Messages to others
The people we talked to passed on messages of advice to others, based on their own experience. People are all different and what works for one person might not work for someone else. Here are their comments:
- Accept the pain and that your life has changed
- Don't let pain get the better of you, get on with life
- Be positive
- Keep a sense of humour and laugh, it can make your pain feel better
- Don't rely totally on medication
- Try conservative methods before medical treatments
- Avoid surgery unless it is really needed
- Be open to different ways of managing your pain including complementary therapies but make up your own mind what suits you best
- Learn how to manage your pain; find out about a pain management programme or support group self-management programme
- Try to get up and get dressed every day
- Age at interview:
- Age at diagnosis:
- Not working/voluntary work for Fibromyalgia Association; single.
I suppose a important thing to advise people is to keep communicating with other people, to never assume that people know how much pain you're in and people can't see your pain and people don't know where you hurt and where you don't, and if someone comes up and gives you a hug and they hug you too tightly you need to say you're hurting me now, to warn them.
Like I can't shake hands with people because my hands are quite painful, and if they grab it and squeeze my hand it really hurts, so I'll sort of keep my hands behind my back or something and just like nod and smile instead. Not be afraid to up front to say I can't do this, or I'm sorry I can't help you put all those chairs out in the room, I can't actually lift them and just sort of state it as a fact not as an apology, because you know, you don't need to feel sorry that you can't do it, its just a fact and once they know that people just accept it. So communication is very important and not apologising for yourself.
- Don't push yourself to the limit or overdo things; learn to pace yourself
- Pace everything you do
- If your pain flares-up take it easy, but then build your activities back up again gradually
- Prioritise important jobs
- Don't live to other people's expectations
- Set small achievable goals every day and use them to build up to bigger goals
- Reflect on your improvement
- Use relaxation
- Try gentle exercise, it won't hurt you (stretch, yoga, swim, get a dog, buy a pair of trainers)
- Age at interview:
- Retired airline customer service representative; single.
Just what I've said try and, treat yourself as best as you can and stretch everyday. As soon as you wake up, stretch. The first thing anyone should do with chronic pain is stretch before you even, I stretch in bed before I get out of bed. Do you ever notice a cat or a dog, especially a cat, a cat never jumps up unless they are frightened but when a cat is you know they always go 'aaaaahhhh'. I do that in bed and then I just think, doing things that make you feel happy that's the best.
Planning things. Plan your life don't say 'Oh well, you know I might be in a lot of pain that day I won't do that'. Make the arrangement or make the commitment and then plan your life as best as you can to be you know to be available in fit form. And the water.
Go to the swimming pool, swimming or just walking in the water or do anything in the water but just get in there because we are weight less in the water and you often find you can do exercises in the water that you cannot do on land. And I think that's good because it makes you feel better about yourself, you know.
- Start a hobby, interest, volunteer or get a job to help distract you from the pain
- Age at interview:
- Production operator (not working); married; 1 child.
Just try and find an escape. Just find something else to take your mind off it, even if it's only for half an hour a day. Something that you enjoyed. When I was at school, like I say, I wasn't brilliant at art at school. I didn't go forward and do any levels in it or anything, but I was always quite, I could copy things, I could copy a drawing.
So I thought 'well, why not try it?' So I tried that and I enjoy it and it's very relaxing, painting or doing a jigsaw, some people might like to do a jigsaw or they might want to get out and, I don't know, film something, a tree or something, just anything, just something that'll take your mind off it for a little while, if it's something that you'll enjoy or something that'll be a challenge to you as well.
The more challenges you get thrown at you, the more ways you find to overcome them. So that's sort of... and just try and be positive. Don't look for the black side of everything. Don't look for a downside. It's very hard, but just try and be positive and know that one day something, something will give, something's got to give as they say, so at the end of the day it'll get better, or it could get worse before it gets better, but there is something out there that will help.
Then find it, find anything you can, take any advice you can. Pain management clinics, start there, that's the best starting point for anybody in pain. I would suggest to anybody that's suffering long-term chronic pain to go and see somebody that knows how to manage pain and then they'll teach you how to overcome it and just to concentrate on different things, rather than what you're experiencing day to day.
- Make the best of the good days
- Try not to be alone
- Join a support group or talk to others with pain
- Keep communicating with friends, family and healthcare professionals
- Age at interview:
- Fund-raising manager; married.
I was just wondering have you got any messages for other people starting out with back pain problems at all?
So many things to say, the main thing with a back problem is not to let the back problem, back pain get the better of you but you to control the back pain. I've been in a situation where the back pain has controlled me and now I'm in a situation where I am trying to control the back pain. I still have my down days where the back pain gets, wins but most of the time it is me being in control and me taking the responsibility to move.
Like I mentioned earlier if I wake up and I'm in so much pain I just want to stay in bed I just want to curl up and die in bed or some days I just have to, my mind just has to take control and say 'You will, you will only feel worse by staying in bed, you will feel better if you get up'.
Even if it is just a matter of getting up and getting into the shower and then maybe lying down flat on my back on the floor rather than on the bed for a while. But I mean a shower helps or just getting up and going downstairs to get a cup of tea and sitting in a different position, getting some fresh air. So, and exercise, any form of exercise.
And exercise again doesn't mean you have to join an aerobics class exercise, could be anything that requires you to stretch the muscles just a little bit more than they used to. At the moment when I'm commuting instead of standing on the right hand side of the escalator and waiting to get to the top I walk up the left hand side and yes there are people who run up there etc...
But just the fact that I am moving I am not relying on, on the escalator.
When I am sore I will just stand there but most of the time it is just trying to do that little bit more, you know stop, get off your bus two stops early and just walk the extra two stops it doesn't have to be any thing major. And then you move on from there, I mean you can't stop at that, but eventually when things get better, move on to what ever it is you have to do.
And exercise is different for different people, you know for some people if just gardening is exercise and as long as you garden in the correct way and there's information every where about how to garden properly, how to lift properly.
If you learn how to lift properly, learn how to carry things properly, learn the anatomy of the spine, why your spine is the way it is, it helps you understand a lot.
- Don't assume people know that you are in pain, they cannot see it
- Ask for help and accept it when you need it
- Don't be afraid to tell people your limitations
- Recognise that pain is physical and emotional
- Age at interview:
- Retired careers officer; married; 2 children.
My key bit of advice. I think it is important that you recognise as early as possible that pain is both physical and emotional and that there will be almost inevitably depression, anxiety, stress generally and that they shouldn't blame themselves. The problem is that sort of chronic pain creeps up on you, what point does acute pain become chronic pain it is a continuum there is not any sort of time that you can identify.
But I think the sooner that people are informed about what is happening to them and they can access information that will help them to understand the situation the better.
- Don't keep it all in; have a good cry if you feel like it
- Find a healthy way to deal with anger and frustration
- Don't become a 'moaner'
- Be nice to yourself
- Get as much information as possible about pain from books, support groups and the internet
- Ask your doctor if there is something you don't understand
Last reviewed May 2015.