Posts Tagged ‘fibromyalgia’

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.

And Finally…

Wednesday, February 1st, 2012

Yes, so I’ve been away for a bit. I had to make some hard decisions about what I can do with my energies and blogging sort of came bottom. I’m not promising to do better.

I’ve had a bit of a breakthrough and I thought I’d share. After years of dreadful, mysterious and downright annoying symptoms the doctors finally decided to look at the whole instead of each individual symptom. Novel. I’ve been sent to this specialist and that specialist only to be told ‘no it’s not X’ or ‘definitely not Y’ but never being told what was actually wrong. Symptoms ranging from stomach and bowel problems, hair loss, painful joints, exhausted and sore muscles, feet that can’t cope with shoes or duvet covers, hands that need to soak in warm water because they’re too painful to touch, a feeling of being poisoned, a feeling of being windswept/overexposed, dry skin, headaches, nausea, well….the list goes on and on. It doesn’t always come at once, i get waves of feeling dreadful and get slight improvements, never back to my carefree days and then the dread feeling of the wave of greater illness coming on.

‘What’s wrong with you?’

Well, there are things i know that are wrong. A facet joint damage caused by a nasty car accident which took a couple of years to get over at the time but has never given me a day off work but does give me continuous pain. I also have a leg length differential which went on undiagnosed for long enough to start me on a path of osteoarthritis in my hip. I now have a cyst on that hip bone and am waiting for a replacement. But the other stuff, what could I say? ‘I feel ill’ ‘I’m exhausted’ ‘It hurts when you touch me’, it doesn’t really cut it for me and it doesn’t satisfy other people. I’ve often felt that people think I must be a bit of a hypochondriac, complaining of problems but never being able to say more than ‘joint pain’. I’ve recently found out that there is a recognised phenomenon of feelings associated with Medically Unexplained Symptoms (MUS) directly related to other people’s perceptions of those symptoms. How can they be real if they don’t have a name?  I can assure you that those symptoms for me, and many others, are very real and have a huge impact on daily life.

Finally though I went to see a Rheumatologist who listed, looked, read my notes, asked questions, and then delivered not only a diagnosis but also a plan of action. The diagnosis was dependant on other diseases/syndromes being  ruled out by blood test. I went home and waited. Last week I came home from a busy busy day and sat completely wasted on the sofa, I carelessly opened my letters and glanced at a letter, another appointment for another Doctor I thought but no, it was THE letter. The specialist had gone to the trouble of not only giving me that diagnosis but listing all my other problems. I have multiple issues requiring an holistic approach to help me.  I have Fibroymalgia Syndrome, Chronic Facet Joint Syndrome, Leg Length Discrepancy, Right Hip Osteoarthritis requiring full Hip Replacement. I’m using capital letters, these are my enemies and they now have names and I respect them.

Fibromyalgia has been mentioned to me before but the list of symptoms seemed so horrendous I didn’t want it to be me. When I found it it was me I smiled, I cried a bit and felt completely relieved and finally felt recognised. The plan is to go to a Pain Clinic to assess my drug regime and see if anything further or different might help. I’ll also be given a physio plan designed to get me as fit as possible before my hip replacement after the summer holidays. My difficulties now are that I feel shattered walking to the bus stop, having to stop and assess my pain even on this short route and I pay for that walk all day. I fell very badly last christmas thanks to the hip and damaged my shoulder’s rotator cuff and a/c joint, this makes it very painful to use my walking stick and I’m worried about how I’ll cope taking all my weight off my hip. I’m hoping this physio will help with that.

Someone said to me, not long ago, when I was feeling extremely unwell, that I should give up my music and concentrate on work.  Why should I? You aren’t forced to chose a life of no fun/creativity and work yourself into an early grave, and I won’t take that path either. Money is important, work is vital for the family and for my wellbeing and while I can work I’m going to carry on,  but it’s not the be all and end all. At the moment I can only stay working full time by basically doing little or no house work and very little cooking. My amazing family supports me so that I can stay in work. I’d love to work part time and maybe improve my quality of life, reduce my pain etc but there’s no chance of getting higher DLA in the current climate which means I’ve got to continue grinding myself into the ground. Doing something pleasurable like music enables me to feel that it’s worth it.  Even so, one 25 minute gig leaves me feeling like I’ve squashed in an extra day’s work and I’m not sure I can keep up the balance, because it isn’t really balancing out. I hope the pain clinic can help that.

The current debate and plans for welfare reform horrify me. Not just for myself but for all people who are in unfortunate, vulnerable, weak or disabled circumstances. No one chooses to be made redundant, disabled, the parent of a disabled child, a vulnerable person, etc. No one wishes to be in a position where they’re unable to move out of house that’s too big due to housing shortages but unable to rent the spare room out due to threats of being criminalised. People don’t chose to give up work due to increasing illness as ‘lifestyle choice’ they do so because it’s Hobson’s Choice.  I feel very lucky that I can still drag myself in on my bad days, because I cling on to the knowledge that I can spend 48hrs in bed at the weekend if I need to. When the cost of my week in work exceeds the compensation of 48 hours in bed at the weekend then I will have to take stock again. I’m not asking for anyone to feel sorry for me but I have paid into the system that’s supposed to protect me and others in these circumstances. I need to know that if I can’t continue to work full time I’ll be supported to continue to work for as long as I can, as much as I can by a welfare system that is there to help me.