George

Age at interview: 64

Age at diagnosis: 50

Brief Outline:

After experiencing pain for several years, George was diagnosed with fibromyalgia around 2005. His advice to other people with fibromyalgia would be to find a support group or doctor who will understand what it is like to live with this condition.

Background:

George is 64 and divorced. He retired early due to his health conditions.

More about me...

George started experiencing pain, headaches, tiredness and forgetfulness around twenty years ago while working. He made several trips to the GP and was prescribed painkillers. However, he did not feel that the painkillers helped with the symptoms, and he eventually experienced breathing problems. After undergoing a lung test and sharing his symptoms with a doctor at the hospital, he was informed that it was likely a musculoskeletal condition. At a subsequent appointment with a rheumatologist, George was diagnosed with fibromyalgia.

George suffers from other conditions such as Myasthenia Gravis, asthma and diabetes. He has also experienced post-traumatic stress as a result of his brother’s suicide. His symptoms change daily and can negatively affect each other, making it difficult for him to manage his conditions.

George has tried lots of different medications with limited success. He attended a pain management course, and also went to laughter therapy. Although he was initially sceptical, he found this beneficial. He saw two occupational therapists who organised adjustments to his bathroom and physical aids. For about twelve years, he has been getting acupuncture which reduces his pain but has become increasingly difficult to access on the NHS. George has found that giving up alcohol has helped him personally.

Fibromyalgia has negatively impacted George’s life. He has had to give up his work, as well as hobbies such as swimming, which he loved to do. After observing that he can get “sharp and short” with people, he gave up volunteering at a local charity. George has also given up on dating over the years as he feels it would not last.

George feels that others, including healthcare professionals, often fail to see fibromyalgia as a real condition, or understand the impact of it on people’s lives. He feels very let down by the benefits system. He thinks assessors lack information on the condition, resulting in people not being able to access the support that they need and should be entitled to.

Though his symptoms have gradually become worse, George feels more in control of managing his condition than in earlier years. His dog has been a “live saver”. Walking his dog helps him to cope during difficult times although he needs to use his walking stick and crutch all the time to stay mobile. George also credits his sense of humour with helping him to keep going. He is very close to his three sisters who live nearby and support him with household tasks like food preparation. He also pays privately for help with cleaning and gardening. Having a car enables him to stay more independent.

George attends a support group for people with fibromyalgia and finds this a positive and uplifting experience – he enjoys having a laugh with people in a similar situation. He states that “…we’re like one big family in a way”. His advice to other people with fibromyalgia would be to find a support group or doctor who will understand what they are going through.

George describes experiencing pain in various places in his body, along with headaches, tiredness and forgetfulness.

I first noticed symptoms of fibromyalgia, which I didn’t know what it was, as far back as 2000. I was working as a welder and I was getting all these pains in various places of my body and getting headaches, tiredness, forgetfulness, I didn’t know what it was.

I was back and forward to the surgery, yes, the local GP, they gave me different [points to side] I forget what you call it, different reasons for this and different reasons for that, but it was, nobody gave me anything. They gave me painkillers and different things, nothing was working until one day I couldn’t breathe.

Well the pain, but not knowing what it was I was very curious to see what was causing it, because initially I couldn’t get breath, so I was taking the asthma inhalers and I was getting awful pains just [uses finger to gesture] between the base of my neck to the middle of my spine, you breathe out, “Oh”, never thinking it would be musculoskeletal.

George feels that some doctors are not knowledgeable about fibromyalgia.

[My GP] was quite up yeah, he’s a good doctor, really, really good into thing, [nationality] man. He was quite, what would you say, knowledgeable about the condition, he’d, he knew, he’d heard about it and all this or whatever, he, he kind of knew it wasn’t accepted by the kind of British Medical Council or whatever you call them as such, but then he obviously did.

I sympathise with some doctors as well because they’re just not trained for it. I don’t know how. They would, they would all have to get together and have a decent kind of, or at least one or two higher up doctors from hospital could have a convention with other world doctors, and then they should explain and they could pass it on down the line to their own trainee doctors, whatever. And they don’t have to be a young doctor to do that. Obviously would find it interesting to find out what was what, but then again, “Oh, it doesn’t, it doesn’t”, but it does, it’s there, by god there’s too much people got it for it not to be there. It’s, it’s just a stinker.

George learnt a lot from an 8 week course at the pain clinic – “it’s fantastic for what you get.”

There is other versions, painkillers, different exercises. I did the pain group, there was a course there for eight weeks, a day, one day a week for eight weeks and, I benefited from it as well, so. It is very helpful what they do, but underneath everything that damn fibromyalgia is still there.

… a course from the pain clinic with various exercises, press ups, medicine balls, balancing, just all this things. And there was a different thing week by week, so there was also like a bit of a lecture, [points] yes, there was like seven of you, right, there was about 20 people split into groups, [gestures with hands] two sevens and one six. So one OT had them [points to the left], one OT had them [points to the right] and they were, and then over a week you had a shot at all these different, OTs.

So one was showing you films of different pains and whatever and that and the next thing, then there was exercises, various things, speaking about different treatments, experiencing different lectures. Overall it was a really good course for making you realise how your pain originated to a point, but they could never actually just pinpoint bang on what it was. But it was about coping with it, certain drugs, ways to kind of cook certain foods, [gestures with hands] certain foods to eat, which was good for you, which wasn’t, like believe it or not I’ve got oranges there that I shouldn’t have because that can fire up fibro, but I only take [points] one like every second day rather than one every day like I was.

What else? Just a, a range of different things. So it was, it was quite an intense kind of course. And I now believe there’s something like a three year waiting list to get on it [shakes head], it’s fantastic for what you get.

George went to laughter therapy. Although he was initially sceptical, he found this beneficial.

You can’t, you’ve got to have a bit of a sense of humour as well with, with this because [shakes head] if you couldn’t laugh you’d certainly cry, that’s how bad. I mean even like when we go to the group, we’re all sitting there with long faces, most of you know, we are, that’s just the way it is, and we’ll have something, we’ll have a bit of a laugh. We had a laughter therapy and I’m thinking, “Oh, this is going to be a load of rubbish”, so I sat, it’s a professional laugh, laughter, thingy, now I start and 15 minutes I’ve said, “I’m not going to laugh”, but once [smiles] they, the people start laughing it’s infectious, and good god, I never felt so happy in all my life, oh, yes, it was fun. They couldn’t stop laughing after but what we were laughing at we don’t know, but it works, [points to side] it works.

So there’s a lot of weird and wonderful, not cures, but things that can relieve the pain a bit and cheer people up and just different things.

George was impressed at the speed at which he got some modifications sorted for his bathroom.

The council one is [points to side] the one that can get you every, the things yeah, that’s them definitely. So they are the medical ones in [the nearby town], and the council ones, I think I got a number from somebody to phone basically. I did, [nods head] and they were quick off the mark, really good, because I got that, I got that, raised toilet and wet room six weeks from, from enquiring about it approximately. What a difference that made, I used, had to come out the bath, [gestures with hand] roll on to the floor and every time I did, my back was going, “Oh, oh, oh”, but now just straight in, I’ve got a stool, I can sit down in the shower and just whatever, it’s good.

George feels that benefits assessors just don’t understand what it’s like to have fibromyalgia.

And the thing, another thing that doesn’t help you very much is the benefit system. When these people that, interview you for PIP and things like that, sadly they’re called health professionals, well I’m afraid they’re biggest lot of amateurs I’ve ever, ever met in my life. They have no idea what they’re speaking about. All they want is their £300 they get for getting people off PIP.

I’m really bitter about this, so is a lot of other people. If only it was real professionals like namely, our doctors and the specialists in hospital. The government should be listening to them what they say because they are the real people that understand the illness. And then even then they are still learning every day.

Can you tell me a bit about this process you know, with the benefit?  So …

Well for instance, a lot of people used to be [points to side] that was it for life, this isn’t a curable, condition, so why every two year do people have to go through this absolute stupidity to prove that they’re still ill? Surely with going on with the doctor and that, okay, you do get people that cheat, but I can guarantee you can hardly cheat with fibro, it is one of these things that is absolutely a stinker to have, and I wish these people would understand it, because when people go to get interviewed for their, reconsideration or whatever you call it, they’re obviously nervous, they’re like this, and this, there’s a, depression is part of this illness as well. Well these amateurs do not have a clue, the damage they are doing to people, not just the people that’s got it but the family as well, it’s ridiculous.

George finds it difficult to plan ahead and this can cause arguments with his friends.

It’s, that’s basically the thing, it’s so variable, that’s why, my friend’ll say to me, “Oh, you want to come fishing say on Thursday?” I say, “Oh, yes, fine”, Thursday morning he turns up, “No, not feeling”, “Oh, you”, I say, “Don’t start”, it causes a lot of arguments you know, but there you go, that kind of thing, you cannot plan ahead.