Martin

Age at interview: 46

Age at diagnosis: 28

Brief Outline:

Martin was diagnosed with fibromyalgia at 28/29. After some difficult years, he feels now better able to manage his symptoms. He regularly attends a pain support group. Martin is keen to raise awareness about fibromyalgia, including in men.

Background:

Martin is 46 and widowed. He is currently not in employment. Ethnicity: White Scottish.

More about me...

Martin’s symptoms started after being assaulted and robbed. He experienced pain that spread over his whole body, and he got more fatigued soon afterwards. He remembers falling asleep on the bus, during tea breaks and lunch times. His symptoms got so severe that he had to leave work. After several medical tests and appointments, he was diagnosed with fibromyalgia by his doctor. Martin remembers being given a piece of paper with ‘fibromyalgia’ written on it and being sent on his way.

 

Over the years, Martin has been prescribed various medications but had to stop some of them due to the side effects and an allergic reaction. He was hospitalised twice. After seeing a pain doctor two to three times, he was told that there is “nothing more I can do for you”. He now has a “good” GP who he regularly sees and listens to him. He thinks that healthcare services need to offer better, ongoing guidance and practical support on how to live better with this condition. Martin also finds it important that people can get reliable information about fibromyalgia.

 

Going through the benefit application process was “very stressful” for Martin and made his condition worse. Because proving his initial eligibility for benefits was difficult, he contacted the Citizen Advice Bureaux. Martin found their support helpful.

 

Martin explained that fibromyalgia affects your whole life. Daily activities such as doing housework can be a struggle. He did not only have to give up work but also his photography. Martin lost social contact with workmates and “feeling part of something”. He also thinks that having fibromyalgia makes it more difficult to meet a partner.

 

Martin regularly attends his local pain support group because they provide lots of useful information. The meetings help him to get out of the house and to catch up with friends. He also keeps in touch with friends via social media. He would advise newly diagnosed people to reach out and connect with people.

Martin started noticing symptoms around the time he was assaulted and robbed.

Well it first started, I’m not entirely sure, but it could, it was probably in the 1990s, the mid-1990s. Originally I was assaulted and robbed, and that was in the ‘90s, and I would say my pain started on my back. As I was working at the time and I was finding it more difficult to do my job, and I kept going for years with my pain and fatigue, well it was mostly the pain to start with, then I was finding myself really tired. I’d be going to work on the bus sleeping, on my tea break I’d be sleeping, lunch hour sleeping, in pain, by the time I got home and had something to eat I would be in bed, and I would say that lasted for about two years. Then I was struggling at work, then there was just one day I couldn’t go back to work. If I went back another day I would’ve had a breakdown or something. And it was then, it was about 1999 I think that I went to the doctor, and then he diagnosed me with, well I think it was my GP, when all he did was write it down on a bit of paper “fibromyalgia” and sent me on my way.

Martin said that for him, the side effects were worse than “what help it did do.” He describes suffering a bad reaction a painkiller.

So I was going back then, then I just couldn’t work anymore, and then for the next six months I was just totally sort of bedridden, and it was this much, not much more they could do apart from painkillers. I think that was about the start of it. What else?

That’s alright. So, what happened afterwards? So you received the diagnosis?

Yes.

What happened afterwards?

To start with they put me on antidepressive tablets, amitriptyline, just a low dose, that’s the sort of standard treatment they put people on to start with, but it didn’t help. The side effects was worse than what help it did do and I was just getting just paracetamols, then, so it was just a case of left me alone to get on with it. I was seeing my GP maybe every month, then I was still on the books for my, where I worked, but eventually after my time run out, six months, or, I had to leave my work.

It’s difficult to say what, what more they can do because it’s difficult to treat chronic pain. And I think they maybe did try some different painkillers, which the side effects. There was one painkiller I got, which I ended up in hospital because I took an allergic reaction to it for my liver, and it was quite bad and I spent about a week in hospital and I got jaundice. So that, so I kind of limited to what painkillers, and I took me a long time to recover from that.

Not being able to work has affected Martin’s social life and he’s unable to do as much photography as he used to.

Another thing about not being able to work, you lose that social contact with your workmates, and you did sort of keep in contact with them to begin with, but then you lost because there’s days that you’re not able to meet up. And that’s another thing about friends, can, you can lose friends through not being able to do things, and you’re not able to go out and do things like going to see say just ordinary things like out for drinks or to see bands or the cinema, or. Then you kind of feel like they stop asking you, so “Well he’s not going to go”.

Yeah, that’s impacted, yeah, that impacts your life, not being able to do hobbies, so I did do photography, astronomy, but I haven’t really been able to do much photography lately. I did do a course at the college for photography, that’s when it was film, cameras, black and white, but I did do it, but it was, made my fibromyalgia worse, but it was good to go out and you felt part of something.

Martin says that his fatigue can be “just as bad as the pain with fibro.”

And I would say my pain started on my back. As I was working at the time and I was finding it more difficult to do my job, and I kept going for years with my pain and fatigue, well it was mostly the pain to start with, then I was finding myself really tired. I’d be going to work on the bus sleeping, on my tea break I’d be sleeping, lunch hour sleeping, in pain, by the time I got home and had something to eat I would be in bed, and I would say that lasted for about two years. Then I was struggling at work, then there was just one day I couldn’t go back to work. If I went back another day I would’ve had a breakdown or something.

Because there’ll be days that I don’t, not able to shave or things like that just because of the fatigue can be, it’s just as bad as the pain with the fibro.

Martin got help from the Citizens Advice Bureau with an appeal. He found the whole experience very stressful and said it made his fibromyalgia worse.

I was seeing my GP maybe every month, then I was still on the books for my, where I worked, but eventually after my time run out, six months, or, I had to leave my work. So then I had to try and go through the benefits system, which wasn’t that great. Originally I had a assessment and I was awarded 14 points but you needed 15 points, so I was, all I was getting was like £40 a week, but I appealed and somebody from the Citizens Advice Bureau, they helped me from my appeal and I won my appeal. So I was put back on to incapacity benefit, it was that at the time. So I had no more problems with the benefit system then.

How did you feel initially about you know, needing to go through the whole process?

It was, very stressful and it made your condition worse, and you felt if it was your word against the assessor’s word, then they write a report and it goes to the DWP decision maker and sort of they decide. So they don’t really get to see you, they just have to take the word of the person that did the assessment.

Martin prefers his local pain group to the one specifically for people with fibromyalgia.

Well it was actually through the fibromyalgia group that I heard about the [local] pain group. It was somebody that went to the pain support group that I heard through. Originally, they do a, like a social thing apart, different from the group you go to, like a, you go to the [university health campus] building and it’s not a formal, I started going to that before going to the [street name] one at the [regional health centre] in [the city].

What made you, change over to the groups? Was there a specific reason?

I think, a lot of the things they had the fibro group was alternative therapy like, magnetic therapy and say Reiki, which I’m more scientific sort of minded. And they had, they started having things like scarf parties, candle parties, we would have people talking about teddy bears, and I felt it was more women orientated because it was about 95% women there and I just felt, and they weren’t having as interesting talks as …

What do you feel like, is the ideal support to receive in your eyes or experience for you?

I’m not too sure. It’s difficult to say. It is seen as a, well generally a woman’s, I’m not too sure the percentage like, it’s about 80%/90% women sort of thing, so. It’s the same at the [local] pain support group, I’m, sometimes I’m the only guy there [laughs], but it’s more general pain, and, which makes it better.