Fibromyalgia

I mean 100% day and night I’m in pain. I also have severe arthritis in my knees and my hips, so that doesn’t help, so from, and if I’m out my fibromyalgia affects my right side mainly, but sometimes my left side gets it. But my right side is a lot worse than my left side. And it’s like a nagging, I dunno what it’s like, it’s not a dull ache, it’s more than a dull ache, but it’s not a severe pain because obviously I’d be screaming if it was, it’s somewhere in the middle but I don’t know where.

I get fatigue, but I don’t know, I don’t sleep very well because of the pain, so I don’t know if the fatigue’s just because of the pain or the fatigue is an extra added, you know what I mean? It could be either.

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.

Well, the symptoms, if you know, are very restrictive. I can never find a comfortable position in bed at night, I never seem to find a comfortable position in a chair. The symptoms that I feel are, are just un-describable pain. When you take tablets, you have terrible pains in the neck, in the head, in the hands, the fingers, the knees. Even something as silly as wearing a shoe that has laces, sometimes you can’t even tie with it, because there is no strength in the joints and when you do it, it’s just like, it’s like an electric shock goes through the point of contact. An electric shock can go through when trying to manoeuvre in any situation.

I don’t think people really realise, as bad as the physical pain is, it’s the mental pain as well. It’s the lowness of mind, the lack of able to do what you used to do or able to do, it absolutely invades every aspect of your relationships, from your grandchildren, from your wife, from shopping, from driving a car, you know? You can’t hold a steering wheel, you know, you can’t turn your arms, you can’t raise your arms up to scratch the back of your neck because the pain you feel in your shoulders, you know? And you don’t like always talking about it because I don’t want to be defined by fibromyalgia, I want to be defined by who I am as a person, not what I have as an illness.

Like having, having a shower and changing the bed on the same day is a big no-no you know, getting dressed, the sensitivity, on your skin, hearing sensitivity, smell sensitivity. I mean loud noises for me is just [gestures to ears], I can’t handle it. Clothes, I’ve had to change to what I wear to things that don’t have seams, bras that don’t have hooks that I have to put on over my head because they’re softer on my skin you know, shoes, I’ve went up a shoe size because I put on weight, I’ve had to get rid of all my clothes and had to buy a whole new wardrobe because I’ve put on so much weight.

I find that it’s unpredictable, but I know that if I stand at the sink to do the dishes I know that my back is going to get sore so I have to sit down to do the dishes, but then I’ll have to stretch into the sink so my arms are going to get sore.

So it’s, it’s finding ways of doing things differently you know, getting a shower, I know that I’m going to be exhausted after getting a shower, so I get a, I change the bed one day and I get the shower the next day because I know that I can’t do both.

I mean in all honesty, everything, everything has changed you know, even things you know, people say like, “Oh, you’re tired, go and lie down”, it’s like well yeah, I can lie down but you know, if I lie in one position for too long that’s painful or I get stiff, so you know, I have to make sure that I’m moving around enough to you know, prevent that from happening and you know, people say, “Oh, you know, go and try you know, just lay in the garden for a bit” or you know, “Go and watch some TV”, and I’m thinking, “Yeah, but sometimes you know, pressing the buttons on the TV remote if my hand’s painful that day, that’s difficult to do”.

You know it’s, it’s affected everything, and I think people, people think about the bigger things that it affects, but they don’t always think about the everyday things of walking up and down stairs or you know, lifting up the kettle or you know, I’m going to sit and watch the TV for a couple of hours you know, it’s those things that I think people don’t always think about and when you say to somebody, “I struggle with this”, their immediate reaction, “What? What do you mean you struggle with that, that’s such a basic thing?”

I haven’t yet, but, I know definitely that, washing my hair is quite a difficult task but I deliberately keep my hair short to try and minimise that, and there are definitely days when dry shampoo is absolutely necessary because there’s you know, there’s some days where and you know, even on the days where you feel like I can wash my hair, some days you know, I’ll go in and I’ll do it and I’ll be fine and no issues, other days I go and do it and I need a two hour nap afterwards and you just never know what you’re going to get.

Sometimes driving, I feel, you know, [gestures with hand] trying to get the seatbelt on, trying to open the door, in parking spaces… I’m not classed as disabled but I need the door right open so that it clicks open, but sometimes there’s cars there, you can’t do it and you’ve got to slither your way out. And I find that really painful, and the same going in. And then if I do get it [gestures with hand] pushed right open, then I can’t reach it to close it [laughs].

It’s this back and forth…

Yeah. And my feet are sore but I’m still managing okay with driving with my feet. Putting the seatbelt on sometimes, if someone’s with me, they fasten it for me. Because it’s just [gestures with hand] bringing it down, this arm I’m okay and I can get it.

I think in terms of the topics that we were talking about and what was discussed, a lot of it to me at least felt like it was aimed at people who had known that they’d had fibromyalgia for a number of years and kind of knew what their triggers were that could trigger a flare or like knew what it, knew more what it was like for them. Whereas with me I was sort of sat there thinking like, “I’ve only known I’ve had this for four months you know, I have no idea what my triggers are, I’m still trying to work all of that out”.

No, you have periods in a year, I would say in a year I would have three periods where it’s severe and the rest of the time it’s manageable. If you go out your comfort zone and do things, like I wouldn’t go to a full on exercise class because that would trigger it all off again. So it’s within yourself to actually manage your symptoms by not doing things, not doing nothing but just certain things you know, don’t lift heavy paint pots, don’t paint the ceiling because these things trigger off a bad bout where you’re incapacitated for two or three weeks at a time.

So would you say that you know, like having these around three bad bouts per year it’s because you did something which went a bit overhead, or is it something that …

Nine times out of ten, yes.

And how do you, how do you know it’s going to happen you know, worsen your symptoms?

Because the pain just kicks in, the pain you know, something simple. Like most days on a good day you can do your normal things in the house like hoovering, make the beds. I myself find lifting anything, like I can’t now lift a heavy pot, I haven’t been able to for quite a number of years, lifting my grandchildren is a problem, and I feel when I do that, these are things you do normally, but when I do that I then have to, I know the next day my arms and my hands will be painful, and sometimes they get, they get swollen .

So that, so there are some things you do and you do automatically, that trigger it off and you know afterwards and you say, “Right, well next week I won’t do that”, but that doesn’t always happen.