Posts Tagged ‘cure’

Madam, I Have a Cure for Your Fibromyalgia, You Just Have to Wait 20-30 Years

Friday, July 4th, 2014

I had a meeting with the daftest, well meaning doctor I’ve ever met at pain clinic today. I met him after I met the nurse who listened while I described that my pain radiates from my spine like a cruel gnawing octopus, its tendrils creeping up and across my back making it feel on fire, irritated, poisoned; that my tender feet feel every bump on the pavement; that I’m so tired I drive the length of my street so that I can catch the bus; that my skin crawls at the thought of someone touching me or giving me a hug, that I can’t think of the words to speak when talking to people and find focussing hard, and that if she looks at the picture of the human form on the ‘how’s your pain’ questionnaire she would be hard pushed to find any area that’s NOT shaded to show where the pain is. She was great, patient, positive and concerned when I told her that I’m struggling with a decision of whether to reduce my working hours or not, unwilling to let go of the probable illusion that I’m somehow coping if I work full time. So, after I’d spoke to her she sent me back to the waiting room to see the doctor. If only she’d thrown in a description beyond his title, like ‘madly unrealistic’ or ‘never having suffered the kind of pain you suffer’. If she’d done that I would have braced myself.

He smiled and showed me in. His opening gambit was that there was ‘good news’, and that is that Fibromyalgia goes away in old age, NO old people have fibro….(throw caution to the wind there doc, not ‘some’ old people but NO old people). I was so blown away by this ‘fact’ that I said ‘Oh that’s nice for them’ (me not being old and finding the thought of waiting 30 years for a miracle seemed a bit less than ‘good news’). I said my mum has Fibro and he dismissed me, oh that must be ‘secondary’ fibro (which is clearly a totally different disease because an old person has it). He also told me I could think my way out of unbearable pain by thinking happy thoughts and that when I am exhausted and in bed at weekends so I can manage to stay in work in the week that all I actually need to do is ‘find’ my extra energy and it will come. I explained that whenever I ‘find’ extra energy I am actually borrowing it from the next day or day after. He shook his head like he’d heard the spoons theory and dismissed it as horse manure (when I read it, I thought ‘my god that’s my life – I certainly didn’t develop a set of symptoms to fit a theory I’d never heard of) and he said no, no, it doesn’t work like that…I told him he was wrong because that’s exactly how it works for me and I have been digging deep to find extra energy from a shrinking reserve for years and for the last 8 -12 months I have found that I can do less and less outside of work and even the things I enjoy, like my music, are difficult; that I can’t do a big trolley of shopping because I’m exhausted before the trolley is even filled, I can’t continue volunteering for Childline, I don’t go out visiting people, struggle with days out and actually struggle with staying in work now, which is horrifying because it makes me feel useful and makes an important contribution to our income and to my children’s role models, thinking of reducing my work time is an extreme decision for me. He said ‘what you need to do is think happy and then the pain will be less and the energy will be more’. I told him I have been thinking positive for many years in the face of increasing pain which was undiagnosed for most of those years, and that right now the drugs they give me are less effective than 2 years ago and I am in more pain, more often and am more exhausted and that a ‘cure’ of old age is no cure at all, if it’s 20 year away (and if it exists at all – but I didn’t say this). I also told him that when the pain was managed and the exhaustion was under control I am very happy, people would vouch for me, I am very positive without the hindrance of confusion, energy and too much pain. I am going to take him all the leaflets and booklets given to me by his colleague, the specialist who diagnosed me, who told me that there is no cure but lots of things can help (like medication, pacing, reducing stress). All those pamphlets (and the NHS website) say that Fibromyalgia is a condition without a cure, which may occasionally go into remission (not age dependent) but is progressive. The fact is, some people’s Fibromyalgia DOES go away when they’re older, but then again some women find it goes away when they’re pregnant, for so many others it stays and for unfortunate few it gets worse, and I hope I’m not one of those. gah. On the plus side, he did offer me the lignocane infusion. I am on a 3 month waiting list…pain clinic, where you get to wait and think about your pain for 3 months while your drs go on their summer holibobs (yep, that’s what I was told). In the spirit of being fair(ish) I did some research of my own tonight and found this article which is clear that age is not the miracle panacea he would have me believe.