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 

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 

Diet, lifestyle and fibromyalgia insomnia

Here’s my theory, does your diet and lifestyle aggravate fibromyalgia?  Does what you eat and drink stimulate the nervous system and keep you awake at night?  Does not exercising affect sleep?  Does your mindset affect your sleep?  If you answered no to any of these then I would bet you a months wages that it is true, all of it!

I have eaten a largely Paleo based diet for a number of years now, way before I developed fibromyalgia, but I still regularly drank alcohol at weekends.  I gave up regular exercise after my back operation 2 1/2 years ago and tried and quit the gym 3 times with a doctors letter (I didn’t know I had fibromyalgia do thought I was injuring my back further).

I gave up my beloved hypnotherapy hobby as I did not have the energy and my mental health went into crisis mode.  Believe me I hit rock bottom many times! Even begging the doctor to see a Psychologist.

I could not sleep, felt like I had flu, my spinal fusion was hurting like hell and I was so stiff in a morning I had a year off sick in 3 years added together!  I used most of my annual leave to cover up my health problems.

I am sure many of you can relate to the above.  Fibromyalgia is not as complicated as some people make it out to be (Your General Practitioner).  It is a problem with our nervous systems and what affects our nervous systems? Everything! That’s what.  There is no cure, quick fix it’s all down to an approach to life and that means learning new ways to live.  I know what I’m talking about i live with this every day I just could not see it until the last 2 months through research and talking to others I have seen the light.

Fibromyalgia interrupts our sleep and sleep deprivation makes fibromyalgia symptoms worse, so how can WE help ourselves?  

Have you ever kept a food and drink diary and looked into what we eat and drink? Do you still drink several cups of caffeine a day, use cows milk?  Drink alcohol, use sugar? Eat convenience foods?  Skip meals, eat sweets, crisps, cakes and eat everything out of a packet that you shove into the oven or worse a microwave?  I used to.  Here’s what I do now:-

  • I switched to organic (where possible) 
  • I eat plenty of fresh veg, I limit fruit due to the sugar content.  
  • I don’t drink cows milk, who ever decided that drinking another animals milk is good for you?  Calcium is in many other products.  I use alternatives.
  • Ditch caffeine or cut down to one a day, first thing.
  • Ditch sugar, one of the most addictive substances known to man. I use a tiny amount of organic honey in smoothies only.
  • We eat mostly (I’m not a saint) fresh home cooked food.  I guess now you might be thinking I don’t have time to cook?  Make time.  
  • Invest in a slow cooker and get out of bed earlier.  
  • Batch cook, refrigerate and freeze leftovers and make your own TV dinners.
  • Throw away the microwave and use the oven, I did.  Microwaves make us lazy and I don’t think it’s particularly healthy to warm up food with a microwave, have you read how they work?
  • Get a blender and make breakfast the night before
  • Make your own cereal bars or buy organic snacks for when you’re ‘on the go’
  • Don’t eat within 2 hours of going to bed
  • Eat slowly and mindfully, enjoy your food, don’t just wolf it down.
  • Eat smaller portions 
  • Eat every 3 hours to stop yourself from feeling dizzy
  • Ditch white carbs, over processed junk!
  • Ditch processed food full stop
  • Don’t eat anything with ingredients you would never add to home cooked food.
  • Keep takeaways to a monthly treat and go somewhere where the food quality is high standard
  • Stay away from McDonalds, KFC and fast food joints
  • Pub grub is a no no unless home cooked if not they should be avoided unless you want to feel ill!  Ask yourself how sluggish you feel after one!

Remember years ago when your grandmother used to cook, would she go to the shop and throw in processed food into the oven then just throw it on a plate and eat it, no of course not!

This is how my sleep used to look from my Fitbit, absolutely terrible and yes I still went to work but I felt very ill.


A few lifestyle changes, which I will come into another time and changing my diet and this is how it’s changed this week


I haven’t slept 7 hours this year!!

Anything over 4 hours and 30 minutes is a celebration.  Am I cured?  Of course not but no doctor can help you get here.  I’ve tried every sleeping tablet going, Amitryptyline worked for 6 weeks then it stopped and it took me 2 months to wean off them and not I felt ill.

Start looking into your lifestyle, diet choices.  Hey you may even drop those extra pounds you’ve been carrying.  I manage to offload a stone in weight without even hitting the gym regularly.  A big part of aiding sleep also has to be exercise, if you sit round all day and don’t tire yourself out you will not get restful sleep.  But I’ll touch on that next time.  Read more about what YOU can do to help yourself here 

Working with fibromyalgia

I had a particularly rough day yesterday.  I felt really negative and I seemed to slip into a dark hole.  I wasn’t expecting it but I knew something was happening which is why I opted to work from home.  It wasn’t just exhaustion!

Like an idiot I worked from my bed, it was not comfortable for long.  I woke up this morning feeling like I’d been hit around the top half of my body with a baseball bat!!  Next time I will sit at a desk and take more rests.

I had a very depressive day, I couldn’t bring myself to meditate and didn’t want to talk to anyone at all. I even went to sleep at 8.10PM on my own as my daughter was at her dads.  I did manage 6 hours sleep in the 10 hours I was in bed. Yay.

It isn’t healthy shutting ourselves away or sitting hunched up in bed all day, we must keep mobile or the stiffness sets in and boy did I feel it today.

Working with this condition is by far the hardest thing I’ve ever had to do.  The exhaustion, stiffness, aches and pains (my fusion still hurts), mental grogginess, anxiety and depression is tough.  Giving up my dream job was hard, I was do good at it, but once this condition started to get worse I couldn’t do what was expected of me.

Do you all still work?  What changes did you make to your working conditions?

Did you have to quit your job?

I won’t give up until I cannot get out of bed and I will not allow that to happen. 

So, what did I do st work to improve my symptoms:-

  • I was honest about my condition
  • I work from home when I need to
  • I book annual leave when I need a rest, I’ve learned from mindfulness and keeping diaries for pacing when I’m about to have a Fibro attack
  • I am strict about working hours
  • I will not skip lunch
  • I drink a minimum of 3 litres of water a day
  • I eat breakfast and lunch and I ensure I make my food as organic as possibly
  • Don’t eat takeaways or food on the go from the canteen unless organic
  • I do not drink any flavoured sweetened drinks
  • I only drink one coffee a day
  • I keep an action log
  • I block out activities I need to do in my diary
  • I have a hydraulic desk and specialist spinal chair
  • I gave a lightweight laptop and a tablet for travelling
  • I will not have meetings later than 3pm
  • I try not to undertake back to back meetings I try to leave a 15 minute gap between meetings
  • I have refused to travel to a meeting in London and insist on conference facilities until I feel stronger
  • I registered for a disabled parking space
  • I listen to a 10 minute mindfulness recording each lunch time
  • I fetch a drink or go for a walk each hour to stretch my legs

Read some more useful tips here 

Pacing with fibromyalgia

I have kept diaries in the past to track pain which was hard to determine what caused it as I did not know I had fibromyalgia at that time.  Everything hurt like hell 😂😂

I started to keep a Fibro diary about 3 months ago to see what caused pain and exhaustion to try to help me figure out what I could do and not have a Fibro attack, crash whatever you want to call it.

As part of my mindfulness course I am trying a new one which is a much better plan:-


This lists, activity, time taken, a rating for whatever you are tracking, mine is pain and exhaustion as separate ratings.  1 being minimal and 10 being extreme.  Then I log a physical tension rating and whether I perceive the activity as either an increase ‘+’ or decrease ‘-‘ or no change ‘0’.

The whole purpose of this is to try to see what activities increase pain, exhaustion and tension or whatever your scale is tracking, then to try to reduce the length of time by 20%, to try to reduce the boom, bust cycle, so the overdoing it then becoming ill, making myself incapable of activities until recovered. 
For example if sitting for 10 minutes is ok but more is painful, I just get up at 8 minutes and do something else for a period of time to reduce the chance of pain.

This is great in principle as it can help me plan my day better but presently it hurts to sit and stand at work and the more walking I do the more exhausted I get 😂😂. Since adding the hot water bottle I can sit for longer.  So I have in fact found a compromise.

I am going to keep the diary for a few days until my next session to see what happens and see if I can change anything to ensure I don’t fall into the boom or bust cycle. 


There are some great tips on the 2 pictures above.  

I have even been using my mindfulness meditation at work at lunch time as I find it helps me control my exhaustion due to mental exhaustion.  I don’t even need to close my eyes anymore as I can do it staring at something with a soft focus.

The pain I have is lower back ache which has ramped up since I restarted my regular mindfulness yoga.  It’s just lactic acid building up in my body as I allowed myself to become immobile.  The more I exercise the stronger I will become and in the long term my pain will reduce.

I will never ever allow myself not to be able to exercise and I will not allow myself to get overweight as this would be irresponsible and showing contempt for my health and wellbeing.

Fibromyalgia and women

I read a great fact based article today about this condition and why it’s predominantly women who get diagnosed.  I absolutely do agree with the hormone link and why it’s again predominantly around middle age, but there are a few exceptions as there is with most conditions, ones that fall outside the ‘norm’.  Read more here

I know why I developed it, I have spinal disabilities and had major surgery on my spine to correct the twisting and collapsing of my spine.  My dad also has ankylosing spondylitis, another link to why I developed this, it’s in my genes.  I am certain if we all reflect on our family history and health we can work out why us?

This condition does not have a cure, it’s a chronic condition.  It will not kill us but it DOES have a serious detrimental effect on our quality of life.  We CAN however takes steps to improve our quality of life; keep diaries of our condition, what we eat and drink, sleep journals, activities we do, how we feel mentally and physically.  From this we can work out what is toxic and needs to be removed or reduced in our lives in order to improve our symptoms.  This IS going to be a challenge, if it was easy none of us would be suffering!

I will not give up this challenge, why? Because this is my life and I will live a good quality of life.  The best that I can.

Are you with me? Or are you prepared to give up?  Trust me I have been to hell, I’ve suffered so much pain, given up so much of my old life, landed in the gutter so many times.  

I WILL NOT GIVE UP, NOT UNTIL I AM OLD AND DEAD.  BECAUSE IF I HIVE UP I MIGHT AS WELL BE DEAD.

#fibrogoals 

Struggling with Fibro symptoms each month!

Wow today has been rough.  I usually have to deal with the pain with Oramorph but I’m resisting this month.  I’ve stuck to co codamol and Tramadol, the first 2 co codamol has done nothing this afternoon, I’m  hoping the Tramadol works.

I’m on my 4th hot water bottle today and the pain is bleeding through.  I know this won’t last, the first 48 hours are always rough, then the remaining 3 days I can deal with.

I did not get anything much done at work this afternoon as I could not think straight, so I came home.  I’m hoping an early start tomorrow will be just the ticket.

I was reading on the Internet about options for this as it’s not something women with fibromyalgia talk about much, but we should.   In particular ones that are coming up to menopause age, I’m 41, my mum was 38! Anyway there isn’t much advice apart from going back on the pill! Ah no thank you.  I am not putting more crap in my system.  No I’ll stick with my yoga (I did it last night), my hot water bottle and the odd painkiller.  Read here for more details.

When I feel this much pain I hate this condition, it’s as painful as the start of contractions in childbirth.  But from under taking mindfulness meditation I know it will pass, it’s not a permanent state.  Things will get better.