So, this is the bit I’ve been postponing – the queen of procrastination. Why? Because I’ve moved on and embraced the freedom Fibromyalgia has given me – but this, ‘My Fibromyalgia Story’ must be shared for two, very important, reasons. Firstly, it’s part of my journey; it defines who I am today. More importantly, it’s what connects us and, if I am to instil you with hope and positivity, we must share our agonies.
I cried when the consultant told me the “good news”: I didn’t have arthritis – it was ONLY Chronic Pain Syndrome (Fibromyalgia). Not from relief, I might add, but sheer and utter disappointment. You see my late grandmother had suffered from Rheumatoid Arthritis and, whilst fully aware of the torturous pain and suffering she had endured, I knew things could be done to restore my life to me, for a while, and that, with medical progress, my lot wouldn’t be as bad as hers. The consultant was furious with my reaction, as, in his view, my condition would not worsen and, once I’d sorted out what was in my head, I’d get better within three or four months. WRONG! My condition worsened over the coming year; so much so that I was frequently ‘plonked’ in a wheelchair if I went out with my able-bodied family members. My husband became obsessed with mobility scooters, stair-lifts were often mentioned, then, came the ‘career break’ from a job I loved and the ultimate question of ‘Disability’.
I desperately didn’t want to be classified as disabled but it seemed to be the only way to access the type of help and support I needed to get through daily life and find/maintain a way to work and earn money. Working became an obsession. How can I work? When can I work? What work could I do? How will I earn money? And all the time health professionals would tell me not to worry; I should focus on getting better first. Work, however, was essential to my self-esteem, which in turn was essential to my condition improving.
The problems associated with any type or level of disability since IDS’s reforms and austerity are sufficient for another blog, one I may get round to someday, and draw on a far wider scale than Fibromyalgia suffers. Therefore, to cut a very long story short: ESA ended so no form of disability support; I was told to apply for JSA – which was totally inappropriate as I was in no condition to seek full-time employment; so, I became self-employed based on working 3 hours a week. This was my first positive step to regaining some dignity and self-respect.
How did it all begin?
With hindsight, I had been having mini flare-ups for years. These were usually associated with migraines, which I now know had been brought on by pain that could not be relieved.
The major flare-up occurred in the summer of 2010. I seemed to stiffen throughout my whole body, had terrible trouble moving my neck even the smallest amount and had severe pain in my hips. My walk went from its usual purposeful glide to something resembling Quasimodo. The swan had become a sloth. Everything was an effort. My students began asking if I was ’alright.’ I could neither sit nor stand.
I consulted my usual physiotherapist. Each session I had with her left me in bed for a week. She recommended cranial osteopathy. Wonderful! Immediate relief – followed by a week of agony as my body returned itself to its former state. I now visited my GP as I was frequently taking time off work and, whilst waiting for appointments for x-rays and consultants and taking full doses of ibuprofen and paracetamol, consulted a chiropractor. This chiropractor also practiced neuro- linguistic programming. I suffered several sessions only to find the results were similar to the physiotherapist and osteopath. My GP now believed I had a serious problem with my hips and I was told not to move. I was still waiting for a consultant’s appointment. I had been off work so long that they referred me to an occupational therapist. While this was initially terrifying it was also the first time I was able to have regular, lengthy appointments with a medical consultant who took the time to evaluate my symptoms and their effects on my daily life. Finally, the condition of Fibromyalgia was properly considered.
It was my occupational therapist who first showed sympathy and an understanding of Fibromyalgia and, TOP TIP, recommended I request a second opinion from a different consultant. In fact, he even recommended consultants who he knew specialized in Fibromyalgia and related conditions. My GP agreed to refer me to my chosen specialist and, after very many weeks, I was seen by a different consultant. This consultant immediately diagnosed Fibromyalgia and took the time to explain the condition to me. Furthermore, contrary to the first, he believed I was motivated to improve my condition. Prior to this, however, my GP had begun following advice from the occupational therapist and first consultant and had prescribed an assortment of painkillers at their highest dosage and sleeping tablets. The sleeping tablets were a particular problem; I tried a few different varieties. No matter which variety I was using I felt as if I were in a battle zone whenever I got any sleep. Consequently, I woke, exhausted, somewhere around 11am and was totally useless until at least 1pm.
Perhaps here is a good place to discuss the issue of SLEEP. I’m sure you’ve already been told, countless times, that if you improve your sleep your Fibromyalgia symptoms will improve too. This is true! But once again, in practice, it is a vicious cycle few medical professionals seem to understand. At this point in my story I would wake every 10 – 20 minutes, so, to get enough rest, I would spend about 14 hours a day in bed. The longer you spend in bed, the less active you are; the less active you are, the more difficulty you have sleeping and the longer you spend in bed. This is the cycle. The answer: ANTIDEPRESSANTS, of course! Because, as I was told, ‘if you’re not depressed now, you soon will be,’ – oh, joy. The real answer is TIME, COMFORT, RELAXATION, PEACE and more TIME.
Another view of the fibro-sleep cycle is that pain disrupts sleep and lack of sleep causes pain. This is also true. Therefore, the PAIN must be addressed. Painkillers give some mild respite and look good on your medical records if you are still employed or on ESA. They imply your ‘trying everything to get better.’ Realistically and long-term, they don’t work. What’s more your mind becomes clouded and the fibro-fog is increased and prolonged through their continual use. Every fibro-sufferer I have ever spoken to, who has been able to regain some semblance of normal life, has said the same thing: at some point you will have to be brave enough to stop taking them. I completely stopped taking my painkillers in February 2015. Shortly afterwards I also stopped taking the antidepressant, fluoxetine. A huge benefit to this was that paracetamol etc. now worked on the odd occasion they were needed, as did migraine tablets. I immediately began sleeping better. I still woke frequently and experienced pain and stiffness during the early hours (2 – 4am) but the quality of sleep I was getting in between was much improved. As a result I started waking earlier and taking a short afternoon siesta.
I nearly forgot to mention the impact of attending Pain Management Clinics. My first clinic told me very little I didn’t already know, gave me a meditation cd and said I was welcome to join any of their groups who met every other month. This clinic was an hour’s drive away, and at this point I was unable to drive myself. But, just as with consultants, you don’t have to take the first option. My second consultant recommended a different clinic and after waiting more months my appointment arrived. This clinic was also over an hour’s drive away. Luckily, by now, I had purchased a car I was able to get in and out of, and drive, easily. This clinic was much more successful and after the initial consultation I had 6 one-to-one sessions, which I believe helped me to reduce my painkillers and take control of my condition. It really was a positive step towards the start line.
This brings me up-to-date, to a point where I have improved enough to develop my self-employed work and launch this blog. However, there is one more vitally important factor to my recovery. Having come to terms with the changes I needed to make in my life and a vague plan for the future, I found myself going round in circles and never making any real progress. A very good friend of mine recommended Paul McKenna’s book ‘Change Your Life in Seven Days’. This came at the perfect time for me, having had quite a long break from any form of alternative therapy and was the break through I needed to organise my plans.
If you haven’t already looked at the other posts, please do. This blog is intended to offer hope and practical advice based on my experiences.
I sincerely hope it helps you, even in a small way; as small steps are the start of huge leaps.
My very best wishes,