Thank you to Jane for her interview, here is her story
Where does your story begin and what were the symptoms that concerned you prompting you to see your GP?
It was ten years ago and during a very stressful time in my life, I was in my fifty’s and had been a carer for my mother for most of my adult life. She had M.E. and was diagnosed with terminal cancer which was such a shock. When she passed away I was devastated and exhausted and I could no longer keep up my part time job as a cleaner. There was a financial pressure on me and I became so low and wiped out with the stress. I felt so tired and pain all over my body I could barely get out of bed so eventually I forced myself to go to my doctor, I thought I had the same as my mother. Unfortunately it was not my usual doctor and I found it very difficult to get my concerns across and I was told it was all to be expected and to get plenty of rest and was prescribed a sleeping pill and to come back in a month. The pills were benzodiazepines which just made me feel even more groggy. I managed to get to another appointment with my doctor who knew me better and I was referred to rheumatology. This took months and I then had to wait for the results, I don’t even know what they were testing me for, it was really worrying as I thought I had something like cancer. When I got the test back there was nothing abnormal and I was told it was fibromyalgia which I hadn’t even heard of. I was terrified it was going to get worse and I’d end up in hospital and there would be no-one at home to look after my canaries, my little birds are my only comfort. I was prescribed some pills but I can’t remember what they were now, all I remember is feeling so ill, dizzy, blurred vision and I couldn’t even read, I had chest pain which frightened the life out of me and began to have panic attacks, I was in a real mess.
Out of 10 being the highest what level of stress and anxiety did this cause you and how did your diagnosis impact on family / friends / work / social ?
I think at the time I did not realize how stressed I was, probably a ten, I’d already given up my job and I don’t have family near by, I’m not one who needs other people but I felt extremely isolated, almost abandoned.
Did receiving a diagnosis of fibromyalgia help to turn things around for you to help you find a way forward or did it create a debilitating label for you?
Both, I was relieved to find out what was going wrong in my body and that there was a name for it but back then there was very little information so it just gave me a label and for a while it was so frightening for me, not knowing what to do, that was debilitating. I hope it’s better for people nowadays.
What were your symptoms?
Pain in my neck, shoulders, my chest, arms and hands, all over really, lack of energy and not sleeping sleep, I just couldn’t switch my head off. All I could hear was tinnitus, I had really bad blurry vision, dizzy, confusion and a foggy brain, anxiety, panic attacks, headaches and irritable bowel.
Can you describe the pain?
Sometimes it was an overall ache and throbbing and also unbearable stinging sort of burning and my skin was so sensitive even my clothes hurt.
Were you prescribed any medication for fibromyalgia, anxiety etc., and did they cause side effects? Were you referred for any type of treatment?
Over time I’ve been prescribed several different medications for pain, nerve pain blockers, opiates etc. and now I only take anti-depressants but I wasn’t referred for any treatment. I put on a lot of weight and just felt so groggy, I can remember spending so much time crying and phoning a few friends but they didn’t really understand, they still don’t and that was the worst bit, feeling no one understood, including my doctor at the time. It was a horrible time as there I was with this awful disease with no cure or explanation.
At which time were you given any information explaining Fibromyalgia Syndrome and referred to the NHS Persistent Pain Clinic?
I didn’t know there was a pain clinic and the only information was a leaflet from hospital.
Since receiving your fibromyalgia diagnosis and now to the present day has it caused you to make significant changes in your life and how has this affected you and those close to you?
Big changes, YES! but it took a long time. I managed to get my medications under control and in 2015 I had counselling which helped me with my grief and anxiety and I started feeling like going out a bit more. I got a lap top and had lessons so I was able to find out a bit more about fibromyalgia but it was very confusing. I joined a few online groups but ended up feeling even more confused and isolated and last year I seen an advert for the clinic in Barnstaple and phoned them. It was such a relief to find out that I wasn’t mad and I learned so much and felt so relieved I was not on my own. I’m now back at work part time working as a carer to an elderly woman and I can just about manage a bit of cleaning and shopping for her. I still have worries about my finances and have received a lot of help from the citizens advice.
What steps have you taken to cope with the changes in your life?
Bit by bit I’ve managed to cope but there are days when the pain is so bad I just want to curl up and die but I keep going, I think that’s what gets me through is that I have to keep going as nobody else is going to do it for me. I’m managing my job just about and learning the breathing and relaxation with Jok has been a great help but I’m not into meditation and that stuff.
Have you made any changes to your diet and lifestyle?
I’ve tried cutting out stuff and eating so much sugary foods in my diet, I love cake too much, it’s now my treat now and again and that has helped me lose a few pounds but I can’t say it has relieved my symptoms, early days I suppose. Walking has helped the best, I make myself walk most days and at the fibro clinic I’ve learned to set goals and plan to join a walking group which is a huge step for me because of my anxieties, I’m not very good at meeting new people.
Have your symptoms changed since your diagnosis and if so in what way?
I ‘m not sure, some days are worse than others but I seem to cope better, I think getting over the shock of why this happened to me and the isolation. I still get very anxious when I get a flare-up because I worry that it won’t stop and I’ll be in this pain forever. I’ve been off pain killers for almost a year and feel I have more energy so I do a lot more and then I suffer big time.
What do you do to manage your symptoms and flare-ups? Do you take supplements?
I try to rest when I can and still do my breathing exercises, they’re the best and walking when I can or I phone Jok at the clinic for reassurance. I can’t afford supplements.
What type of support do you have?
I have a good doctor now who understands Fibromyalgia and I’ve met a few other ladies who have it and that’s what’s really helped, sharing experiences and not feeling that I am mad or making it up. I’m not keen on support groups and being with lots of people so I make do, it’s good to know that it’s there if I’m desperate.
Have you noticed changes in your sensitivity to environmental or emotional triggers such as noise, light, smell, stress, or certain foods and chemicals?
Definitely more sensitive to noise and stress levels go through the roof and I can feel very emotional for no reason but at least now I know why this happens and I’m not going mad.
Do you feel that in general people understand the daily challenges you have to face living with fibromyalgia or judge you?
I certainly feel at times I am being judged and that I’m making it up. I don’t tell many people that I’ve got it or what I have to go through, it’s easier that way but at the same time I want to tell people how awful it can be and then I feel guilty like I’m looking for pity. I go through a lot of guilt feelings and hate the thought of being labelled as chronically ill, I hate that name.
What is the worst aspect of living with fibromyalgia?
It’s because it’s so unpredictable, like turning on a switch. You wake up and you don’t know how much pain you’re going to have or if you’re going to have a brain or not, or if you can make it through the day. It’s like having no control over your body and feeling guilty about letting yourself and others down, then I get depressed about it. I’m frightened of being depressed again, it is like being in hell and feel for anyone who suffers with depression.
Has having fibromyalgia and having to live with an invisible illness made you more mind – body aware, giving you a deeper connection with your body and emotional state? Would you describe this as a good or a ad thing?
Both in a good and a bad way. I’ve not seen it called an invisible illness before but that’s exactly what it is because I still look the same to everyone else. I suppose I do pay more attention to my body when I’m in pain but not in a good way because it just makes me worry and panic.
Do you have any Top Tips you would like to share?
Keep moving, even if it hurts, go for a walk, do the breathing exercises and take it one day at a time, don’t let it beat you. I really hope my story will be of help to someone and reassure them that despite the fight that you can come out the other side, all the best to all you fibro fighters.