15 things I learnt during my journey with Fibromyalgia



After years with Fibromyalgia, I guess it is time to write the blog sharing what I have learnt.
I have put this off so many times as I know we are all very different and what works for one person may not for others.. but this is my version of what works for me. 

Although I am an ex Nurse and a qualified Holistic Therapist I am not your trained health professional that understands your full medical history so please always remember I write simply as a lady with fibromyalgia, a patient just like you sharing her story in the hope that someone may gain some strength and feel less alone. 

You have the power to heal yourself, you need to appreciate that as Fibromyalgia can often make you feel helpless, but we are not. Fibromyalgia cannot be cured but you can heal, grow and give yourself the best mind and body to cope with all the challenges it throws at you. 

Here is a list of some of the things that I now do to achieve this healing maintenance: 

1. Try and find what makes you happy:

This doesn't sound very Fibromyalgia knowledge I know but it is top of my list for many reasons. Even on the worst possible day, within the worst flare month if you find some small moment of happiness and smile then it is one of the best therapies ever. Fibromyalgia took many things from me but the greatest gift it gave me was an appreciation for the small magical happy moments.

If you can find true happiness in the warmth a lovely cup of tea in your favourite mug gives you then you are winning!

Happiness with Fibromyalgia is not a destination that you reach and the work is done. It needs to be practised daily. Often when I feel low I just need to shut down, refocus and remember all I have read and adopted into my life as a coping mechanism to dark days, thankfully the happiness returns. 

Finding your own happiness is essential with Fibromyalgia.

Blog archive you may also like to read that relate to this:

Fibromyalgia and the first steps to inner peace
4 changes to become Fibromyalgia happy


2. Learn to say No:

Essential this one, trust me it will be hard at first if you are naturally a person who never says No but flip your opinion of this magical word.  Even if you have to issue loved ones with a disclaimer and say that from now on you can only agree if it is conclusive with your health and mental happiness. It is not being selfish saying no it is an act of self-care. Stop worrying about what other people think about your new word. Focus on you. The world keeps on spinning and people will get over you not agreeing to everything.

No is a positive word with Fibromyalgia.


3. Bath or shower?

Nearly everything I read on Fibromyalgia tips it involves a nice warm bath with Epsom salts. I love baths they are the best but since Fibromyalgia, they hurt. It is all that getting in and out malarchy. I have slipped and fallen so many times getting out of the bath on painful days when you lose your grip, your leg spasms and gives way. I avoid them now completely. During good health periods I do crave a bath with a bath bomb, some essential oils and a candle but besides that showers are better for me. 

Also while we are on the subject of baths and showers don't stress so much over them. Yes personal hygiene is essential and you don't want to be "the smelly lady with fibro" but always remember you are a not a miner that needs to scrub soot from his pores. Embrace the power of dry shampoo and a pack of baby wipes some days when you are not so good. 



4. Pacing...spread out activities:

You can not do everything in one go, even if you used to be able to just forget that now and focus on the day ahead. If you have essential activities then pace them out and do only what you can. If it can be left for another day then do it in small doses. Focus on essential activities such as collecting the children from school, getting to work on time after breakfast and hydrated. Rushing to put the washing on the line, clean the living room is not going to matter if you are hungry, no energy and dehydrated. 


5. Mobility Aids:

Give that pride of yours a boot up the backside as it is hindering your independence. If you need help and support with any aspect of life no matter how big or small then use it. There is no point trying to battle on getting sad and increasing pain and fatigue levels when there is some aid created to help you. This can be as simple as moving to buy pre-chopped veg or using a stick or mobility scooter on the school run.

Blog archive you may also like to read that relate to this:

Aids to help with Fibromyalgia


6. Sleep:

For me, one of the worst symptoms is chronic fatigue and sleep. I can fight pain, try and control it but there is no control over chronic fatigue, sleeping badly, unrefreshed sleep, waking at 3am, feeling shattered after simple tasks. Sadly they are all part of Fibromyalgia so you can either fight it or learn to live with it.  

Illness changes the person you are so whether you like it or not establishing a new way of life, a “rut” is the only way. The term rut often comes with negative connotations but for many with an illness, it helps achieve a balance for daily living. You need to throw away old routines and start to listen to your body. I find scheduled rests work well for me. It is a period to just shut down and rebalance. 

Blog archive you may also like to read that relate to this:

Scheduling and management with Fibromyalgia




7. Comfortable clothes:

One of the things I learnt very early on was that clothes are no longer comfortable so change them. I am not a rich woman by any standard, far from it. Secondhand shops or cheap bargains are my forte so this is something we can all do. My wardrobe revamp was achieved over a period of time. I had a big sort out and listed lots of dresses, heeled shoes, tight jeans on eBay. This then freed up some cash to get some key wardrobe essentials such as: 
  • Fabrics I love seem to be natural fibres such as cotton. 
  • Labels from clothes need to be removed. 
  • Easy to put on items for very painful days.
  • Fabrics with a slight stretch or they feel like a tourniquet. 
  • Get comfortable well fitting underwear. 
  • Warm clothes for the cooler seasons.



8. Heat is your best friend:

Heat is soothing and relaxing for muscles, aches and pains so invest in everything heat related. I own everything from heat blankets to heat patches, they are essential. 

If I had to give an award to the best one item for Fibromyalgia it would go to my hot water bottle, we are inseparable. As I type now I have one on my lower back and a new circular neck hot water bottle resting on my shoulders which I received today as a gift from my friend. 

9. Diet changes:

Being a Qualified Holistic Therapist I knew right from the beginning the power of lifestyle changes in the diet area and health. I have honestly tried everything looking for the magical key to recovery but sadly it does not exist. What I have found though is the correlation in symptom exacerbation and diet.

Now, this is where it gets complicated in a way as I am saying diet helps but then saying it doesn't cure. I know lots of people like myself that follow various eliminations such as gluten, dairy and elimination of meat but we still have flares and symptoms. So many may think what is the point of a diet change as you still have flares?

There is no such thing as a Fibromyalgia diet so if anyone suggests one, they must be selling you something. What I and many others have found is that certain things can no longer be tolerated by our bodies, almost like Fibromyalgia has changed our digestive systems.

I can not tolerate any dairy products. Cheese makes me physically unwell with severe pains and vomiting. My body also works best with a Vegan diet. The symptoms and flares are still with me and I still have fibromyalgia but it is managed better than previous years. If I sway from a Vegan plan then the symptoms increase. It sounds quite hard to follow a vegan diet but it really isn't as there is so much choice now.


Blog archive you may also like to read that relate to this:

My adventures with lactose intolerance and Fibromyalgia

10. Practising Mindfulness and meditation:

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them, without believing, for instance, that there's a “right” or “wrong” way to think or feel in a given moment. Just enjoying the moment with no background stress. Mindfulness is controlling your focus on being intensely aware of what you're sensing and feeling in the moment, without interpretation or judgment.

I always say the best way of starting to understand present moment stuff is to get one chunk of chocolate. Then relax in a quiet room and allow the chocolate to melt in your mouth slowly. Observe the taste, texture, how it makes you feel. Saviour every second of this one chunk of chocolate. Now imagine how fast you would usually eat a single chunk whilst doing and thinking of a million other things. Compare this to one minute of your life. If we become present in each moment of life them we are more aware of its enjoyment.

Being a hippie-dippy happy-clappy tree hugger I do believe everyone needs clarity to connect to all that guides them through life. You really do need a guide with Fibromyalgia. However, people don’t always keep to the script sometimes they veer off course. The Universe often waves her "Retreat to the woman cave and switch off" flag when I am getting mentally overloaded. 

Timeout and silent self-reflection is so important. It gives people the chance to look back and identify the areas where they’ve blossomed and the places where they’ve left the path and it becomes a bit foggy.

“All of humanity’s problems stem from man’s inability to sit quietly in a room alone.” Said Mr French philosopher Blaise Pascal and I agree with this chappy. 

Practising mindfulness also involves breathing methods, guided imagery, and other practices to relax the body and mind and help reduce stress, but a chunk of chocolate is a good way to start.


Meditation is something that anyone can do at any time and anywhere.

Don’t think that you can’t meditate. If you are concerned that you don’t understand what it’s about, don’t worry, nobody does in the beginning! 


Blog archive you may also like to read that relate to this:

Meditation and a pain relief for Fibromyalgia 
Be here now and discover the magic of living.

11. Check your standards:

Admittedly my standards were never that of a pristine show house even before Fibromyalgia but even I had to drop my standards on many things. You just do not have the energy to keep up with all the jobs you once did within the house so let a few slip guilt free. 

You do not get a prize for doing all the ironing or having the house hoovered top to bottom every day.

Is it worth the stress of an argument with a teenager simply because there is a butter knife and crumbs on the breadboard? 

Stress is a massive trigger for a flare so it is essential to drop being so picky and just ignore things. Start putting your health and resting first before your now unrealistic standards.

12. Coping mechanisms

I couldn't survive without finding my own coping mechanisms for each symptom. This is very much trial and error for each individual person. If you spend a day, week, month and feel an improvement in a symptom simply by making some changes then write it down.

During the early days, I would log everything so I understood my body and symptoms so well. I would find new ways of doing things that worked better for me.


Blog archive you may also like to read that relate to this:



13. Avoid Stress:

I found for me the biggest trigger is stress (besides overdoing things) so I avoid it at all cost. This was so hard to do initially as you have to completely rearrange your life. I now try and live daily in a little happy bubble with my forcefield closed tight to external stress.  

Have a look at the times you feel your stress levels increase and keep a little journal of this. You will soon see a pattern emerging and it will give you some food for thought with things that need to change. 

Here are some I identified for me: 


  • I stopped watching the news on TV. 
  • I stopped buying newspapers as they are just filled with stress and sadness.
  • I had a social media break, closed down my big account on Facebook and opened a new small one.
  • I check my circle regularly to keep it positive. 
  • I found my love for politics was stressful so stopped following it so rigidly.
  • I found I stressed over wanting to "change the world" when reading current events of injustices in the world, so tried to contain the space I gave in my mind to them.
  • I found certain family/friends were not good for me emotionally so distanced myself from them.
  • I found I now had sensory overload so had to manage that.
  • I found that Fibromyalgia support groups on Facebook just increased stress for me so left.
  • I found too many medical appointments in one week stressed me so staggered them over longer periods.
  • I limit caffeine as it increases my anxiety levels. I find two cups in the morning is my limit.



Be ruthless in your pursuit of a stress-free existence.

Happiness hoovers also need to go with fibromyalgia management. These are the people that suck the happiness from your soul and replace it with a dark cloak of sadness. No good for your mental well being, get rid of them!

Blog archive you may also like to read that relate to this:

Fibromyalgia and sensory overload to sound.

14. Medication Education:

Over the years my medication for fibromyalgia has changed, it changes now with seasons as I have learnt to understand my body so well. It is really essential to gain as much education as possible about the medication you are given. 


  • Avoid scaremongering regarding medication, try them for yourself.
  • Do not think that every new symptom is due to Fibromyalgia, it may be a side effect of the medication you are on. 
  • All medication is trial and error so give it time. 
  • Don't be scared to have a medication update with your Doctor, that is what they are there for. 
  • Look into combining conventional medicine with alternative medicine. eg, I take tramadol and also take CBD Oil for pain. 
Blog archive you may also like to read that relate to this:



15. Distraction techniques help:

I spend most of the time doing crochet as for me it is a distraction technique to stop me focusing on the pain. Have a go at finding what works for you.

Blog archive you may also like to read that relate to this:

Learn to crochet to use as a form of relaxation with Fibromyalgia
7 Hobby inspirations for the housebound with Fibromyalgia
Chronic illness detoxing

...and I best stop there even though I have so much more to share as the blog is getting too long.
Maybe part 2 is needed?

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Love and gentle hugs

Ness xx





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Comments

  1. I am undergoing a facebook clear out and also some fibromyalgia groups too. Listening to my body finally now instead of fighting with it is making a massive difference.
    Love reading your posts you help more people than you know. xxx
    Love Colleen x

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    Replies
    1. Colleen, thank you so very much, this means the world to me. So glad you are taking the steps to listen to your body more, you really will benefit from that. Massive hugs xx

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