Living with chronic pain is exhausting

[Wajeehakamran]

Does anyone else find that chronic pain affects so much more than just the physical side of things?

Some days I can manage things fairly well, and other days even the simplest tasks feel like a struggle. The hardest part is that people don't always understand how much it affects your daily life, especially when you look fine on the outside.

How do you manage on the difficult days? Have you found anything that genuinely helps you cope, both physically and mentally?

Chronic pain is not explainable to people because no matter what you say, they cannot understand the intensity of it. It is better to take some time out for yourself everyday. Spend a few minutes walking or invest your time in deep breathing. These tips sounds tiny but they work like magic. This is simple to follow and also has a positive impact on your health.

Journaling has been relieving my mental stress or burden to some extend. For physical pain I guess physiotherapy works if that is to a specific body part.

The Pain Management Programme provided by my local NHS Trust was excellent. The referral route was a bit of a nightmare to navigate (it transpired it had to be done via my GP after a recommendation from a consultant, and that surprised both of them ) but it was so worthwhile.

It combined individual therapy with group therapy, mindfulness (brilliant), physio and Tai Chi. Sounds wanky but it helped hugely.

I have given up explaining how life with cronic pain is.

It's 16 years for me.
I'm currently investigating mast cell activation syndrome with my pain specialist.
I get trigger point injections to help cope and take Rx meds.

https://www.mastcellaction.org/coping-with-pain

I have a certain constant but manageable level of pain, but flare ups mean I’ve probably been bedbound with it about ten weeks this year (5-10 days a time) and then at least one day a week, sometimes more. It’s been several years now, but I still find it hard and a “surprise” when I’m just trying to get through the next ten minutes of pain. Most of all, because I get such a mix of random pains and rapid exacerbation of existing pain, I’m never sure when to seek medical attention. I also have POTS and post exertional malaise, so will usually try strong meds to try to sleep through the pain when it becomes all encompassing as even going to hospital can make my baseline worse. Long covid is an absolute fucking bastard.

@Saturdaysfairiesyou’re right, people are lucky enough not to be in pain don’t understand. A friend of mine once asked me “You know you said you’re in constant pain, is it all the time?” 🙄

@AutumnCrowningI’m jealous the pain management programme worked for you. For me it was just a waste of 7 days’ previous annual leave.

Nothing works. I’ve tried tramadol, liquid morphine, pain patches, even had right injections into my spine - which wore off in less than a week. It used to be that lying down would help when it got really bad, but even lying down hurts now.

All of the above. And what's also exhausting is dealing with the NHS, long waiting lists, long periods without treatment or input, having to micromanage appointments, burnt out and disbelieving doctors who don't care or don't know what's wrong with you or who tell you that they know more about your medical condition that they do, and doctors that try to discharge you without solving your problem. My mental health is shot and my anxiety is through the roof.

I have migraine, vulvodynia and what seemed to be a straighforward hamstring injury that I finally got an MRI for and now they don't really know what it is but it isn't the hamstring so the last 18 months of hamstring rehab was a waste of time. I have no hope that any of it will get better. I've been in constant pain for over 4 years with the vulvodynia and over 2 with the "hamstring". I'm thankful that medical cannabis helps a bit with the vulvodynia but I am scared it will be taken away if I reveal the extent of my mental health problems.

I'm not a medic, but you sound like someone I know with inflammatory arthritis. Sorry if you'd rather people didn't comment, will go back to minding my own business. But to answer you OP, in many ways I think it's worse if your pain is linked to something people haven't heard of/not easily identified.

If I sit still and do nothing for a few days my pain settles down, if I try to do anything or go anywhere it gets worse. Either way, it is a bit miserable. However, this concept is apparently incomprehensible to health care professionals. After 5 years I have given up.