How to support someone living with chronic pain?

[Lucinda15]

A close relative is living with chronic pain, and has done for a few years. her mobility is extremely reduced. She will eventually need a wheelchair within a few years we suspect. She is on strong painkillers but does not tolerate these well, they affect her mood and make her feel low and teary so is constantly balancing the necessity of them for her pain against The way they make her feel emotionally.

We have all done our best to support and encourage her. But she is low about living with this pain and about the future which looks quite bleak. She has lost a lot of the things she loves and had hoped to do. She does have a wonderful hobby that she enjoys and will be able to manage despite her mobility issues and pain which is a godsend. I go round often, and take my children which she loves. But I feel helpless and wish I could do more. I run out of things to say when she says she has had a bad night or feels low/in pain. I say I’m sorry and just let her tell me these things, I know she tries not to ‘go on about it’ but I try to let her know she can with me if she needs to.

Is there anything more I can do? Or say? I’m interested to hear what others experiences of living with chronic pain is like, and what they wished people did or didn’t do in trying to support them.

What is the cause of her chronic pain?

I think she's very lucky to have you.

I was in hospital recently and the old ladies in there seemed to be worrying about shopping but they were getting carers set up via adult social care - any practical help would be good.

Maybe ask doctor if any vitamin supplements could help - depends whats causing it, they may not help at all. I have lots of pains and a vitamin supplement I take makes a huge difference. Pharmacist might know if you know the condition but do take advice as overdosing on some supplements is bad. Mine is Feroglobin from the chemist otc but I test anaemic.

I’d say definately relieve some of the physical stresses from her. So tidying around for her if she’s happy for you to do so. And maybe some shopping. Things that’s will be frustrating her. From experience of seeing someone in chronic pain, it’s the frustrations of not being able to complete the simple tasks you once were able to, meaning things get on top of you.
She’s lucky to have you

I would ask her though - one lady in hospital with me was desperate for all the practical help she could get, another was reluctant but accepted she needed it, a third was in tears at the idea of people going through her stuff. It's quite a personal thing but I'm sure she would love the offer if you have time. Food also seemed to be an issue, cooking easily.

Personally I don't like people doing things for me without checking first as it makes me feel even more useless than I am. I do struggle with cleaning and cooking but will ask for help to complete things. I am on anti-depressants to cope with the misery of chronic pain but someone to listen to me is fabulous and I have friends who are happy to do so thank goodness. Does she have online shopping available? That makes me feel I still do the shopping.

Thanks for the advice.

She has a chronic and severe back condition, after a lifetime of problems and multiple surgeries. She has a partner who supports her with cooking and shopping etc, and can afford a cleaner. So all that is generally taken care of, although one of her passions was cooking and I know this upsets her, not being able to do this so much anymore.

I might suggest the antisepressants. She is generally so stoic about it, but recently has had more and more low days and I’m worried for her. I just feel so helpless, wish I cld make it easier. I’m going round later with a bunch of flowers and my baby, who always seems to cheer her up, but even all that just seems so empty. I worry for the future and wish I cld make it better.

I wanted to mention if she is seeing her gp regularly as my DH has a chronic pain condition. He has regular medication reviews and changes to his medication in order to try and keep on top of the pain.

OP you could try helping her to get in touch with her values and what is really important to her. Get her to think about the things she either enjoys doing now, or the things she used to enjoy before the pain, and really think about what it was she got out of those activities.

Sometimes people have very physical hobbies, for example taking their grandson to play football in the park, but actually the reason it means so much to them is because they value spending time with their grandson, making memories, or teaching their grandson something. It might have nothing to do with the physicality of the activity and therefore there may be other ways they can get the same rewarding feelings - like teaching grandson to play chess, or helping him read.

You mention your relative likes cooking but can’t do it so much now. Why does she like cooking? Maybe she gets enjoyment out of planning what to make, or eating the end result, or maybe it’s about people coming together to eat the food. She may still be able to achieve these things with a bit of adaptation. For example, she could plan the meal and you could get the ingredients in for her and help with the prep/cooking.

People with chronic pain can be quite hard on themselves and find it difficult to accept that they can’t always do what they used to. Sometimes their thinking is quite all or nothing and they feel like if they can’t do it like they used to, they don’t want to do it at all. Unfortunately this can lead to them doing very little and life seems to shrink. Encourage her to think of what she CAN do, not just what she can’t do.

Also, just to say that you are doing all the right things by being there for her and listening and trying to understand what she goes through as best you can. People with chronic pain often don’t want to seem like they’re ‘going on’ about it so keep it to themselves but ultimately that can end up making them feel depressed and frustrated. So it’s great that she has someone who really cares and listens

You sound like a lovely relative! I have chronic pain problems, which will worsen, and I expect that I am a bit like your relative, in that I don't like to burden people with my problems, so try to keep my feelings to myself.

Things which have helped me are a 6 week course of counselling, a referral to a health psychologist (because emotional problems relating to your health can affect your physical health too), being under the care of a specialist pain management consultant rather than just the GP/neurologist/neurosurgeon - he came up with some different ideas to manage my pain which have been effective.

I do as much exercise as I can manage, which I think helps with pain and my mood - my hospital runs courses of gentle exercise or exercise referrals for people with health conditions. I take an antidepressant called duloxetine, which helps with nerve pain, and there is another called amitriptyline, but that made me eat everything! My gastroenterologist thinks that chronic pain puts the body under a lot of stress, so it causes most people a lot of problems with anxiety or depression.

I don't like it when people fuss too much, especially when they tell me that they couldn't live like I do - I don't have a choice! My good friends acknowledge that it is a bit shit, visit me when I am ill, and do things that I am able to do, like going for coffee, rather than a meal late at night, because I am too tired then. I am sorry that that is very long. I hope you might find a helpful suggestion somewhere in there.

Also, if it seems like you are getting it all wrong, it might be because pain and fatigue can make you quite irritable. I know that when I have a bad day I unfortunately always take it out on the people I trust and care about the most (and who are the most caring to me) unless I hide in my room and don't come out x