I was diagnosed with fibromyalgia about 13 years ago, but I believe I have had it for nearly twenty years. Back then GP’s did not know or understand what fibromyalgia was and I did the rounds of GP’s, specialists, physios, chiros and massage therapists who constantly mentioned how tight my muscles were, but told me there was nothing wrong. I wasn’t really in pain… but of course I was.
I was finally diagnosed when a physio gave me a copy of a page out of a book about fibromyalgia.
I immediately went home and looked it up on the internet, and found my problem. I made an appointment at a GP and took the piece of paper with me and shoved it under his nose and said “I have this”. He said ok and gave me a prescription for Endep. He told me that it could take up to six weeks to work.
Three days later I woke up very late on a Saturday. It was the first time in I don’t know how many years I slept in and amazingly I did not hurt. I will never, never forget the amazement. Wow I didn’t hurt!
Thirteen years down the track and things have changed. Of course, as we know medication does not solve or last with chronic pain and my pain came back. The drugs increased and changed over the years until last year when I was fortunate enough to attend the pain clinic at St. Vincent’s in Melbourne. I now live with no pain medication, I pace, I don’t do as much and I love to colour mandalas.
What is it like for me to live with chronic pain? It’s hard! I have had it for so long now I really don’t remember what it was like not to have pain, also my pain came on slowly. There was no accident or sudden illness, it just crept up on me. I am constantly learning how to live with this pain that changes and evolves. Taking more and more medication and then realising it was not working. Going off the medication and going through the withdrawals and now learning how to live without medication.
Why do I want to tell my story? Since attending the pain clinic I have come to a realisation I want to help others. I am fortunate. I can still work, I have an amazingly supportive family and a small, but tightknit group of amazingly supportive friends. I would not be without any of them.
Because of my amazing support network I can keep going, but I have days when I don’t want to get out of bed, days when I don’t want to go to work and days (like today) when I come home and just throw my arms around my husband and he hugs me. There are also good days, like the day I walked into my home office to see that my daughter had put little post it notes all over my desk with positive affirmations on them. It was awesome! The odd text at the right time from a friend never goes astray either.
I also suffer depression and anxiety which I am told is common in people with fibromyalgia. In the past I have never wanted any one to know that I have these conditions, I have been afraid that it would make people see me differently and maybe even affect my chances of gaining employment, but in the last year my thoughts of this have changed.
Suffering from two such stigmatised illnesses has made me realise the importance of talking about it. After all if I was a diabetic no one would think twice about it. I need to share and help others and if sharing my story can help then I want to do it.
Very recently I was watching an episode of Criminal Minds. One character asked another to do an internet search on “controversial” illnesses. The first one he mentioned was fibromyalgia. It’s not controversial, it’s real and many people live with it and do so successfully. I want people to know that. I have been told my story is interesting because I have been through it all, from being unbelieved and fighting for a diagnoses, all the medication and then finally coming off it.
I am 49, married, have two children in their 20’s. I work 4 days per week as a VET trainer and I’m currently undertaking a PhD in education. With my husband I own 7 dingoes and 4 cats. I suffer from fibromyalgia, depression and anxiety, but that is only part of who I am, not all of who I am. I am not my pain.