Recovering from fibromyalgia and CFS/ME

After years of unexplained symptoms, a fibromyalgia and CFS/ME diagnosis and the loss of her job, Carole discovered the mind-body approach. She made a full recovery and now helps others do the same.

The perfect storm

Emotional pain is every bit as real as physical pain. In essence they are the same: you get hurt, you feel pain. It’s the ‘you can heal’ bit that people with emotional pain struggle with.

If you have a physical injury, such as a pulled muscle or a trapped nerve, then you have something to hang your hat on, and these do heal with time and patience.

It’s only when it still ‘hurts’ after the rest or treatment period has finished, and turns into chronic pain, that it has morphed into emotional pain.

We are, of course, completely unaware of what triggers this, but your mind isn’t. It’s sneaky in that way. It waits patiently. Your body keeps the score, and if for whatever reason you’re unable to deal with past or present traumas at the time, or your subconscious decides you’re not ready yet, it holds on to them for a later date. That is when your real pain begins.

Just a niggle here and there, stiffness in your muscles from the stress and stressors of every day. The creeping tiredness of never having enough time to relax, the nights of little or poor sleep because your mind can’t switch off. Constantly thinking and replaying: could I have done that differently, or better? The injustices or perceived injustices of everyday life, your parents, your teachers, your in-laws, your partner, your co-workers or boss, all building up to the perfect storm.

Grief, endings and new beginnings all add to this melting pot of emotions that bubble away. A thick skin forms on this emotional soup as we let it simmer, occasionally giving it a stir or turning the heat down. But gradually the pot burns dry and then ‘BOOM’! You’re in a place you have no wish to be. How did that happen? How could I have been so stupid? I just don’t know what to do next.

So you pick up what can be salvaged and go through the whole thing again. You might do this a couple of times or several times, but each time it gets harder, the climb steeper, and the fallouts and setbacks more and more difficult to navigate.

Reaching for anything that might help

By now you’re experiencing all kinds of symptoms: IBS, forgetfulness, difficulty concentrating. You would do anything for some sleep. You’re snappy, you cry, you close down. You don’t recognise who you are.

‘Go and see your GP,’ someone says, as you struggle through another day of blinding headaches and stressful work, reaching for chocolate and coffee for a much-needed boost of energy. And eventually you do.

Because by now you are out of ideas. You can’t think straight, you can’t read a paragraph without forgetting what you’ve read, and the painkillers just don’t work. You’ve moved through paracetamol and ibuprofen, added in codeine, but nothing, absolutely nothing, is touching these flu-like symptoms and the constant pain.

At the fork in the road

The GP says it’s depression. Is it? You believe what they say and they sign you off work, but things just get worse, to the point where your boss calls and says, ‘This is not working for us and I’m sorry, we have to let you go.’ And you agree, because you’re a people pleaser and haven’t got the energy to argue your case.

Since your first symptoms life has passed you by, and you’re now three or four years into whatever is happening to you. It smashes your self-confidence, your self-esteem and your feelings of self-worth. Your relationships start to crack and flounder, and at its worst you are told:

• Pull yourself together
• Get an interest
• If you got a job you would feel better about yourself

At best you realise that this is not depression and it’s not normal. So you stop taking the pills, thinking that maybe the medication is to blame, but even then the aches, pains and lethargy don’t go away.

By this time your GP is no longer seeing you, just issuing repeat prescriptions, increasing doses and adding other medication. He is stumped too.

In medical terms you have what they call ‘medically unexplained symptoms’ or ‘MUS’. Then the referrals to consultants begin: neurology, gastroenterology, the mental health team, rheumatology. That’s if you are able to get up, get dressed and get to the hospital for the appointments.

The pressure mounts

Financially you are in the sewer. The banks, loan companies and debt collectors are knocking on the door. You’re scared, exhausted and completely defeated. Then one of the consultants suggests fibromyalgia or CFS/ME. It’s tricky to identify and the symptoms are difficult to define, but you’re ticking many of the boxes, so let’s go with that diagnosis.

You’re not happy. Another label, can this really be true? You’ve read the leaflet and Googled what’s out there. It’s a chronic condition that will only get worse over time and you’re likely to end up in a wheelchair. The people on the forums say much worse is still to come and, more worryingly, no one knows why you get these chronic conditions that defeat you daily, hourly, minute by minute.

Eventually, five years in, or sooner if you’re lucky, you’re referred to the ME/CFS team. The one requirement is that you attend every appointment. Are they kidding? The clinic is miles away, places are limited and there’s a long waiting list of people just like you, waiting for a miracle. However hard you try, getting to a clinic so far away at a set time is not sustainable. By now you have no pride, no desire and nowhere left to turn. You’ve hit the wall, literally and figuratively.

Recovery is possible

Then, seemingly out of nowhere, you start to see emails and social media posts saying ‘recovery is possible’.

Your self-doubt and old worries get triggered. All those beliefs from childhood, the real worries and the imagined ones, come to the surface. But there is a spark of something that makes you reach out, wanting not just to survive but to thrive.

It’s a long journey as you peel your emotional onion, each layer showing a new truth and reviving old hurts, dysfunctional relationships and childhood traumas. But as you become more informed you change your relationship with yourself. Instead of just ‘thinking’ you start to ‘feel’, and with help and support you gradually climb the ladder to accepting events and yourself. Each time the pain returns you start to recognise the triggers, adapt and work through the emotional component. It takes time, sometimes years, to rebalance and redefine what makes you.

As your awareness and understanding grow, life starts to take shape. You shed the old and let in the new. Yes there is sadness, yes there is rage and yes there is avoidance. But these are all good, because finally you recognise that to live a life you need to feel and recognise emotions, both good and bad. It’s what you do with them and how you address them that will define your life going forward.

Life today

Strange as it may sound, I am glad I was given this opportunity to relearn and grow into a new life, one that is now full. I am fully recovered from fibromyalgia and CFS and approach life very differently, putting my health at the heart of my decision making. I retrained as a psychotherapist and have an online clinic that supports clients like me to recover from the emotional component of chronic pain associated with CFS/ME and fibromyalgia. Recovery is absolutely possible, but you have to allow vulnerability, openness and honesty into your life, and that includes telling your story just as I have today.

Carole’s live Q&A

Carole kindly shared her story in a live Q&A on the SIRPA Facebook page and answered viewers’ questions. You can watch the replay below.

Carole describes how years of unprocessed emotional pain gradually showed up as chronic physical symptoms that left her exhausted, misdiagnosed, and increasingly disconnected from her confidence, identity and daily life. She explains that discovering the mind‑body connection allowed her to unravel past trauma, rebuild emotional awareness, and ultimately fully recover, leading her to reshape her life and support others on their own healing journeys.

Join people who have found relief through the SIRPA approach to chronic pain.