Chronic pain, I really need some advice please

[Wanttobeanon123]

Posted in aibu for traffic. Hope that's ok.

I have a chronic pain condition (endometriosis). It affects me daily. I don't know how the pain will be one day till the next. I take routine and prescription painkillers daily, varying the amounts as needed.

I have been diagnosed for 20 years. I am currently waiting for my 8th op to reduce the pain. The ops work but the pain comes back.

I am very lucky to have been able to have 2 kids as a result of the surgery too.

My question is about dealing with cronic pain. I always carry on regardless. I work full time and have taken 1 day off in the last 4 years. I keep going doing everything that needs doing, working, cleaning, dealing with the kids etc. The last 4 days have been worse than usual.

I have just snapped (ok, shouted, for a while) at my other half. I just feel like I am on a short fuse today. I am tired, in pain and just a bit fed up. His response was that he would never snap at me or the kids no matter how he felt.

My response was that he has absolutely no idea what it is to live like this, and to just keep going regardless.

I don't see any point in taking time out, or time off work etc, it won't make the pain any better.

I just want to know if I am being unreasonable. How should I cope with this? Anyone else got any experience of a situation like this?

I feel shit for shouting at him, I really do. He is a great husband and father, pulls his weight etc. Just right now I want to hide and scream and cry and he doesn't understand. And I just want this feeling to go away. The pain I can cope with, the frustration and anger not so much clearly!

Anyone got any pearls of wisdom for me? I would really appreciate some advice X

I don’t think it’s easy for family to understand why you’re not “fixed” after multiple interventions. In my experience, people start to feel a bit like you’re being a drama llama because otherwise surely the doctors would have mended you by now. I’m not saying your DH necessarily thinks that but I think it’s easy for family and friends to look at you functioning and carrying on and think that you’re not so bad. They don’t have any idea what it’s like to fight every second of every day, or the absolute exhaustion that comes from just living with constant pain.

So, my shitty bit of advice which I know sounds ridiculous is to make some time for yourself each day (I know, I know) to do some meditation/mindfulness to help your brain calm down a bit from the effects of constant pain. I actually found Curable really helpful but there’s a lot of good free stuff out there like Insight Timer. I used to need about 30 mins before I relaxed out of the constant “fight” mode that you go into when something is hurting all the time. It’s not a miracle cure but it helped me a lot and helped me calmer when dealing with others. Sorry it’s so shit

I'm so sorry, OP. That must be incredibly hard to live with.

I second the suggestion for mindfulness - Jon Kabat-Zinn's 'full catastrophe living' was written in response to people living with chronic pain, I believe.

Also, a bit out there, and feel free to ignore, but maybe worth looking into Mayan Abdominal massage? Really helped me with fibroids, I hear can be good for endo, too.

All the best.

Thanks so much for your reply. It means a lot to me.
I think you are perhaps right, I am super bored of it all, so I am sure others are lol. I do almost always lie when people ask me how I am, often because I can't be arsed to talk about it, and of course I am British and must always say I am fine when I am not!

For some reason it has all got too much for me today. I will look into curable. Thanks for the recommendation.

You talk as if from experience, sending much love X

Thanks Arabella, will look into those too. Although abdominal massage would probably end up in poops! (Tmi?!). Anything is worth a try though.

Usually the painkillers handle the pain in the main, think today I am just extra fed up of having to think about the next dose all the time, then the other medications I have to take with it to be able to stay regular, and then drink enough water so the medication doesn't destroy my stomach lining etc etc. Even when I want to forget about it I can't if you see what I mean.

Tomorrow is another day. But I will look into your recommendations now. Thanks so much X X X

I suffer from chronic pain too - not endometriosis, but nerve pain. I’ve had 4 spinal surgeries, over the last 9 years, with varying levels of success.

I don’t think anyone understands chronic pain, unless they suffer from it. As much as loved ones want to, they don’t get quite how exhausted it makes you. I think you just get utterly worn out; well, I do. That makes me grouchy too, and I do snap sometimes, even though I don’t mean to.

If I’m being honest, I’m not sure I’ve ever found something to help. I’ve done Pain Clinic, but we had a basic disagreement on my relationship with my pain. They wanted me to ‘embrace it’; I want it to fuck off. 🤷🏻‍♀️

If you find mindfulness helps, or CBT (which I do find has helped a bit), or massage, or whatever - then do it. The biggest thing would be trying to ensure your husband does understand how it affects you, and that sometimes you may act slightly put of character. For people that don’t know me well, they don’t know about my pain - but sometimes putting a brace face on everything isn’t the most helpful approach for your own sanity/relationships.

Just wishing you as good health as possible, and that you can find a way to manage things. Take Care.

There is a chronic pain board now, under General health - you might find support there, especially regarding attitudes of others.

I know you didn't ask for help with the pain, but if the pain was better managed you might feel you can cope better (you are coping amazingly well already). Are you on slow release pain meds? You do still have to think about the next dose but generally they keep your levels topped up. Particularly good if you're in pain all the time, not just with periods.

I have endo (and other chronic pain problems) and am on good pain meds (slow release every 8 hours) plus long-term Synarel, which puts you into a menopausal state. Long-term use is controversial but has given me my life back.

If you are treated at an endo centre do they offer specialised physio? My friend does this and says it made a big difference, both pre-and post a massive surgery. We're not in the U.K. though.

Hi OP. I k is how you feel. I have only had 2 ops for my endometriosis, which was everywhere - over ten locations in pelvis and outside pelvis (even on diaphragm).
I also have 7 other conditions on top of the endometriosis. Living is exhausting.
No no one understands unless they suffer too. No answers but solidarity and YANBU, it is exhausting battling through life every day.

Endo is awful im just about to have my 3rd op previous Dr refused to refer me. As yet I've not been prescribed any painkillers that actually make a slight difference after 16 years.
I agree with others a bit of self care whether it be a bath or a walk if your physically up to that or even read a book. I found many people don't understand like a PP said as they cant physically see you are unwell.

Try sitting down and explaining. How it makes you feel frustrated
I have a couple of chronic illnesses that wear me out and I managed to explain it by saying a completely calm person is at 0, and end of the tether is 100. So road rage takes you up to 25, a bad day at work on top of that 50., and when you get to 100 you explode. But pain and frustration means you are starting off at say 90, so the smallest thing is the end of your tether because you are so uncomfortable already

I know the pain of endometriosis.
I also know and suffer from a different chronic pain.
I've really no advice other than what's already here,
but I've said a little prayer for you. 🙏
& an un-MNetty hug

You sound like you have burn out from managing your condition. It's so common with long term illnesses. You need to take time for yourself, to recharge the batteries and your mind . Feeling like this is perfectly normal , so please don't beat yourself up any further. Chronic pain is hard and so wearing. I'm 12 years into it and i still have days where I have a cry because I'm just so fed up of trying to battle with it. Sometimes that cry is so refreshing, it's like a release

Your DH says he would never snap, but he hasn’t been in pain for 20 years so he can’t possibly know what he’d do.

I like the analogy about starting your day at 90, can you explain it to him like that?

I don’t have endo but I do have a different chronic pain condition and it is just so wearing. I’m having a flare-up at the moment and as a PP said, I don’t want to embrace it, I want it to fuck off!

My DH found great relief at the pain clinic, dialectical behaviour therapy really worked for him, but it's such a personal thing. Might be worth asking for a referral though?

We also found it helpful to add as many extra resources into the family too, a cleaner does DH share, i batch cook, we book extra childcare. When DH has DBT I had therapy too, as a PP posted managing pain long term can change relationships too. You all need as much extra slack as possible since it's so much extra bandwidth (but of course especially for you, since you're the one in pain).

Long term spinal pain here. I try extremely hard not to snap or grouch too much but obviously we are all human. Can you try to remove yourself from tense situations when you are feeling awful?

I’ve done all the pain management stuff, some of which is helpful. It’s all worth a shot. Heat is my best friend, do heat patches help your pain?

Good luck with your treatment and try to remember to notice and say thanks when DH does go beyond- I’m sure you do but I think it’s worth keeping in mind.

Thanks for all your replies. I really appreciate it. I will take all your suggestions and advice on board.

But for today, I went out with the girls, drank a bit too much prosecco and had a much needed laugh! Pain is still very much there but life does not feel so hard today!

Thanks for being there for me X X X

I live with chronic pain , it's very annoying but I just keep going . What alternative is there! 🙄

Did you know there is a persistent pain clinic you can self refer to on the nhs ? They referred me to a fibromyalgia specialist and although I'm still in pain it kind of helped to know I'm not suffering with something awful .

If I’m being honest, I’m not sure I’ve ever found something to help. I’ve done Pain Clinic, but we had a basic disagreement on my relationship with my pain. They wanted me to ‘embrace it’; I want it to fuck off.

I’ve had this too. And was then refused any and all further treatment for a time because I ‘wasn’t fully committed’ to the programme. I’m glad it helped some but it didn’t help me.

I’ve had spinal osteoarthritis for more than 30 years and have developed coping strategies but nothing will ever remove or resolve the pain entirely although I’ve recently found a truly wonderful osteopath who is literally a lifesaver and is helping me cope a bit better.

And yes, people do get a form of compassion fatigue and get bored by hearing the same thing over again. I’m fed up with hearing it myself. People don’t really understand why I just don’t go and get it ‘fixed’. I don’t really talk about it tbh.

And I’m sorry you’re going through this @wanttobeanon123

You would be very welcome on daily chat drop in on chronic pain boards. The speed thing is really good it’s hard starting day at 90% capacity of patience and strength. Knowing each day going be awful,really awful, or utterly horrendous and the only fun is finding out which one it will be. X