Anyone got any advice for getting on with your life when you have chronic pain?

[agenuinestubbs]

I have slipped discs and osteoarthritis in my neck, caused by joint hypermobility syndrome/EDS 3. I have also been diagnosed with fibromyalgia. I’m relatively lucky in that I am able to work full time, but my pain and fatigue levels have been getting worse over the past year. I often spend the weekend recovering from work or some other activity, and occasionally have flares that leave me bed/sofa bound for the weekend.

This thread isn’t so much to get tips for improving the pain, as I do have some strategies already. But I would like some advice for not letting it dominate. I’m currently having a really bad bout of neuropathic pain/migraine all over my head, neck and shoulders, and all my conversations with people seem to revolve around it. I’m sure I’m being so boring, and I don’t actually WANT to talk about it but it just seems to dominate.

We don’t have any children yet and I can’t really imagine being able to care for a child while being like this, but at the same time I don’t want to just give up on things because of my conditions.

Can anyone help?

I can't help - I also have EDS type 3 and inflammatory and osteoarthritis - but I just wanted to say that I understand about the pain and fatigue.

I take tablets and also have a spinal cord stimulator which has been amazing for some of the pain. I also do pilates and yoga.

I'm fed up of being told about mindfullness, relaxation, exercise etc to help cope with the pain. What I actually want is to just not be in pain and exhausted from it, or the medication.

I hope someone comes along with some suggestions though.

You could try ACT - acceptance and commitment therapy. There's a book by Jo Anne Dahl called Living Beyond your Pain.

I've tried ACT. It barely scratches the surface when I'm in considerable pain, which I often am.

I'm constantly amazed by people who claim to live with chronic pain and yet have the focus and energy to sit and write books about the latest brainwaves for pain management. I wish! Then there are those who train and teach pain management strategies (eg. ACT) and can't understand why the people they offer it to don't find the Holy Grail of pain relief in it. My own experience is of medical professionals who do just that, and yet by their own admission have never had to live with chronic pain themselves.

I was part of a small group recently in a hospital setting. We all had similar diagnoses and had been invited to join a programme offered by the psychology department. One of the participants explained that a specialist she'd seen had said the pain she goes through on a regular basis is considered worse than the pain of childbirth. Hearing that made me feel vindicated. Would most women in the throes of delivery opt for ACT, or would they scream the place down demanding whatever drugs they could get their hands on?

I rest my case

For me it’s managing my life and being kind to myself. Things like buying prechopped veg, chicken etc make a big difference to my life. Not going out two nights in a row, being “lazy” (exhausted) when I need to be and being selfish when I need to be.

I’m being referred to a pain management course and have to “pass” to get on it, being told by my consultant that I might be in too little pain for it when I was describing that I felt suicidal at times because of it, made me want to lamp him one!

Find people who get it, ditch the ones that don’t.

I have pretty horrific fibro and a 4 month old baby. The only reason I can even come close to coping is accepting I can't move the earth.

I'm early 20s so it's horrifying to admit sometimes I'm in such agony that I can't even hold my baby. Luckily I have a partner who accepts things like this and takes it all in his stride.

The only thing I can suggest is pacing. Let the world go past you if you need to rest. Also, naps. Naps are great.

Oh this ACT thing drives me mad.

Seriously, if pain is so controllable by these methods why do we have pain killers? Why do they do joint replacement surgery? Why not get everyone to pace and visualise and whatever else?

I need at least a knee replacement. I have bone on bone. I am also, apparently too young so have to carry on in this much pain until I get old enough??? How dies this make sense? I can't bear to walk up and down stairs because of the pain. My life is getting smaller and smaller yet if I were 20 years older I would already have had the surgery.

Do they have any idea of what it is like to live in pain?

The only thing I can suggest is pacing. Let the world go past you if you need to rest.

Please please someone explain to me how you can pace if you work? Whenever I ask the professionals they look at me like I've just told a class of 5 year olds the truth about Father Christmas.

Weetabix, for me it’s managing life outwith work - but it means sacrificing things I want to do to be well. I’m hoping to go part time in the new year which will be tough financially but I literally can’t go on full time (I’m early 30s).

I’m trying to be positive about the course - I think it’s this ACT thing you’re all talking about. I said no before because it’s 12 weeks, once a week and 60 hours in total. I couldn’t ask an employer for that time off without being laughed out the place.

I’m on a mix of tablets and also some pain patches that I got a hard time for not giving enough of a vhance. Now that I think they might be working I’ve been told they’re not licensed for use with my pain and I should be coming off them.

Ginandsonicscrewdriver

I have such a mental block with the process. I work 4 days a week. I do pilates, which the hospital want me to do, ditto going to the gym. I have at least 1 hospital appointment a week.

They go on about doing something enjoyable yet I am exhausted after doing all the things that I have to do.

I barely do any housework or cooking. I just want to go to bed. How do I pace that? If I cut out anymore I will cut out the things that the hospital tell me that I have to do.

It makes no sense to me.

I've been living with Fibromyalgia for 25 years, plus a wealth of other more recent medical issues.

I have had to go part time, plus go down a grade in the work I do. I'm lucky in that if I'm having a bad day I can take time off with issue, but not all employers are so understanding.

How to I cope? Planning, planning and more planning. If I want to go to the shop I clear my diary either side of the day I want to go. If I'm travelling anywhere I need to clear my diary for at least 3 days.

It's frustrating and I've lost many so called friends because of their lack of understanding. I get angry, I get emotional, but through it all my DH and family get me through the bad days.

Have you tried canabis oil? (Holland And Barrett)

I have CRPS, and though I take lyrica to modulate the pain a bit I am never out of pain. But I have to say that accepting that it wasn't going to be better, and that I can do less and be in pain, or do stuff and up my pain levels but do what I want really was a big turn around for me.

I have fibromyalgia and osteoarthritis plus a recent MRI scan showed abnormalities, no idea what though because the GP can't see me till January, sorry I mean speak to me, it's a telephone appointment

I work full time because I have to but I changed to a desk job as I physically can't do any other work. I go to work, go home, eat, sleep and then do it all again the next day. I'm ill all day Sat and then I start to recover on Sunday before the week starts all over again.

I don't enjoy doing things I enjoy because although I want to do them I end up over exhausted. My life was much worse before I started taking CBD oil, it's really helped with the pain and fatigue. I know my limitations and exercise makes me much worse so I don't do it. I live in my bedroom in the way that most people live in their living room. It's the only way that I can cope.

I did a hospital ACT course which was 6 afternoons a couple weeks apart, and at the time I was thinking about quitting work so didn't really care what they thought. It was actually very useful once we realised it wasn't about adjusting meds or fighting hospital/benefits gatekeeping.
It focused on thinking about priorities and how they might be achieved, and experimenting with doing things differently. Not a miracle cure by any means, but did help, along with taking time with a group of people who get it.

Focusing on something I can enjoy occasionally makes it easier. And ways of getting stuff done, like emailing school because I can't write in diaries, and sitting in bed and getting kids to bring stories to me to read to them before bed. And stashes of ready meals, prepped ingredients, etc. Ordering loads online rather than trekking to shops. And trying hard not to compare myself to other people with the same conditions who manage things I can't do. Not very good at that last one...

Another bedroom liver here, Star. Solidarity!

When I realised I was spending every weekend in pain, more often than not, simply recovering from the working week while often unable to function enough to organise the rest of my life (and I don't mean social life - what's one of those?!) I had to give up working. Hope to go back to something one day, but also prepared to die early in poverty if needs be. I'm sure that sounds melodramatic to some, but I see it as a distinct possibility, the way things are economically now. Ho hum. At least while I can still afford a life of sorts, I'm managing, and any pain-free, exhaustiion-free moments are mine to do with as I like. I just wish there were far more of them!

Cannabis oil did nothing for me. I’m not convinced by it at all.

I’m on a lovely combination of medication and have tried everything there is.

Witch, if I did Pilates and went to the gym once a week that’s all I’d be able to do that week. For me, it has to come down to mental health as well. I’m tryinb to fit Pilates back inas I get relief from it, but it’s hard.

Witch, if I did Pilates and went to the gym once a week that’s all I’d be able to do that week.
That is basically where I am at. I do pilates 3 times and gym or physio 3 times a week.

Without that though my pain and my mobility get much much worse but in some ways some of my pain is worse doing the exercise and the fatigue is definitely worse.

I don't know the answer. They talk about pacing yet that only seems to work when you have absolute control over what you do. If you have to work I just don't see how you can pace. If I have total control over being able to sit, stand, walk or lay down I am much better but how do I find a job that allows total freedom around this?

yes, working and chronic pain feels incompatible but equally I need the routine and, the social contact (I live alone) and to not feel left behind.

Sorry op, I guess this doesn’t help, but you’re not alone.

My DH is a Fibro sufferer, we’re definitely in the “just about managing” situation. DH is self employed which helps sometimes, though it can be very stressful not having enough work.

I do almost all the home and kid stuff as well as working. We recently got a cleaner every 2 weeks which has been life changing. We can’t really afford it but have given up a big chunk of our limited treats budget and it’s been worth it.

We are both angry and sad this has happened to us. DH is fatigued often and his life is understandably very constrained. I try to have a social life without taking the piss as it eases the inevitable resentment. Last new year we were at a friend’s house party and I was watching all the couples have fun. I was alone as poor DH had already gone home. I had to run up to the loo for a little cry as this just wasn’t the life that we both had planned.

On the upside there’s so much new research into Fibro (apologies I’m not sure about other conditions) and I’m able to hope that some more effective treatment is out there.

I hope I haven’t spoken out of turn as a spouse but there’s just nowhere to talk about this stuff.

I gave up work for a year (I have EDS and some wierd shit, possibly fibro too) as soon as I could afford it, but it didn't help my physical health really, wasn't good for my mental health, and not being able to afford stuff easily really didn't help (cleaner and quality convenience food is crucial), so I went back to work - I'm a civil servant partly because it's so flexible. I'm part time now and it works fairly well but I know I'll never be promoted because 1/4 of the time I'm stoned on painkillers - I can do the basics of my job, reacting to stuff, but all the strategic thinking, planning, making relationships, may not happen for a week or two. I'm a grade below where I'd have to manage that all the time.

Now waiting for tramadol to kick in so I can get dome kip.

It is very hard. I wish I had some wise words to offer but I have no clue what the answer is! Live with ME, fibro and chronic migraine and it is tough. Spent so many years now of my life being bedridden on and off, I had to stop working a long time ago, will never be able to have children with the hideous relapses I get. Many days I can’t even talk.
It was really interesting reading your post GreyCloudsToday and I’m glad you do try and have a life outside of it. It makes me sad my DH has had to do that too but I’m always grateful he has hobbies, friends, events to go to with me so incapacitated. It blights so much of normal life that he deserves that.

There are many days where I just wish it would all stop. It is so depressing after a long time. Unfortunately the world keeps on turning! for you all.

It's important to me to have a social life even if it is limited and causes a flare up. It's easy to stop doing things and then before you know it you've lost your confidence and you stop going out unless it's necessary.

I work on the premise that I don't want to just exist, I'd rather live and suffer and live and suffer, etc. because then there is some enjoyment in life. But it's hard to get the balance right, my physical health needs me to stay in bed but my mental health needs me to go out and see people.

My health improved immensely when I lost my job a few years ago and I was out of work for 6 months. So I can either work or have a normalish life. But I have to work

GreyClouds I think a break through is imminent so fingers crossed it won't be long now!

Are you able to be referred onto a pain management course at a hospital? I went on an inpatient course and found it really life changing as it covered so many approaches.

For me I really needed to recognise that pain is a part of my life not something to fight and accept that my life had changed (I was very active prior to becoming disabled after an incident).

The Explain Pain books (I actually asked for them as a birthday present!) are very good and you can sign up to free emails with advice.

I have done some pain management at the hospital, also done a 10 week outpatient rehab course and am due to do an 8 week pain management course.

What I've found though is that they encourage you to do pacing, to do relaxation, to exercise but also to do things that you enjoy and claim that by doing these things you will reduce pain.

But

What they don't tell you is how to do this.

I go to work and come home in the most unbearable pain. At that point I just want to go to bed and sink into oblivion. Instead I take pain killers and then force myself to do some exercise. Once I've done that I cannot do anymore.

I can't do any housework, cooking, shopping my husband has to do everything. That leaves me feeling useless and guilty for his life being ruined. He said to me that this isn't living it is existing.

I don't go out because it's just too painful, I am just too tired and feel ill from the immunosuporessants that I take and if I do force myself I end up too ill to work and that has to be my priority.

If I was in the position to give up work then maybe I could use the pain management techniques but being constrained with work how do you do it? No one can answer that. I just get the feeling that I have " failed" because I am not helped by these techniques.