I am starting this thread for the following reasons:
1) As a place to exchange information about ways to cope with pain (especially chronic and/or severe pain).
2) As a place to give and/or ask for support.
3) To help myself and others track their progress/efforts (which can help identify pattens and help deal with times that are worse...also see reason#2 when this occurs)
#1 exchange information about coping with pain:
* Remember that pain cycles come/go in waves. Sometimes bad pain can last a really long time, and it's easy to forget the good times...but try to remember times in your life you have felt better and work to convince yourself that this (whatever this is whather it is a new injury or something you have struggled with for years-or both...whatever it is you are suffering, convince youself that this is the lowpoint on a sign wave....you have been on the upcurb before and will again...)
* If you were born on a downcurve, focus on what you think could be. Doctors didn't think I'd walk at all when I was born, but I became a ski instructor, an although it has been hard for me to believe it could be possible...I try to remember to set my signs on the slopes and work toward skiing again. Personally I am very inspired by someone with CP who is absolutely adamant that someday he will walk. He does not let the severe effects of his condition stop him from scuba diving, skiing, sky-diving and he is certain his continued efforts in adaptive spots will help him to one day be able to walk. He's never walked before, his doctors say he can't...but with his attitude, I believe he will someday.
* Focus on NOW. Don't worry about pain you've had in the past, how long it's been, or how long it might be...focus on just right now. Just this very minute. Evaluate how good/bad you CURRENTLY feel in and at this moment. If you are hurting, identify where/why and begin taking steps (even if you don't think they will work) toward dealing with it (ice/heat, TENS, schedule a massage, accupuncture, craniosacral therapy, physical therapy, seeing a pain management specialist-including following through on things like triggerpoint injections, epidurals...whatever you/your dr think is right for you. And if the last thing didn't work, keep trying while also reaching out for support to keep hope toward trying<---words of a person who just a few days ago had no hope, felt the pain would never go away....but I tried another treatment and it hurt but helped more than it hurt. Even if it doesn't fix everything, it was worth doing...the last treatment I had had left me in months of agony-I felt like giving up and was sure that since that last treatment hurt so bad I didn't want this one...but this time it was worth it, so know that I'm not belitling your pain when I try to help you minimize it by staying in the moment and staying focused on trying whatever you can today/right now whether it's trying an old thing again b/c today is a different day or trying something new because you've already tried x repeatedly...it can sometimes be hard, but try to stay in the now, today, this moment and find one thing you can do for yourself. then the next moment do another thing, then another...focus on what you want or can do for yourself right now in this moment (and if painful like some PT can be, then focus on how what you are doing NOW is actively doing something to improve your future...go ahead and feel good about the investment you are making right now and appreciate yourself in that moment for what you are doing even if it doesn't immediately pay off. If it helps, give yourself a hug (or pat or rub...whatever feels good to you, even if it's just putting yourself in your most comfortable position to comfort yourself, do it) and tell yourself thats a hug from you in the future when you feel better (lke the future that feels better comforting the current you that is doing the work and going through the trenches). It can be hard to look from the trenches toward the future, so maybe try thinking from the perspective of a future me/you that doesn't hurt coming to visit...what would they say? what would they do? ...probably tell you to do one more round of your excercises even though it hurts and offer a hug as a thank you for doing it even though it sucks. They'd probably make you call your doctor when you know you need to but have been putting it off because __fill in blank with what seem like justifyiable reasons...but your future self calls BS and hands you the phone__ ....it might be a way to give yourself the hard kick in the pants to do what you need to while also loving yourself for being willing to.
* My doctor said, "Just focus on things other than the pain. Think about life, not pain." I replied that's easier said than done, but that I appreciate the point. The thing is, this is really important. When in pain, it's SOOOOOOOOOOOoooooooooooooooo hard to do....but (once you have done EVERYTHING on your list of things to do to help ease your pain/long term improve your condition, repeatedly, until they are no longer of benefit to you, looked for and tried/exhausted new options and have done literally everything upteen times) then there is a point of acceptance that involves finding ways to connect to life despite the severity of your condition.This may involve friends/family, religion, volunteering....find SOMETHING that mkes you feel like life is worth living and focus on and expand that vitality, that life, that joy that that that thing bring you-and keep trying repeatedly and/or different things if it doesn't immediately help you feel better-unfortunately these things take some.
* Make a list of reasons it's important for you to continue to try, then read over that when hopeflessness creeps in.
#2 Give/Ask for Help
My Give: Starting this thread is out of love for myself and others.
My Ask: Please do not pity me, or allow me to pity myself. However, offer your support as things have been really tough. I need people to remind me to apply the advice I give others to my own life.
I need people to check-in with me so that I feel connection with others and feel cared about.
I need to shake a current slump of depression, retrain my mind to deal with each individual moment instead of keep saying "I'm in pain" "I've been in pain forever" etc...I need to start doing things again (PT, social, household chores, everything). I need to retrain my brain to "I can" instead of can't as first-line, then deal with situations where I really can't...but I need to push my boundaries instead of let them close in on me...need to do more to deal with the pain not do less because I'm in pain....so I guess for this one I am asking for encouragement, opportunity to be strong and supprt others (meanwhile pulling myself up along with every individual I help and each strong statment I make), and any suggestions people having for changing automatic negative thoughts like these.
I need people to help make sure I follow through with making and keeping important medical appointments (PT, accupuncture, mental health care, everything I can possibly do I need to keep the fire lit to do EVERYTHING). <--family/friends are working on this, but it never hurts to have more people checking in in a supportive way
THANKS, in advance
#3 Track progress/efforts
I have a long history with pain. My first operation was when I was just a few months old, and by my teen years I had almost as many surgeries as birthdays. I've dealt with a number of things over the years, and am just now starting to see how my differnt conditions (foot, knee, hip, back, neck, psychiatric) are all interlinked. We have always known that my foot problem caused leg-length discrepency-but just now discovere it is NOT the leg with the severe club foot that is short, it's the "normal" leg....so we have been correcting it the wrong direction! Correcting this is leading to major improvements in posture, which have drastically reduced my pain. However, my brain will aknowledge that then go right back to thinking I've had this pain forever, gonna have it forever....the negative thougths I've labeled "pain brain." Right now my physical pain is reduced, and I need to convince my mind of that so that I get full benefit out of my treatments and continue to improve.
That history sumarizing many years worth of progress/efforts, here are the most recent efforts:
DATE: Summer 2013
WHAT I DID: Got care for my back/neck instead of just the more obvious problems of my foot, knees, and other areas that have had surgeries. Started the ball rolling toward getting an MRI, getting into pain managment, and taking a more active role in dealing with the pain instead of trying to pretend it didn't exist (which CAN be a skill, but only if you've really legitimately tried everything, not just think you've tried everything which is where I was in months preceeding)
IMPROVEMENT: None at first, then felt good, then bad, then horrible...now relatively better and working my way back up
DATE: September 2013
WHAT I DID: Finally started going to pain management in addition to already established PT, craniosacral therapy, etc
IMPROVEMENT: None (at first). Made me worse September-November 25, 2013.
DATE: November 25
WHAT I DID: Even though my experience with injections has been HORRIBLE, I allowed them to try triggerpoint injections. This helped immensely until my muscles (and mind from so many years of having to be careful not to hurt myself) instinctively began splinting...I have worked all day to continue to relax, remind myself that it IS ok to move now...the pain isn't what it has been, FEEL how it is NOW, do what I can for the now. I started this (which was empowring for me and also a gift to all of you).
IMPROVEMENT: Significant, but still struggling.My improvement has gone from literally suicidal (had a severe headache every day since October...during which time I had had accupuncture, craniosacral,pt, ice, TENS, chiropractic, mental health care...everything I could think of and I couldn't see any way out of the pain, couldn't see any future, and fell into a very bad depression where I saw no worth in me anymore, no hope for regaining who I used to be, etc....)....then I had this treatment and the headache went away fully for a second so I know it's possible, and now is much more manageable.. I'm tipping between a "I'm totally fine, just stop worrying about my neck/back and just go do things without regard for pain" attitude and realizing that although my doctor has told me to increase activity, he did say to work up to it slowly and pain (when really present and as strongly as I perceive it to be) is there for a reason...I guess right now I'm seeking the balance thereof and to do whatever I can to improve/maintain the benefit of this treatment.
In the next few days, I need to:
* Practice slowly moving my neck and finding out where my boundaries really are. Tell myself I'm going slow, not going to go past discomfort to pain (and in fact once I find discomfort back off sliglthy to it remains a pleasant stretch/exploration. I need to do this regularly to find out how my body really is now (my mind is trained to think it's broken, hurts, need to be careful, etc...but the reality is that I need to be careful/slow in pushing/exploring my new post-procedure boundaries)
* I need to do every form of PT I've ever been shown, and not give up just because it sucks (unless one specific thing really HURTS in a way I think might be bad, then I'll do all other excercises/stretches/etc and ask about the thing that hurt hurts)
* I need to try to sleep even though it is difficult for me to fall/stay asleep, I need to work on relaxation techniques to get there.
* Continue ice/heat, TENS, meds as needed, stetching...everything you have been doing and can possibly think of to do, do it...don't just think about doing it...do it!
I'm hoping that the way that I have formated this may be helpful to others. It can be hard to figure out how to say what you need to when you're in pain....but I think this is laid out fairly clearly, and if everyone followed the format everyone who posted would both give and receive
(Welecomed though not necesary...sometimes we just can't, but please try