Liz
Liz started experiencing pain at 47 and was diagnosed with fibromyalgia nine months later. Over the years, Liz has engaged with different ways to cope better with her condition. At times she finds having to rely on support from others frustrating.
Liz is 66 and is widowed with four adult children. She used to run her own hospitality business before retiring. Ethnicity: White Scottish.
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Liz started experiencing upper body pain in 2000 after being involved in a car accident and suffering a fall all in the same day. At the time she was an agency nurse and after doing a shift on the night of the accident, she experienced extreme pain in her neck and had to be sent home. Liz was never able to return to her job.
Liz went to see her GP who thought the pain in her neck, shoulders and arms was a result of the accident. However, taking medications (anti-inflammatories and painkillers) and getting physiotherapy did not improve her symptoms. Nine months later, she was referred to a hospital specialist who diagnosed her with fibromyalgia. Besides giving medical advice, the specialist informed Liz that fibromyalgia will restrict her life and encouraged her to learn how to manage the condition. Liz was relieved she had finally received a diagnosis and put “a name” to her symptoms. She felt receiving a diagnosis allowed her to start dealing with fibromyalgia.
Liz embarked on a journey of self-management. Over the years, she has found what works for her and what does not. She changed her job and became self-employed which gave her flexibility. She realised that if she overdid certain activities (such as gardening or painting her home) she would experience more pain. By limiting herself to specific tasks or timing activities, she can continue doing everyday things she enjoys and keep mobile. For example, she walks long distances but at a slow pace. She has also made changes in her home such as adding a stair railing and a new shower. She feels that she generally manages her condition well and “could be worse off”. However, there are times where Liz’s fibromyalgia is severe. Depending on her level of pain and flare ups, Liz adjusts her prescribed medications after communicating with her GP. She feels that this good relationship with her GP helps her to manage her fibromyalgia.
Liz has found acupuncture really helps with her pain and sleeping problems. After attending numerous follow-up sessions, she did not experience any fibromyalgia symptoms for several months. Liz is frustrated that regular sessions of acupuncture are not available on the NHS, and she cannot afford to pay for long-term private treatment. She feels that it would be better to support a person to access treatments which work for them instead of giving out medications which may not be effective for the individual. In the past, Liz also attended a pain clinic. Liz did not find their care helpful because she did not get the support she felt she needed.
Liz enjoys talking or meeting with other people and feels very close to her family. Before her diagnosis, Liz was a very active, independent person. She sometimes is frustrated by needing to rely on other people for help with everyday tasks. Liz’s advice to other people with fibromyalgia would be to adjust their life and to “control it, don’t let it control you”.
Liz described having a short consultation, but felt it was positive in terms of getting the information she needed.
Liz described having a short consultation, but felt it was positive in terms of getting the information she needed.
As soon as I saw the specialist he told me I had a fibromyalgia from the way I was walking and moving and said that fibromyalgia was something that was caused perhaps by my 30 years of nursing and lifting wrongly. I reiterated that I felt that I’d never been off work except once with a bad back, but at least somebody had given me a diagnosis. He again recommended to stop the physio I was getting because it was obviously making me worse, but to keep myself mobile and to take anti-inflammatories and painkillers as necessary and to look it up and try and manage the condition myself as opposed to somebody else telling me what I should be doing.
So that was the one and only time I saw a specialist, because I did look it up on the internet and decided yes, the only way I could manage it, because by this time it was a year on and I felt really disabled, I hadn’t been able to work or anything. So I changed, because the night pain was so bad I changed the type of work I was doing and I decided to go into catering, so I did that. I still would have problems with lifting anything heavy, my arms would get sore and I would ache all over, sometimes I would have swelling in my hands, and the best cure for that was dipping them into freezing cold water and keeping them there.
So in essence I managed my condition.
Liz started experiencing pain in her neck, shoulders and arms shortly after being involved in a car accident and experiencing a fall.
Liz started experiencing pain in her neck, shoulders and arms shortly after being involved in a car accident and experiencing a fall.
Right. Well in 2000 I was in a car accident, just a small one where there was two, two emergencies stops, I also had a fall on that same day. At that point I was nursing, I went into work, it was nightshift, and my neck was extremely painful, so much so that I had to go home and I have never nursed since because by the following day it got worse and it affected my neck, my shoulders and my arms.
Oh aye, it was aye, it was positive because I’d been waiting six months and going through all this other stuff you know, and the GP at the time was saying, “Well that wee accident you had” and it happened like three times in the one day “That’s the cause of it”, and I thought, “That’s not the cause of it”, I mean I’ve had whiplash before.
But as I say this, it was very debilitating you know, and even you know, getting out a chair it was, because you had to use your arms to get out the chair and your neck was sore and your arms and your hands and this you know, like it’s swollen today, this would all be swollen and my arms would be swollen. And this went on for six months and I’m saying, “Oh, it’s just caused by a wee emergency stop in a car”, no.
Liz found physiotherapy painful and didn’t feel that the pain clinic offered her what she needed.
Liz found physiotherapy painful and didn’t feel that the pain clinic offered her what she needed.
I saw my GP and he thought it was a result of the accident I had been in and the fall, a combination, but as months went on and it didn’t clear up, and I’d been put on painkillers and anti-inflammatories I was told, “Right, we’ll start physiotherapy, that might help”. So I started physiotherapy for three months, which was extremely painful because what they were doing they were putting me, putting weights on me to stretch my spine, which was fine on the day, but by the next day I couldn’t move.
So what happened afterwards, did …
Absolutely nothing at all [laughs]. As I say, I tried physiotherapy, I go to a local class if I want to do the exercises for the elderly, which I can do just the same in the house, so I don’t see the need to persist in going to pain clinic that’s not actually offering what I need, I feel I need. It’s as if “We’re not listening, that’s our course of action and if you’re not happy you don’t need to come”.
Liz has learnt to manage her symptoms. She avoids a “full on” exercise class as this can trigger her symptoms.
Liz has learnt to manage her symptoms. She avoids a “full on” exercise class as this can trigger her symptoms.
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.
Liz has found acupuncture really helps with her pain and sleeping problems. After attending numerous follow-up sessions, she did not experience any fibromyalgia symptoms for several months.
Liz has found acupuncture really helps with her pain and sleeping problems. After attending numerous follow-up sessions, she did not experience any fibromyalgia symptoms for several months.
At one point I was in the car accident and I was given acupuncture for six weeks and it was wonderful, I didn’t have a trace of fibromyalgia for three months, and I put it down to the fact that I’d had the acupuncture.
Unfortunately, we don’t get acupuncture in the National Health Service except maybe one or two sessions when you go through a pain management clinic, and that’s only if they feel it will help your condition not if you say it helps, so unless you can afford to go privately, but it does help when you get it and I’ve done that a couple of times when it’s been really bad.
They give you one shot, one shot is not enough, and I think things like that is very frustrating, because it’s very expensive, and I’ve had it twice and I felt it took, it alleviated all the symptoms, I had never slept better in getting it, but it’s something I can’t afford.
How does it make you feel if you know, there is something which does actually work for you but it’s not available, via the public health system?
Well I think it’s very annoying because you think “Well if that works”, if they looked at the bigger picture. Using natural remedies doesn’t help everybody, but it can help for short periods of time. If they used them and found how beneficial they were the bigger picture would be people wouldn’t have to take so much time off work, they wouldn’t necessarily be on long term sick if they tried alternative remedies that actually work, and that’s only from personal experience.
Liz talks about the things she feels can trigger her symptoms.
Liz talks about the things she feels can trigger her symptoms.
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.
Over the years, Liz has found what works for her and what does not. She changed her job and became self-employed which gave her flexibility.
Over the years, Liz has found what works for her and what does not. She changed her job and became self-employed which gave her flexibility.
So that was the one and only time I saw a specialist, because I did look it up on the internet and decided yes, the only way I could manage it, because by this time it was a year on and I felt really disabled, I hadn’t been able to work or anything. So I changed, because the night pain was so bad I changed the type of work I was doing and I decided to go into catering, so I did that. I still would have problems with lifting anything heavy, my arms would get sore and I would ache all over, sometimes I would have swelling in my hands, and the best cure for that was dipping them into freezing cold water and keeping them there.
I didn’t go back into nursing because I’d done my stint there and the overall effect was it was affecting my body, so I had to give it up, or I felt I had to give it up, nobody said, “You have to give it up”. I was off work for nearly two years when I first had fibromyalgia and then I readjusted my way of life to my way of life, to being able to do something and go out and work.
Liz says she’s learned over the years to adjust. She says “you have to do things that suit you and not that suit other people.”
Liz says she’s learned over the years to adjust. She says “you have to do things that suit you and not that suit other people.”
Yes, you learn over the years to adjust yourself to it, you would have to, there’s no point getting morose about it, you can get, still get frustrated, you’ll always be frustrated about it, because time is precious and I don’t like wasting it .You know, but I can go and walk for two/three hours, not a problem, but it’s at my pace you know, and sometimes I’ll walk to the shop and family will say, “What kept you?” I said, somebody, a famous singer said, “I’m doing it my way”, because I’m comfortable with that. It takes me twice as long to do these things, but there are things I can still do and that’s walk and get a newspaper from the shop, just not quickly.
So it’s about finding out what works for your in a way, or? What would you say?
Yeah, you have to do things that suit you not that suit other people. And if you find in doing something it, not, no, no two people are the same .I’ve gone to some, and I don’t regard myself at 66 as a geriatric, and I have gone to some of the classes, exercise classes. I remember somebody said to me, “Go and try tai chi”, and I did but I kept falling over because I couldn’t maintain my balance no matter how hard I tried.
For Liz, knowing too much can be “a bad thing” and so she doesn’t constantly research.
For Liz, knowing too much can be “a bad thing” and so she doesn’t constantly research.
Well to be honest with you, I don’t gather information about fibromyalgia because sometimes knowing too much about something can be a bad thing. When I was diagnosed I decided on a certain plan of action that has suited my lifestyle and I’ve continued with that. So I don’t constantly research it or look it up because I don’t see the need, there’s not been any miracle cure. Occasionally I would read an article about it, but it has not necessarily improved my situation so I disregard it. What works for me is what I do and there’s not been any major changes in what they do for fibromyalgia, so.