Helen

Age at interview: 55

Age at diagnosis: 35

Brief Outline:

Helen developed pain about 20 years ago. She was diagnosed with fibromyalgia after reading about it and prompting her GP. Helen loves being outdoors and close to nature. She tries to enjoy life and stay active with gardening and walking.

Background:

Helen is 55 and is single. She works part-time. Ethnicity: White Scottish

More about me...

Helen used to be a very active person with a love of mountain walking and the outdoors. Over 20 years ago, she became unwell “virtually overnight”, and had difficulty walking and a complete lack of energy. Originally, her GP thought it might be post-viral fatigue syndrome, but Helen was not convinced, and questioned whether she had even had a virus. Her symptoms continued for about 3 years, then disappeared for a period of time. When Helen’s symptoms returned, she began experiencing issues including muscle pain, tiredness, and problems with her memory and writing. She was told that she had irritable bowel syndrome, and was sent for further tests due to weight loss. A hospital consultant noted depression on her medical records, though Helen was confident that she was not depressed. Some time later, Helen read about fibromyalgia in a magazine and recognised her symptoms. Her GP agreed after a discussion, though told her that nothing can be done about it. Helen was frustrated by this and by the time taken to reach a diagnosis.

After her diagnosis, Helen had to push to be referred for various assessments, such as for memory difficulties. She feels that “it’s almost like either nobody knows or don’t really want to know”. Helen has tried various medications but stopped taking them due to side effects, or because she felt that they did not work. She has sought out alternative treatments, such as massage therapy, which she paid for privately. However, she no longer uses such treatments, as she found they did not improve her symptoms, and were inaccessible due to the travel distance. Helen rarely sees a GP, as it has been suggested in the past that she is a hypochondriac.

Helen feels that there are people who do not believe that fibromyalgia exists. She thinks that professionals working within healthcare and the benefit system in particular need to be better informed, and understand the impact of fibromyalgia on people’s lives.

Fibromyalgia has negatively affected Helen’s life. At various times, she has had to give up work because of her symptoms. She struggles with tiredness, difficulty recognising people and sensitivity to sound. After work, she feels too exhausted to do anything, which restricts her social life. She also worries that the people around her may find her rude, as she sometimes interrupts them in order to remember what she wants to say due to her memory issues. She has also been forgetful about things such as turning off the oven in the past.

Helen has found ways to adapt to her symptoms over time. She manages to work part-time by sticking to certain routines. She copes better living in a quiet, rural community close to nature. Although she needs to adjust her activities, Helen keeps active by gardening and walking which she feels is good for her physical and mental wellbeing. She tries to enjoy her outdoor activities as much as possible, though she knows she may feel worse afterwards. Further, Helen is in regular contact with a friend with fibromyalgia, who understands her experiences. She feels that they have “grown” on this journey together, and values having someone who is there for her and who she can have a laugh with. Helen advises others with fibromyalgia to search for support, as it might make a difference.

Helen says that a problem with fibromyalgia is that it’s often invisible to others.

Can you summarise in one sentence what it’s like to live with fibromyalgia?

How about one word?

It’s okay.

Rubbish [laughs].

Other people they say, “Can I use one word?” you can.

[laughs] It changes your life completely. I guess again, you’ve listened to a lot of people, and they’ve told you different stories and, if I was sitting in your seat listening to me I would probably get a different impression just listening to me than I know being in my body, if you know what I mean.

And I guess I’ve you know, talked for a while and given you hopefully fairly coherent answers, but I know that you know, for another large percentage of my day or time that things can be quite different, and it’s easy to again, judge people from the outside and think, “Well gosh, well she seemed okay, what’s the problem?” you know.

But people do have significant problems, and I think the problem with fibromyalgia is that a lot of it is very hidden and they look fine and at times, and it can appear very fine, but a lot of the time they actually aren’t for different reasons. So it’s very difficult to get that across to people and be believed.

Helen recognised her symptoms as being fibromyalgia from reading a magazine. She was frustrated that it seemed to take her so long to get a diagnosis.

Well yes, I’d had this strange thing for quite some time and it was really annoying me because I seemed, as I’ve said, to have all these very peculiar unrelated symptoms. And, and then actually I went to visit my sister and, she just left me a, a magazine out to read while I was there, and interestingly in the back, under your sort of Dear Doctor things, there was here a thing about fibromyalgia. And I read that and basically it said exactly all these symptoms that I’ve just been talking about, and all of these peculiar things, it didn’t just say some things that seemed to be connected, just everything I’d been talking about was suddenly in this magazine in front of me.

So I took this to my doctor and said, “Well look you know, I’ve read this here and it seems to be saying just exactly what I’ve been saying, so what do you think?” So that’s when my GP said, “Oh well, we can test your, you know, your pain bits and see”, and which she did and then she said, “Oh well, I suppose then yeah, you could have that”.

But it quite amazed me because apparently even then fibromyalgia was said to be fairly common and not some really weird strange thing that nobody had heard of, and how they haven’t picked this up over all the years before I’m not quite sure.

So frustrating, but she said, “Well yes, you could have fibromyalgia and basically, well that’s you for life because you’ll never get rid of it”. So that was my diagnosis.

Helen tried massage therapy but didn’t think it improved her symptoms.

And I did over the years also try and find you know, alternative treatments, and get some sort of massage things and anything anywhere that I thought would help. You know, I tried, but nothing really has helped, so.

Well there’s various other things with words that I can’t remember like is it Reiki or something like that, or, these type of things. I tried one or two things, but nothing really seemed to work. And I couldn’t, I didn’t have the energy to keep going, travelling to places to do these things, so.

How far would you have to travel for example to go to such treatments?

About 40 or 50 miles from here.

Would it be one way then?

Well yes, double that yes, yeah.

And, did you access that yourself or you know, was that via the NHS?

No, it was myself.

Helen describes how the “mental fog” she experiences makes it hard for her to cope with busy places such as shops.

Trying to take in too much outside stimulus. So yeah, if I’m say in the shops, which I don’t do terribly often, I go for my food shopping and what have you, but I wouldn’t go round just for a day out shopping. I live in a very small rural community and everything is quite calm and peaceful. If I suddenly was transported to the middle of a big city, I would literally just shut down. I can’t take in all the stimulus that’s going on and it’s just too much for my brain. So, and now I can’t remember what you asked me.

It’s all right. Have you …

This is the problem as well you see.

That’s absolutely okay.

You can only use a small part of your brain to think of something and everything else gets shut out to concentrate on that thing, and then whatever else there was has vanished.

Helen talks about interrupting people which seems rude but otherwise she’ll forget what she needs to say.

Well I guess memory and things like that again, I can start conversations and then have no idea what I was talking about, I can put things in places and have no idea what I’ve done with them, or, as I think as I said to you earlier on, can you remind me to put the lights out and where the key is because I could just walk off. You know, I can leave the grill on or whatever and not know until I smell it burning.

So my mental capacity at times can be quite small, but equally unfortunately, it means sometimes I interrupt people because if I don’t say exactly what I’m thinking about at that particular second I completely forget it again. So it can appear that you’re quite rude when you don’t mean to be, it’s just possibly something they’ve said suddenly triggers a memory so you want to slip it in while you think of it otherwise it’s gone. So sometimes people can think that you’re always butting in when you don’t mean it like that .

Helen began experiencing issues including muscle pain, tiredness, and problems with her memory and writing. She was told that she also had irritable bowel syndrome.

And then after about say three years it seemed to disappear again, and I became back to normal. And then I started getting symptoms, again, I was getting tired again, I started getting the symptoms that I was then told was irritable bowel syndromes, and basically everything degenerated again. I was in quite a lot of pain, I get a lot of muscle pain, knots, particularly in my back, my shoulders, my neck is always jammed up, my shoulder blades are terrible, and that gives you a long headache because all your muscles are just in knots and jammed.

I started getting very, very cold; I could never get warm. My mental process slowed down very much and I found I had a lot of mental fog, I couldn’t process information very well, and lots of really peculiar things such as, lack of facial recognition, so unless it was somebody I knew very, very well, if somebody had been and spoken to me, and came back again even a few minutes later I wouldn’t recognise then, which could actually be, well frustrating, but exceedingly embarrassing.

I’ve become quite dyslexic, with numbers and writing, my handwriting’s gone quite peculiar, lots of different things. But after my symptoms appeared, they came on fairly quickly and they got more severe, and I was at the time, the second time they appeared working as a gardener, and eventually I had to give up work, partly because of the tiredness because I literally couldn’t stay awake, I was just falling asleep anywhere, partly because of the pain in my muscles and the IBS, and eventually I gave up work and, I didn’t work for over three years and was finding it hard to get back into it, but at the time, I had to go for, doctors’ appointments, whatever and they said whether they thought you should be back at work or not.

Helen thinks that assessors do everything they can to make out you’re OK and cut benefits.

The people I saw that told me to go back to work were basically from the money side of it, so all they wanted to do was cut people off the list and stop paying them money. And quite a lot of the questions I answered, there’s no way to describe this, they completely lied. I told them an answer and they wrote something entirely different, and I complained bitterly and I just got completely stonewalled. They wrote completely different things in the report than I’d told them, and it was just a load of lies and it was just the thing to get you to go to stop you from signing on and getting any money while you couldn’t work, which again is, that is actually depressing.

I never, ever want to not work if I can work, I’m not that way inclined, but when you can hardly haul yourself out of bed and you can hardly stay awake, and one of the things I wrote down was the fact that you know, I literally couldn’t stay awake. I was sleeping at that point about 18/20 hours a day, and when I did get up I was just completely out of it and they said, “Well that’s not on this list that you can’t stay awake, it’s not here, so you just discount that”.

Helen recognised her symptoms in a magazine and realised she had fibromyalgia.

Well yes, I’d had this strange thing for quite some time and it was really annoying me because I seemed, as I’ve said, to have all these very peculiar unrelated symptoms. And, and then actually I went to visit my sister and, she just left me a magazine out to read while I was there, and interestingly in the back, under your sort of Dear Doctor things, there was here a thing about fibromyalgia. And I read that and basically it said exactly all these symptoms that I’ve just been talking about, and all of these peculiar things, it didn’t just say some things that seemed to be connected, just everything I’d been talking about was suddenly in this magazine in front of me.