Many of my clients live daily with fibromyalgia. It's a much misunderstood illness and today we have a valuable insight into the world of one client who lives with this condition. It's important to note that although there is mixed evidence about the effect of exercise on improving this condition, many fibromyalgia sufferers rely on regular exercise routines to lift mood and alleviate their pain and stiffness.
First, here is a brief description of fibromyalgia from The Mighty, "Fibromyalgia is a chronic illness that affects about 3 to 6 percent of the general population. Though it’s still not well understood, fibromyalgia seems to be caused in large part due to an overly active nervous system that keeps you in fight-or-flight mode. Your system isn’t designed to stay “keyed up” like this for long amounts of time, which leads to a variety of fibromyalgia symptoms. While fibromyalgia is a serious illness without a cure, it does not lead to heart attack, stroke, cancer or physical deformities. As debilitating as the condition can be, it is not fatal.
The three most common symptoms of fibromyalgia are:
You may also experience other symptoms such as digestive trouble, bladder issues and temperature and sensory sensitivity. It’s also possible to have other conditions in addition, including autoimmune disorders and mental illness."
Here is a week in the life of a person with fibromyalgia. I'm grateful to this client for her raw and honest description of what often appears to be an invisible illness.
Monday 3rd June
Matthew's been off school today which necessitated a morning in the doctors surgery and sorting prescriptions; the rest of the day looking after everyone. I do my exercises at night spending more time on my shoulders. I am delighted that the hard knot of discomfort in my right shoulder seems to have gone. I feel almost addicted to lying on my back with a rolled up towel under my bra strap then the release of removing the towel and sinking into the floor. Later that night I nod off on the sofa as usual as I am so tired. By this time the usual euphoria of stretching my sore body has been replaced with a feelings of pain and stiffness. I take my night time supplements of Night Time 5-HTP with melatonin to help me sleep, magnesium to reduce aches and pains and B vitamins for energy. I'm about a month in on these and I feel a slight overall improvement. As I go to bed though a nagging doubt crosses my mind as to whether sleep will come tonight. I feel slightly restless and uneasy. In short it doesn't - by 3 am I feel like I have done ten rounds. My muscles ache and my head spins. I am sill awake when Matthew comes in a little later, he too it seems cannot sleep though his pain seems justified whereas mine doesn't. I comfort him and go downstairs for his medicine and a drink. When I take it up to him he asks me if I'm ok. The room has started to spin and it feels like all my blood has drained out of me. It's like I'm about to pass out. I manage to check he's ok and return to bed before I drop.
The alarm cruelly awakes me from what feels like an hour of sleep. I cannot move, everything hurts like hell. I hold back tears as I try to calmly wake Amber then ask Matthew how he feels. He's unsure, I decide he needs so much more help to get to school that another day off won't hurt, he's ahead of most of his class. I cannot face showering under what seems a violent and scalding gush of water and tearfully ask Innes for coffee and paracetamol. I won't go back to pregabalin. The constant feeling of increased appetite (& weight gain), cotton wool head and constipation along with lucid dreams and blurred vision is enough not to. Coming off these almost required admission into a drugs rehab clinic - horrific insomnia, night sweats, upset tummy and feeling like a zombie were more than enough. Later I manage to make Amber's packed lunch and have breakfast with her. All thoughts of doing the 5:2 diet have to be put aside. I know today will not be about good food choices as I will crave carbs and sugar to get me through. I am envious of Matthew, he sleeps calmly and quietly until 11.45. His little body must have needed it. Why can't I do this? I feel useless sitting around all day hoping to feel better - doing nothing significant or satisfying. The day is warm and sunny I should be out there but my body is leaden. I manage out later to sit outside and feel some warm sun on my face. As I walk back up the garden I notice with horror that the small creature I see on the lawn is in fact a rat tucking into the sunflower hearts I religiously put out for the birds. Our large garden has always been a peaceful refuge from everything that has ever been wrong. We have to have help with it. My initial hopes of spending days digging and planting faded pretty quickly. Even walking up and down with tools is enough to exhaust me though I have enjoyed months of encouraging and watching all manner of little birds including a magnificent woodpecker and a playful squirrel. Now in one moment the garden feels threatening and unsafe - diseased and dirty. I know that now that my anxiety will kick in. It eats away at me constantly about one thing or another and feels like a physical millstone around my neck that I am unable to shake off. Sure enough Innes later berates me for analysing the whys and wherefores of the rats appearance. I do my exercises halfheartedly but it is nevertheless a box ticked today - it is enough, it is done.
Sleep still feels unavailable, like a closed book the - magic recipe unknown. I am chronically exhausted. My eyes feel like sandpaper. The shower seems slightly more soothing, I have beaten it by remembering to increase the waterflow. Today though will be good - positive mindset. I will cover my drained white face and conceal the black bags under my eyes and take pleasure in the small things like choosing something nice to wear. I go to volunteer at the charity shop. Everyone has their reasons for working there whether it be for company, to feel useful or to feel normal. There is a sense of camaraderie, lots of the ladies are like me and right now it is the closest I feel I will be to working. Remembering the feeling of being able to do something well, I spend my time making the clothes look good. Later I am forced to sit and relax while I have my hair cut. This must have done me good as later when the children are sitting quietly I am able to exercise. I normally go up to our room and shut the door but as Innes is working away I want to be near to the children. I put on some music and stretch out in the space at the bottom of our stairs. It is the perfect size to exercise. I enjoy the feeling of working through the exercises and feel relaxed and invigorated. It is the feeling of doing something - anything to improve and feel better. It doesn't always feel this good. Sleep comes in a manner and I manage a few hours.
I meet a friend for coffee. I feel like an elderly lady today as my knees ache with every step - I feel convinced I have arthritis. It's like a cruel joke, each day I get up hoping for a good day then find there will always be a part of my body that will hurt. Usually everything is always worse after sitting down which doesn't help. By early afternoon I am putting away shopping and I feel unable to get on with any of the chores I had planned to do. I feel disappointed in myself. I simply do not have any more energy to do anything. My head hurts and my brain is foggy. One of my other wretched symptoms is my hands. Usually it's worst first thing, they basically feel fat and swollen but look normal and all my rings fit. This last week the joints have also ached and I have frequent pins and needles. I don't exercise tonight. Instead Innes and I take down all the bird feeders in the garden and I read posts about other people who have been visited by rats. A common connection is that, like me, a lot of people with chronic conditions can't be outside as much as they would like and take great pleasure in caring for their feathered friends. I almost found myself starting to bubble as I explained to the kind pest control man that I didn't have a pet and how much I'd enjoyed feeding the birds and that I am now frightened to go into the greenhouse! As I go to bed I wondered how I will sleep. My headache is going down into my neck and has bothered me most of the day despite pain relief.
The sun is shining. My anxiety still plagues me about the garden and the birds are looking for food. I decide to wash my hair although it probably doesn't need it and I find it tiring. My appearance has always mattered to me and I don't want to look ill. This though is double edged as people assume because you don't look ill there is nothing wrong and possibly think you are just lazy or making it up. I just happen to be a morning person and like make-up. I also epilate my legs. I have found over the years that this is the best option, cheaper and less taxing than going for a waxing and no stubble from shaving. I've got used to the pain. I have tender points all over my body. Two of them are on the inside of my ankles and inside of my knees. I go for a walk wanting to enjoy some sun and stretch my sore legs. I can't power walk anymore. I have come to realise, following a recent trip to the physiotherapist, that I have lost the ability to stand on my right tiptoe after my prolapsed disc which I why I start to limp after walking a short distance and find it tiring. It also explains why climbing up and down stairs is awkward. I discuss this with Susie later along with my symptoms and she recommends stretching everything out for my session today. It feels good and provides some relief. I decide tonight that enough is enough and just before bed take a sleeping tablet. I still have still have some prescribed by my doctor at Christmas time. Awful insomnia was the last legacy of coming off Pregabalin and it allowed me to re-establish my sleeping pattern to some kind or normality.
I manage 6 hours sleep then turn over for another 2. I feel calmer and more relaxed and pain levels are reduced. I spend a pleasant morning in the garden with Amber and Innes tidies up and cuts the grass. We all go to Dundee in the afternoon. By 8.30 though my joints ache quite badly especially hips, knees and ankles. Sleep is ok although I wake several times.
After lying awake at 5 am for some time I manage a few more hours and we all have a lazy morning. I am feeling better in myself. We are due to have work done on the house and Innes and I clear out a large cupboard. I have to ask Innes to stretch down to empty it as my joints are too sore. Later I give the kids a foot spa which they love and massage their feet. I decide to do all my favourite exercises tonight and whilst uncomfortable at the start I loosen off and feel better.
Monday 10th June
I slept quite well, the sun is up and I actually feel fairly good. Interestingly my hands are much better. Could this be from massaging the kids feet and doing my own hands or is it because I am clawing back some sleep? I have also read that weather can affect fibro i.e when it's raining symptoms are worse. I have definitely had a flare up. I also think diet has played a role. Before last week I had several meals out and lots on. It's not the sort of plain home cooked food I would usually eat and with Innes having been away and feeling awful I have not made good choices. Today I am resuming 5:2 diet. I had started it a few weeks ago and lost 5lbs. I am showing a 3lb gain on the scales today. It is the easiest diet I have ever done and research shows it has been used with great success for fibro sufferers. The health benefits also appeal. My weight irks me constantly and with my birthday looming I owe it to myself and my health to give this diet a go.
My thanks to you for sharing these thoughts. If any dear readers would like to know more about managing aspects of fibromyalgia through exercise, please head over to the Making Change Stick Facebook group.