Chronic pain and pacing

[Aroseforemily]

I suffer from chronic pain due to an accident 2 years ago and I'm so fucking fed up of it.

I need to lose weight but do that I have to move, which I can't do because of the pain. My main pain relief is zomorph, with oramorph for breakthrough pain, as well as paracetamol and ibuprofen. When I ask my GP for a referral to the pain clinic I'm put off and told to try yet another drug.
So far it's been: cocodamol, naproxen, morphine patches, tramadol, gabapentin. All of which gave me more side effects than benefits.

I feel I've hit rock bottom, on a good day I can get loads done so I overdo it and then end up in bed for 3 or 4 days.

In the last couple of days I've been reading about a pain management system called pacing, where you get a baseline of what you can do before the pain gets too much and then the theory is that you can pace yourself. This means you stop before the pain gets too bad, causing a flare up.

I was so positive about it yesterday, when I didn't have too much pain, but today when I am hurting I just feel what's the point.

I'm not depressed, been there done that and I know how it manifests in me.

I would ask for a referral to a pain clinic again and also Occupational Therapy as they should work together well.

How about gentle yoga-like stretches or swimming? Don't underestimate how much massage can help as well, even if your muscles aren't where your pain is - they usually tense up in chronic pain and exacerbate it.

Hi Emily, sorry you're having such a shit time chronic pain is hideous to live with.

I work in a pain management team and I'd recommend asking your GP again for a referral to your pain team. It's an area where things are changing quite a lot in the way we teach people how to manage their pain and your GP may not even know what is available to you. In our team we have pain specialists who can advise on the right medication regime, exercises and lifestyle stuff. We also have psychotherapists who can help with the emotional aspects of living with pain.

Are you happy that you understand how to use pacing? Holler if you want to clarify anything.

This website is excellent: Pain Toolkit and there are videos on the different 'tools', including pacing.

I also recommend this book: Overcoming Chronic Pain which looks at all the different ways pain can affect people, including the way we think about our pain. Understanding the thought processes in how you think about your pain might really help in coming to terms with what has happened to you and also in helping you to gain some quality of life back.

PM if you have any questions or ask here. I wish you all the best, it's a horrendous thing to have to go through. Get all the help you can.

@SaltandPepperRibs Thank you.

I've had a much better day today, less pain which means my mood is better.

I've been using the pain toolkit, it is very good, and I'll make a note of the book.
No I don't think I properly understand pacing please correct me if I've got it wrong. The morphine makes my brain foggy!

I looked at the tasks I need to do, so standing, walking, sitting at a table to eat / write etc. I timed how long I could do until it was unbearable , I did this on a good day and a bad. I can stand still for 10 minutes on a good day and 2 on a bad. So I aim to stand for between 2 and 8 minutes (80%). Then each week I'll increase the timings by 10%

I understand that it's all about stopping the peaks and troughs of too much activity on a good day leading to flare ups which is definitely what I do, and to slowly increase my stamina.

It's so draining, I know the morphine makes me tired but it's not even 8pm and I'm tucked up in bed.

oh I'm glad you had a better day!

Yes, pacing is about stopping peaks and troughs, so aiming to do less on a good day, but more on a bad day. The idea is to keep moving, keep doing where you can, but stop BEFORE it causes you pain.

There's no right or wrong way to do it, but I would take your 2 minutes as a baseline because that is what you can do every day, whether it's a good or a bad day. So using that, you'd start at doing about 1.5 minutes a day and build up gently from there.

Or another way to do it could be taking an average over, say, 10 days. This might give you an average baseline of about 4 minutes to build from.

I know 1.5 minutes might seem nothing to you, but be kind to yourself and give yourself permission to take it slowly. Often people are so caught up in thinking about all the things they 'should' be doing, that they push themselves too far and end up in bed for three days afterwards. The inactivity of resting too much can cause very rapid muscle de-conditioning, so that's what we're trying to avoid. Slow and steady wins the race

You've been through a physically and emotionally tough time. Give yourself a break, be kind to yourself. Little and often will get you further than boom and bust.

Thanks for taking the time to reply. I'm seeing the GP next month so will push for a pain clinic referal.