extreme.  I find myself doing less and less and from what I have noticed the fatigue, weakness and pain is getting worse.  It is a battle of the mind as our mind tells us to do less as we hurt, but it is the wrong decision.

The less you do the weaker the muscles get, but it is much more painful to exercise as muscle pain can be very extreme with fibromyalgia.  When I used to regularly work out I used to hurt from the gym but I liked it as I knew I was getting stronger.  But with fibro the pain is sometimes so bad after working out that it can make me cry and my whole body throbs and every attempt to move is excruciating.  In order to get stronger I have to keep pushing so the pain from working out will last weeks or even months.  You have to start slow, I have managed to do 3 ten minute workouts on the power plate this week.  Next week I am going to build up to 4.  I am also trying to walk every day and I have stopped using the lift at work and take the stairs.
Next year I am not doing the Download festival and I am hoping to get back into interval training.  I want to test out the theory of regular exercise reducing fibromyalgia.  Exercise can help reduce anxiety, depression, increase mental alertness, reduce insomnia, reduce muscle weakness and aches and pains.  Over time it can also help with fatigue.  In the short term it will get worse but what have I got to lose, I hurt anyway whether I move or not.  I have felt a dramatic worsening of physical symptoms from doing less exercise so my moving less to ease the symptoms have made it worse.  The only way to change what we have is to do something different so that it what I am going to do.  Here is some good tips of exercising with fibro here 

Emotions Impact Pain

I never understood the impact of emotions on pain until I studied for my hypnotherapy diploma back in 2013 and then took a pain management diploma last year.  I also didn’t realise how changeable pain is, it isn’t constant and it is controlled by our brain.

When people have a bad accident the emotional state of the patient is critical to recovery which is why medics often give high doses of medicines such as ketamine to relax the patient so that they don’t really know what is happening, reducing the chances of going into shock.

When I went for spinal surgery I was quite emotional knowing it was a 5 hour procedure with a high risk of paralysis or nerve damage, I was shaky and trying to be brave but my consultant and surgical team understood how I was feeling.  They gave me IV Ketamine as they were setting up my heart monitors and getting the operating table ready as I had to lay face down for my operation, I did not care what they were doing to me I laughed hysterically as the drug took effect then fell unconscious, meaning I was not stressed at all whilst they were putting me to sleep.

After surgery I began to notice that the more I fought (in my mind) not actually fighting anyone 😂with the pain that came with developing fibromyalgia and recovering from surgery, the worse it got.

Fibromyalgia increases nervous system sensitivity as well as other other important roles it controls the messages that travel to and from our brain for pain management.  Have you noticed that when you’re sad, upset or in another ‘negative’ mood that pain feels worse, but if someone makes you laugh or you spot something that makes you smile inside the pain reduces, even if it’s a brief respite?  Have you noticed that when you wake up happy and the sun is shining that you wake up feeling less stiff and in less pain?  You might be saying to yourself ‘no’ but you do I assure you, it might not be for long but you will. 

I want you to try something for me, the next time you are feeling happy, are laughing, maybe you’re outside with your family having fun, just stop and do a mental scan of your body and compare it to when you have been in a ‘negative’ mood and I promise you your symptoms will feel much better, reduced, maybe give even forgotten about them!!

This does not mean it’s all in your head, pain is controlled through a complex system involving our nervous system which travels up to our brain through our spinal cord and how the pain is felt depends on the individual, emotions, past memories etc.  Some people can handle lots of pain.  Before my operation my twisting spine was very painful but I still went to work and the gym for 18 months and I had to have my painkillers increased to 20-25 a day until I begged the doctor to do something as none of them worked anymore and fentanyl was looking like the next option and no way was I quitting my job!! But now one little episode of pulling my back, a headache, banging my arm or whatever can quickly become so intense I can end up paralysed in pain or hysterical.

I had a very stressful weekend once dealing with some inappropriate behaviour of some I knew last year and the stress brought on a panic attack, something I’ve not had since I was 17.  I developed a migraine that was so painful I could not see, had to sit in the dark, my heart rate and blood pressure were off the chart.  No medication helped and the ambulance service rushed me to hospital for a potential brain scan.  I was horrified and embarrassed when we realised it was nothing more than a migraine.  Only the 3rd time I’ve ever had one and they had never been that painful, welcome to fibro.

Painkillers are a band aid for pain. Some are very effective but the brain gets used to them and more or stronger versions are needed, not a viable long term strategy for chronic pain.  My painful twisting spine was resolved with surgery but Fibromyalgia is in a league of its own as there is NO cure and not a pill that will keep the symptoms successfully under control long term.  

The nervous system is complex, feel free to read more about how it works here. I not only talk from being a qualified hypnotherapist and pain management therapist but someone who has Fibromyalgia.  I believe the messages/chemicals that are supposed to travel back from our brain to our nerves during pain do not work properly and no operation or pill is going to cure such a complex system.  Even if they did invent something to help at what cost would this be to our health.  All medications give side effects as they change our mind and bodies state.


I know some of you are desperate for a cure and hate having this condition and let me be honest I’d give a limb if I thought I could get rid of it but I can’t.  So I do the next best thing and accept it is part of me, fibro will never go away and me and my fibro (I’m thinking of giving it a pet name) have to coexist and get on.  Like you might have to with a naughty sibling or a demanding irritating boss at work.

Learn from your experiences; the most powerful skill you can learn is how to control pain, how to reduce the length of time a flare up lasts and how you react to both of these! 

My flare ups are rare and they don’t last longer than the same day they occur as I use my mind to help me get through it.  I can’t stop all flare ups as I want to live, I want to work, I want to go out with my family and I want to have holidays, but I can change how I feel about them.

My top tips for dealing with pain:-

  • Remember it will pass, pain changes and is not constant, it is like a volume control on a radio and you can change it in any direction you want.
  • Stay positive, if you are struggling then have a good cry and then do something to make you laugh.
  • Exercise helps and reduces pain long term whilst releasing endorphins like a natural anti depressant.
  • Stay away from fibromyalgia support pages that focus on negativity as this will NOT help you at all.  
  • Try yoga, not once but every day for just 5-10 minutes.  Have you ever met a miserable unhappy yoga teacher?  No of course not.  It’s relaxing and gives you focus and mental clarity.
  • Only temporarily increase painkillers then cut back asap.  Remember these are not the solution, they are a band aid.
  • Listen to music, meditate, undertake self hypnosis to lift your mood, clear your head, take you to your happy place 😊
  • This last one might sound crazy but I actually use my headspace app and focus my breathing through the area that hurts and it changes the pain.

One last thing do not sit and stew about the pain as this will feel increase the pain.  Talk to someone and if you haven’t got anyone you are more than welcome to talk to me 😁

This book changed my life – competition

This book and cd was lent to me by the Psychology Centre in Chesterfield under the NHS.

Pain, suffering and stress can be intolerable – but it doesn’t have to be this way. Mindfulness for Health reveals a series of simple practices that you can incorporate into your daily life to relieve chronic pain and the suffering and stress of illness. Clinical trials show that mindfulness meditation can be as effective as prescription painkillers and also enhances the body’s natural healing systems. Mindfulness can also reduce the anxiety, depression, irritability, exhaustion and insomnia that can arise from chronic pain and illness.

Mindfulness for Health is based on a unique meditation programme developed by Vidyamala Burch to help her cope with the severe pain of spinal injury. Taught at Breathworks in the UK – and its affiliates around the world – this programme has helped tens of thousands of people cope with pain, illness and stress.
The eight-week programme at the heart of this book takes just 10-20 minutes per day. You’ll be surprised by how quickly your suffering melts away, leaving behind a deep-seated love of life.
You might be thinking this sounds too good to be true but it really has changed my life.

This is a great video here by one of the co-authors that explains why she wrote the book 👍

Dr Danny Penman is an award-winning journalist and author. He has worked for the BBC and The Independent newspaper. He is a feature and comment writer for the London Daily Mail. He holds a PhD in biochemistry and a postgraduate diploma in newspaper journalism. He is co-author of the bestselling Mindfulness: a practical guide to finding peace in a frantic world (Piatkus).

Vidyamala Burch is founder and co-Director of Breathworks, an organisation offering mindfulness-based and compassion-based approaches to living well with chronic pain, illness and stress. In 2008 she published Living Well with Pain and Illness: the mindful way to ease your suffering (Piatkus) which is based on the Breathworks programme. She has also produced led meditation CDs and booklets available through Breathworks.

Mindfulness is about the quality of attention that you bring to the moments of your life; it’s awareness with non-judgmental, open-hearted acceptance. Integrating mindfulness into your life can do wonders for your well-being in all areas of life. It helps you to focus your mind, see things more clearly and calm your body – a very helpful and healthy way to manage the stress of our busy lives; to more skillfully manage emotions; and to stop reliving the past and/or worrying about the future.

I am running a competition to win this book on my FB page.  All you have to do is share my page, like and comment on the competition post here