I just read through all the new replies and someone said something along the line of not remembering how to explain the pain when the pain isn’t as bad… I’ve been thinking about that… and it’s something I struggle with too… and now I can’t find it anymore!
When I’m in pain I constantly think of ways to explain how it feels… even when that’s impossible… (all I can come up with is biting my arm hard enough until the pain is comparable… but then that’s a different pain… and people would think I’m crazy… )
But then the pain is less or different… and I can barely remember it! And whatever I thought of to explain it seems silly and an exaggeration… (when the pain comes back it feels more like an underestimation…)
I always figured I was just crazy/an idiot/stupid (which is my go to answer for everything)… but is this something that’s common?
Very, very, very common. Not that I’ve ever given birth but ask any woman who has as apparently if they remembered the pain properly they’d never go on to have yet another child.
I’m sure it’s very common! Why would anyone want to remember pain? We’re probably hard-wired to forget it or at least to tone down the memory.
I once listened to a radio programme about how people describe pain. The conclusion was that the way patients describe pain can be so individual and idiosyncratic that doctors have a really hard time understanding what on earth we’re on about sometimes. But also that it’s not an easy thing to nail. I guess we have to write it down at the time in the clearest way possible, I hate doing that but I don’t see any other option.
Don’t forget function. I doubt there are many activities that pain alone renders physically impossible. And that can be where self-doubt creeps in if we start thinking that other more worthy beings would have pushed through and got on with it, whatever ‘it’ is, despite pain. But realistically most of us do push ourselves, I’m pretty sure you do, and yet pain will impact on how much we can do and how effectively we do it.
Sometimes the more enjoyable things are the first to go because we may see them as optional extras, losing enjoyment in anything … work, sex, socialising, due to pain has got to be worth mentioning. Then there’s sleep. I bet I could run a mile surprisingly fast if I was going to collect a huge lottery win, but it’s hard to sleep if even a few bits and pieces are aching.
Anyway, trust yourself and if I recall you have a very insightful and PsA-aware rheumy don’t you? That’s got to help with communication.
I’ve never had much luck describing the pain to a medical professional (maybe 2 of 14 have got it - and neither has been the Rheumy or Heamatologist - which are both in control of the critical medication).
I have had success in describing lack of function though, and have spent more time in medical appointments to rule out other reasons for lack of function (3 hours just this morning), than I have in rheumatology or hematology appointments, to ‘prove’ I need to be treated.
It’s not fair, but, it is. They are difficult hooks to jump through, but I do find the function hoops are less a moving goalpost than the pain hoops.
Yes, I agree. I always found it was very hard to describe the pain when the moment had passed. I started using an app on my phone to record pain, the level, and symptoms. It even had an area for causes. It did help me see when and why my most common pain happened. It was also a great tool for my doctor.
The function thing is difficult as well… I wouldn’t be able to tell you all the things I automatically do different… I didn’t realise I was standing up differently when the fysio said to move my feet back before standing up from a chair… (wait there’s people who can do that and easily enough so that that is the normal way for them!!!)
I tried several apps… And they take up soo much time… especially the once were you can point to where it hurts… and the others are to shallow… On top of that I just forget to do it… it feels like I only just did it for three days…
Ugh, yes, the pain that was so bad you remember it being so bad that you feel like you couldn’t handle going through it again! But, when trying to describe it after the fact words can’t make it seem as horrible. And maybe that’s a good thing?
I baby my back the most. At the time my back went out, I truly thought I might end up on a wheelchair for the rest of my life. I know it was bad but thank god can not relive the pain. Same with the neuropathy in my feet–IDK how to avoid that if it happens again, but I know the pain nearly brought me to tears many times…I don’t cry from pain, so that was pretty bad.
The nagging pain and discomfort–those that are between 4 and 7 on a pain scale of 1 to 10–those are what can make me crazy and depressed. Because they’re always there and they’re not severe enough to completely immobilize you but they can definitely make you sad. Even my ears ringing–they’re ringing so loud right now I can hardly ignore it–there’s no pain but the annoyance is at least an 8 on the annoyance pain scale!!!
I think we PsA sufferers have definitely dealt with more pain than most people. And nobody seems to understand. I don’t think most doctors even realize how bad it is. Although, I have to say my internal medicine doctor sure seemed sympathetic at my llast physical. She’s not your typical doctor, though!
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