What it means to be a Fibromyalgia Warrior and How it Feels to Live with Constant Pain Everyday and Still Smile

Last March in 2016, I was diagnosed with Fibromyalgia after four long years of constant pain, constant chest infections, constant exhaustion…The relief to finally know what was wrong with me was overwhelming.

The relief to finally be believed, that the pain was real and not in my head. The relief to know that for the first time in four years, I had an answer to all the questions I’d tormented myself with the last four years: why I woke up every day in pain, why I couldn’t sleep, why sometimes just brushing my teeth hurt, why the idea of even leaving the house sent me into a tailspin, why my faith in the medical profession was almost totally eroded, why I didn’t feel better after trying countless combinations of pills…The relief was truly amazing.

I had never heard of Fibromyalgia until I was diagnosed with it, I knew no-one who had it and support groups in the west of Ireland were non- existent. I felt utterly alone and lost in a world of pain.

Thankfully I found support groups for fellow Fibro sufferers online, ‘Fibro Warriors’ as I learned we were called. I cannot express my gratitude for their compassion, acceptance and kindness. I learnt the beauty and necessity for ‘Soft Hugs’. I found a place where I could talk freely about how I felt and what I was going through.

Now I knew what was wrong,  I started reading everything I could find on Fibromyalgia. My doctors tried different meds, steroid injections and other therapies with some success at the beginning but unfortunately my body then started rejecting the drugs and the side effects came to drastically outweigh the benefits.

 

In the last few months, I have been having such bad side effects that after slowly weaning me off the Fibro meds, my doctor and I had to take the decision today to stop taking the meds altogether and see what happens.

I am blessed to have one of the most remarkable and compassionate of physicians I have ever met and cannot stress how important it is to find a doctor who will listen to you.

I know there is no cure for Fibromyalgia but I am going to do everything I can to feel better, to try to live again and not just exist. So here is what has helped me so far:

 

Heat

I cannot emphasis how much heat can be such an effective pain killer.

• The days I cannot breathe without pain, a Hot Water Bottle on my chest can make all the difference.
• A hot Shower can restore you after an exhausting night tossing and turning.
• A hot Bath is pure luxury, toss in some epsom salts and the relief is wonderful.
• A Hot Beverage can warm you from the inside, my personal favourite is Full fat goats milk heated to just before steaming point and then sipped slowly.
• I have found that a Electric Blanket in the winter can do wonders for all over body pain at the end of the day and for helping me get up the next morning.
• A Sheepskin Rug on my bed on top of my sheet gently cushions your whole body in a way that nothing, even memory foam can emulate.
• A good Scarf to keep your throat and chest warm when outside, even in the summer, can make a huge difference to pain levels.

Herbs

• Chamomile: I have been drinking this tea since I was little but it is only recently, I have rediscovered how well it can help with your ability to cope with pain, to cope with stress, to sleep, to feel calmer….
• Nettle: nettle is full of antioxidants and silica which helps repair damaged tissues and improve your immune system.It also tastes fab! 🙂
• Lavender is super soothing, calming and has a gentle sedative effect.
• Valerian can help with sleep and stress.

 

Spices

• Turmeric: I take one to two capsules of this every day and find it really helps
• Ginger: is great for those days and weeks and months when it hurts to move

 

Yoga

I have found yoga to be a marvellous help, not just for de-stressing and coping better but for having less pain. Its a gentle discipline that helps the mind and the body. The key to doing yoga when you have Fibromyalgia is to stop immediately if a movement or posture gives you pain and to be kind with yourself. A little is better then nothing at all.

Mediation

I cannot recommend Louise Hay’s books and cds on self-healing enough. Often at night, when I cannot not sleep, I go to youtube and play one of Louise Hay’s visually guided meditations and after years of listening to her, I can feel my heart slow down and my breath come easier just hearing her voice. There are so many wonderful mediation apps and videos out there.

Nature and Sunshine

I find that if I don’t spend at least 15 minutes to half a hour outside each day, I start to suffer from S.A.D and my physical and mental health suffers. I cannot recommend enough spending time in nature, even if its just growing some herbs on your windowsill. The sound of waves breaking on a beach, the call of a curlew at dusk, the wind tugging at my hair, the trees rustling and talking in the breeze, the joy in a blackbirds song…All these things, I could not live without.

De-Cluttering

I have talked in other posts about the importance of de-cluttering your home, your work place, your digital life…the more decluttered you feel, the more energy you will feel and new choices and opportunities will arise that would never have been possible before. If you feel stuck in your life, start with just one drawer and only keep what is useful or beautiful. If you haven’t worn it in a year, give it away. It is only by letting go that we can give ourselves room to grow.

Music and Singing

I cannot recommend enough just taking some time each day to listen to music, to turn the volume up high, to sing out loud and clear and to dance around your kitchen. Singing, dancing and just listening to music can relax you straightaway, liberate you from your woes and rejuvenate your soul. The gentle work out from dancing can help with muscle pain, circulation, stiffness and lack of energy.

Somedays when the pain is too great to move, just listening to music can change how you feel and help aid your healing. We have only one life so live it loud! 🙂

Other Treatments I’ve Tried

• Reflexology: really soothing and relaxing and tried it for three months but I didnt find it helped my pain levels much.
• Acupuncture: tried this twice and found the whole experience incredibly painful
• Cupping: tried once, left me with horrific bruises for several weeks and even more pain then I started with.
• Energy Healing: tried Reiki, angel therapy and crystal healing but unfortunately I didn’t notice much change after.
• Massage: I used to love having massages but when I went for one recently, I was shocked at how much it hurt during and after. I bought a Shiatsu massage chair for home and find this helps occasionally, particularly on the heat setting but there are times its just too much stimulation.

What I will be trying out next

I am going to look at what is in my kitchen cupboards already for what might help. I’m going to see which of the incredible natural resources around me have pain relief and healing benefits and I will be posting how making my own cider vinegar worked out and include the recipe. I will also be looking at how I can find ways to fight the pain and exhaustion everyday in every way I can and I invite you to join me on my journey. Together we are stronger, together we will make it.

Until then, sleep well and Gentle Hugs! 🙂

Xx