Marianne Brown's Story

What were the steps leading up to your diagnosis?

I have advanced spinal degenerative disc disease; I lost two discs before 40, developed spondylothesis (twisted spine), and had a spinal fusion after having one if my discs removed. I developed fibromyalgia over two years ago after my operation.

It took me two years to get diagnosed with this condition. I have been to hell and back. I have been off work sick more times than I've been off work over the past two and a half years.

I suffer exhaustion, widespread pain — especially in my spine where I have been fused — I have cognitive issues where I struggle to concentrate, remember things and sometimes even socialize.

I am super sensitive to every stimulus, external and internal, from light, sound, food, drink, stress, excitement, beauty products and everything else that can affect the nervous system.

I was also diagnosed with low levels of vitamin D and an underactive thyroid.

I've tried every medication there is on the market; I've gone from 30 pills a day pre-operation to no regular medications and only sporadic use of painkillers when I need them.

I've been hospitalized with migraines and intense pain. When I get a cold or flu I become bedridden and my immune system cannot defend the germs.

Who has been there for you? How?

My family has been amazing. My husband has had a hard time accepting my illness as he felt I would get better and this would go away. His acceptance has been a great positive for me.

My daughter has taken over 80 percent of my cleaning and I pay her to do it.

I have a Facebook page and a blog and this has helped me share my story and gain tips of others it's been the best thing I decided to do.

Some of my colleagues at work have been amazing. Being there for me, supporting me in helping to move roles. Been there as a shoulder to cry on.

What accomplishment are you proud of?

I'm proud I've spent time researching this condition as I feel my eyes are wide open and I know what I need to do in order to get this under control.

I found two supplements from the USA that contain a fantastic list of ingredients for fibromyalgia — one for the day and one for sleep.

I’ve been qualified as an NLP practitioner and hypnotherapist for over three years ago now and this opened me up to how powerful our minds really are. Pain comes from the mind, as it sends signals out into the body. You can control how you feel about pain.

That I got off all my medications, as they are not a good choice for long-term treatment of fibromyalgia.

Creating and continuing my blog and Facebook page from something more generic to a proper fibromyalgia information set up.

I'm proud I asked to see a psychologist and took the referral to start the mindfulness course.

What lifestyle changes have you needed to make?

I gave up the gym, swimming and interval training as I no longer have the energy to do them right now and I get intense pain from the lactic acid as I push myself. I switched to mindfulness yoga, which I have managed to build up to three times a week. It still hurts but I can cope with it, plus it's making me stronger.

I no longer socialize in clubs and my husband gave up DJing. We now take each day as it comes and I pace myself to manage nights or days out. If I don't feel well enough I don't go. I use acoustic earplugs at gigs.

I gave up my high-flying business change lead role and moved back into a project support role I did 20 years ago to reduce my stress levels. I don't have to travel anymore, as I used to be away three to four nights a week, and I am now back in full-time work after working reduced hours for four months.

I don't drink alcohol unless I go to a concert or festival where I might drink a shandy or two. I only drink one coffee before 8 a.m. every morning, down from my usual four or five a day. Both of these kept me awake and I felt a crash once they wore off.

I eat a strict natural organic diet 80 percent of the time and 20 percent are cheat meals. I feel my energy levels are much better and I lost 14 pounds of extra weight I was carrying.

I undertake two to three mindfulness meditation sessions every single day, which have reduced my stress and pain levels. I undertake mindfulness yoga every other day and I'm looking to increase this. This exercise is making me feel stronger and less stressed.

I gave up all my regular prescription medications, which took me three months to wean off them all. I found these were making my brain fog and exhaustion worse. Plus the painkillers became ineffective as I got used to them.

I ditched all beauty and make up products and swapped it all to organic natural products. My skin feels less itchy and doesn't burn as much.

I increased my water intake to a minimum of three liters a day. I use a hot water bottle on my lower back every day as it is a great natural painkiller.

I have a hydraulic desk at work and a specialist spinal chair. I swapped from a car to a motorbike as I do not have any pain whilst riding.

I keep pain and activity diaries to track pacing and learn what I can and can't do and how long I can undertake each activity before I get either exhausted or in pain.

Is there anything else we should know?

I don't hate this illness, as it opened me up to learn things about me and our minds and bodies that I never thought possible. I am trying to learn to love this condition but I am not quite there yet!

What's your advice to someone else living with Fibromyalgia?

Never give up and ask for help.

Research, research, research. Doctors are general practitioners and do not always know what's best for a specialist condition like fibromyalgia.

Be prepared to change your ways and habits and become the best healthiest 'you' you can possibly be.

Prioritize your mind before anything else. If you get your head right the body will follow. Our mind controls everything in our life.

Use CBT, NLP, hypnotherapy and mindfulness techniques. If you retrain your brain the pain, exhaustion and suffering will reduce and you will live a happier, healthier life.

You cannot control the situation you find yourself in on a daily basis but you can control how to react to it.