Trying to have a life and fibromyalgia gets in the way, sometimes

So I’m due at a 3 day festival this weekend.  I have a nice warm comfy camper to sleep in but the constant rain does cause havoc on my already fragile spine and fibromyalgia.  Last year was torrential rain and flooding for the whole weekend.  At this moment I don’t want to go I am so fatigued I hurt all over, even blinking hurts and writing this on my phone hurts.  I have 0 energy and today I spent my lunch break laid in the back of my camper in the car park at work just with my eyes closed resting.


The fatigue is crippling.  The constant rain is making my nervous system very over sensitive and I just want to curl up in bed for a couple of days.

I went to a gig at the weekend and I was having a great time watching a band I bought my husband tickets for last Christmas but I was overconfident and drank more than my upper limit of 3 beers and the 7 hour round trip has given me crippling fatigue, muscle and body aches and an awful headache.  I cannot make conversation and nothing is easing the pain.  It always takes 2 days to kick in.

I have to go to London for 2 days for work tomorrow and quite frankly I’m dreading it as I’m already feeling like I have the flu, I don’t it’s a flare up.

I need to focus my mind, think positive, it will pass.  I know I can do the festival I just need to do it on my terms.  Thankfully we have a couple of friends coming with us to keep my husband entertained so I can have plenty of rest.

No one knows how fatigue feels with fibro it’s like just starting off with flu and having the worst hangover ever and you also fell downstairs the day before so you feel bruised all over and it hurts to touch skin, I reckon that sums it up.  

It takes an hour to get in the bath that someone else to run for you then you have to rest after you’ve had a bath as your energy has gone ­čśé

So I’m going to get straight into bed and do some mindfulness and get focused.  Mind over matter.  I can get through London think of it as a mini break and the festival a holiday!! 

I can then moan some more next week and feel sorry for myself even more!

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 ­čśéwith 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 ­čśŐ
  • 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 ­čśü

Fatigue and fibromyalgia 

I have to be honest fatigue and anxiety are two of my most crippling symptoms at the moment.  I have had a busy weekend with a motorbike lesson Saturday morning, loading up the campervan for camping and unloading on return then I went out on my motorbike 3 miles to watch a stunt show for 2 hours.  Monday I felt great, Tuesday and Wednesday morning I have felt by far the worse I have ever felt in terms of fatigue.

I open my eyes and the stiffness and pain is extreme I feel it in every part of my body all over my skin, like I’m severely bruised, I cry lots more out of frustration I guess.  I struggle out of bed and it takes me between 90-120 minutes of waiting for my tramadoland the caffeine from my coffee to kick in.  I hate this feeling more than anything it’s horrible, getting into work is a massive struggle, today I have booked a days annual leave as I don’t even have the energy to get up.  I’ve been laid in bed for 3 hours now!!

Fatigue is a difficult one it’s all about pacing and you have to keep a diary of activities to learn how much you can do and when to rest to reduce fatigue flare ups, fatigue never kicks in straight away it takes my body 48-72 hours for it to kick in but when it does it floors me.  It’s a frustrating experience as I really had fun with my family this weekend and now I am paying the price.

Tips for controlling fatigue which I do not always follow hence why I am feeling ill today:-

  • Learn pacing; this means stretching out activities over a longer period.  I’ll give you an example I used to hoover the whole house in one go, now I have a lightweight rechargeable hoover and I do a room a night.  
  • Find easier ways to do things.  All my shopping is done online and delivered, any other essentials are fetched by my daughter and husband
  • Hire a cleaner or ask a family member or friend to help.  I am a proper clean freak so clutter and dirt stress me out so I pay my daughter a wage to clean.
  • Find ways to rest and this does not necessarily mean go to sleep, napping messes up your sleep health.  It means finding a way to relax which could be watching tv, reading a book, doing some crafts, sitting in the sun, etc etc
  • Meditate, get on the sofa and put on a YouTube and look up mindfulness meditation close your eyes, switch off your phone and follow the instructions.
  • If you are feeling down then have a good cry and get it out your system then move on, it’s my favourite way of getting all the frustration out!  Don’t let it ruin your day!
  • Stay positive, focus on what you have and what you can do not what you can’t.  I know this is hard but life is beautiful and when fatigue kicks in it’s overwhelming but we all have great things in our life even if it’s just the blue sky and sun today.
  • Keep telling yourself it will pass because it always does.  If needs be write it down ‘it will pass’ on an A4 sheet of paper and stick it on the wall to remind you.
  • Increase your painkillers to help you get through the flare up but remember to reduce back down or you could end up on a slippery slope of ever increasing pain meds.
  • Take a hot bath, not a shower and use magnesium flakes as they soak in your skin, at first you will itch and go redbut as your magnesium levels increase in your body this will stop.
  • Eat healthier than ever before, poor diet choices will increase fatigue.
  • Do not drink any alcohol as this will make you feel worse!!  The alcohol turns to sugar and is toxic to your liver it will only prolong the fatigue.
  • Get a massage it releases and removes toxins in the body and you will feel the benefit later on in the day.
  • Go and sit in the sun and top up your vitamin D levels naturally.
  • Remember your vitamins.
  • Talk to someone about how you feel, sharing your experience helps.  Why do you think I have my fibro page I need you more than you need me!!

Take a look at this site it’s got great tips and logs to help you plan living with fibro here 

Poor diet leads to increased Fibromyalgia symptoms

Don’t take my word for it, google it.  Even people without Fibromyalgia are affected by what they eat and drink so it’s only natural for us fellow fibromyalgia to feel the most severe symptoms:

  • Bloating
  • Headache
  • Stomach upsets
  • Increased/decreased digestion
  • Latheragy
  • Energy spikes, manis followed by depression
  • Insomnia
  • Brain fog
  • Weight increase
  • Itching

And the list can go on and on.

When you think back to our grandparents era there wasn’t the processed food we come to rely on now.  Everything was cooked fresh and most of the veg was homegrown.  Nowadays as our lives get more fast paced we rely more on ready made food, that takes no more effort than warming up in a device or ordering from a fast food joint.

Not only have I researched this subject to death at sites like this but I’ve also kept a food diary for 6 months and logged how I felt directly after eating and 20 minutes later and I was shocked when I reflected on the results each week.   Many foods were making me ill, feel worse and feel most of the symptoms above!!

It’s no secret that eating more natural food is much better for you and eating less sugar and salt will help you not only sustain good health but to feel better too. 

I like to focus on what I can eat rather than what I can’t.  Focus on the positives.  I’m not here to preach how you should live your life but if you want to change how you feel then you need to do something different!!

Take a look at this site here and do your own research.

Why do I rave about a good diet?  As the difference I feel since changing my diet is fantastic and I will never revert back to what I did eat before.

Start cooking fresh, over cook and freeze your own fresh TV dinners!!  Buy a hotspot and throw all your ingredients in and let the hot pot do the cooking.  Get your kids involved or your husband if you’re exhausted.  Cut down on takeaways to once a month.  Quit drinking alcohol or at least reduce your intake.  Look for sugar alternatives.  Bake yourself using healthier products like almond flour and honey etc.

You have a wealth of knowledge on the internet so why not use it?

Pain flare ups with fibromyalgia

I find there are a few reasons our bodies hurt, for me I’ve put them in to 3 categories:-

  • Psychological; for instance when I get stressed or I am under pressure, say from work, my brain then relays this into physical pain into my weak spots – my spine.
  • Not using pacing; doing too many activities and not resting enough, again my brain warns me by creating physical pain, mostly into my weak spots, my spine or all over aches and pains in my muscles or skin pain by touch, allodynia.
  • An injury, say from twisting my body or falling over.  I find that with fibro I hurt a lot by just simple acts I performed before I had fibro which might never have caused any lasting pain.

It’s important to understand which of these we feel during a flare up.  For example when I developed fibromyalgia and I didn’t know I had it and I was sure I had another serious problem with my back.  The pain was actually my heightened sensitivity to pain and the fact I was trying to undertake lots of activities such as before I had back surgery.  But when I learnt I had developed fibro I realised that my back did not need further investigation and that I had to learn to pace myself and I understood that my brain was increasing the pain signals through my nervous system instead of in a non fibro sufferer reducing the pain signals.  

An example would be falling and hurting your ankle with a sprain that Fibromyalgia could increase the pain and symptoms such as touch and to feel more like a break.  It took my sprained ankle 2 years to heal instead of a normal 3-9 months, even for a bad sprain!

Plus when you understand how pacing works, you can begin to understand your limits and reduce activities to a level that flare ups are rare and manageable.  Keeping logs and diaries are a great way to help you learn about your condition, body and reduce the boom or bust scenarios.  Please read here for more information. 


The above shows you how boom or bust works and learning to pace activities will help to reduce or even eliminate these.

Now I’m not an expert, I came home yesterday in tears as I pushed myself too hard this week at work.  I called my new manager and asked to come and see me this week as I needed to talk through my new role, his and my expectations and make it clear I will not risk my health for work.  He agreed and seemed generally caring, which is a start.

I have tried to deal with fibromyalgia by popping pain pills but this treatment does not work.  Eventually our brains get used to them and then you have to keep moving onto stronger medications.  I weaned off 5 tablets and now find that I deal with fibro much better by just taking them during flare ups, as they seem to actually work and the rest of the time I use a holistic approach, I’ll give you a brief run down of done of the things I use:-

  • Regular massage
  • Magnesium flakes in my bath
  • Mindfulness and meditation
  • Pacing, spreading out activities with regular rest
  • I use a hydraulic desk and spinal chair at work so I can work standing and sitting
  • Heat, I have hot water bottles everywhere
  • I take a varied amount of natural minerals and vitamins
  • I use positive affirmations all the time, by saying out loud positive things such as I love mornings, I am going to have a great day today
  • I use essential oils in a device click here

I am not sure where you are on your journey with fibromyalgia, but if you understand why you get flare ups and increased pain you can learn to reduce or remove these episodes. 

Don’t be a people pleaser at the expense of your health

This was some great advice I had from my acting manager and colleague at work.

I had a little cry at work as I had stopped taking the ‘pill’ that I went on to help my endometriosis and like any Fibromyalgia sufferer, anything I put into my body has much more dramatic side effects.  I did not realise how much this tiny little pill had affected me until I agreed to stop taking it as my abdominal pain had reduced and I was suffering some side effects from its use.

I felt dreadful and very over emotional.  You see it’s not just the physical symptoms that are tough to deal with but the effects this condition has on our mental health in my opinion is much more detrimental.

My colleague commented on how I spent much of my day rushing around, spending time in back to back meetings with little breathing room and I had in fact either skipped meals (very rare) or had them at my desk and no break away from my work, this was on a more regular basis.  She pointed out that no one will thank me for working myself into being ill and it’s not something to put on my gravestone that I was a hard worker and that it is just a means to pay the mortgage, clearly a fibro flare was happening on a much regular basis. She was right, I knew it myself but I guess I needed to hear it from someone else. 

It is very difficult trying to strike a balance between working in a competitive environment and striving to do a ‘good’ job where you are expected to be seen as a rising star and also saying ‘no’ so as not to affect your health.  At work we are continually expected to do over and above our roles in order just to achieve a ‘good’ rating in our yearly review but this does often mean having to say ‘no’ to other things we may be expected to do.  My diary is always very full and leaves little room to do anything else, to take on extra work on top of my day job and keep my hours to within a manageable level is a daily challenge and one I quite frankly am exhausted from.

I would recommend having regular 121s with your manager and explaining a few things to set and agree expectations.  From April I will have a new manager and the first session I will be setting up with him is to talk over me, my health and agree expectations and set up much more regular 121s than the 3 a year the business requires.  So here are my tips:-

  • Explain what Fibromyalgia is, don’t drown your manager with symptoms but split the main areas into physical symptoms and psychological symptoms.  Here are my main ones below that affect me in and out of work
  1. Insomnia, fatigue caused from sleeping an average of 4 hours sleep, 6 for when I take a sleeping tablet once every 4/5 days.
  2. Muscle stiffness and pain in my back, hips, neck and shoulders, worse in a morning.
  3. Increased pain sensitivity and painful trigger points.
  4. Nerve pain all over my body including extreme sensitivities to food, light, sound and heat causing numbness, burning, pins and needles and dizziness.
  5. Cognitive problems such as short and long term memory loss, concentration issues brain fog, inability to multi-task 
  6. Anxiety, depression, confidence issues and increase in the ‘fight’ response due to nervous system responses to stimulus.
  7. IBS and digestive issues.
  • Explain what you are doing at work and at home to alleviate your symptoms, mine being:-
  1. Medication
  2. Non medicinal treatments such as massage, uv glasses, yoga and meditation 
  3. Hired a cleaner and learnt to pace my activities in and out of work.  Severely reduced activities outside of work to save my energy to be able to attend work.
  4. Plan in extra breaks at work, hydraulic desk and lighter tablet for travelling.  Moved to a local role with less travel and a less stressful environment.  
  5. Flex hours and work from home where necessary. Book leave if notice a fibro flare is starting.
  6. Do not be afraid to ask for help or say ‘no’, always put pacing and health management first no matter what.
  7. Work slower, keep notes. Don’t be afraid to ask people to clarify points and work expectations.
  • Agree expectations between you both.  What does your manager expect, need and want from you.  What does ‘good’ look like?  What do you expect, need and want from your line manager.
  • Very important is to agree the ‘reasonable adjustments’ that you need to enable you to remain healthy and achieve your goals.  For example if you struggle with travel, can the meeting be undertaken by video/phone conference.  Is there specialist equipment you need? If you struggle with your cognitive behaviour then you might want to refrain from group presentations or being singled out when being asked questions in a public forum.

I hope you have found the above useful and if you have any questions/concerns then please do ask.

Post Christmas Fibro Flare

I really don’t feel as bad as I expected to feel.  Obviously I’m not feeling like I could cope with a full day of ‘doing stuff’ either!!

Yes I am chronically exhausted and need to rest, my sleep is not great and my head doesn’t feel like it belongs to me.  I can’t control my body temperature and my IBS is terrible.  But I still don’t feel as ill as I thought I would.

I mean let’s be honest Christmas can be a nightmare for those of us with a chronic condition.  Overeating ‘bad’ food, drinking alcohol, having to go out and travel and spend days at a time at social events which all impact negatively on our nervous systems.  I mean the worse people get over Christmas is a hangover and maybe a couple of pounds of extra weight whereas someone with fibromyalgia we can end up with the mother of all flare ups, not being able to get dressed, go out or even cook for ourselves.  The intense nerve pain, digestive issues, depression, skin itching, insomnia, stiffness, headaches etc etc, the list goes on and can be so debilitating it can ensure we housebound for days, sometimes weeks.

It’s important to reflect on this; there is a reason why we feel like this:-

  • We have no paced our activities and just dived in head first, not wanting to let people down.
  • We have drank alcohol which is a very bad idea with this condition
  • We have not ate healthily (a Christmas dinner or 3 is not all healthy!)
  • We stayed up later and get up later which ruins our sleep routine
  • We have watched much more tv and used our phones more which has disrupted our production of the sleep chemical melatonin
  • We have travelled much more than normal which exhausts our bodies
  • Social occasions tire us out too!

It’s important to acknowledge why we are having a flare and then get back on our plan.  By now you should have worked out what that is right?

Ditch the non healthy food and treats, stop drinking booze, rest, go to bed and get up at your planned times, pop on those uv glasses once it gets dark and don’t forget your vitamins, 2-3 litres of water a day, meditate and exercise daily, you will soon recover and feel more like you.

I think the reason I don’t feel as bad as I thought I would and the flare is not as bad as I’ve had in the past is that my head is in a good place and I know this won’t last .  I’m enjoying the opportunity to rest, watch some films and eat healthy nutritious food whilst smiling about the best Christmas I’ve had since getting seriously ill 4 years ago.

Happy new year everyone