Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I had an interesting experience last night. I was in a group of folks, and was chatting with two long-time friends. One of them has had surgery, two types of chemo, and now radiation over the last six months. (She should do fine after all is finished.) She was saying how much the "sunburn" she has from the radiation hurts. The other woman is dealing with an injury. It will heal soon, but is no fun in the meantime.
Anyway, they started talking about how much they hate it when something hurts, and saying that neither one could ever deal with chronic pain. (Neither one snapped to the realization that they were talking about my life, and both are aware of my situation.) I was floored. Especially after weeks and weeks of chemo, chronic pain seems like a tough road?
Every step I take hurts. Picking up a pencil and writing a sentence hurts. I knelt down to get a colander out of a cupboard last night and couldn't get up for a minute as my SI joints were screaming. I've lived with one kind of pain or another for almost half my life.
I just don't understand "nothing hurts" as the default setting for life. I'm not sure when I got to this point of, "Yeah, it all hurts. All the time. Big deal." Not to say there aren't times when I hate it, or that I wouldn't love for it to go away, but I guess I've just lowered my standards to the point where it amazes me to realize that other people find pain to be a foreign experience, and something to be avoided whenever possible.
Maybe having lost the fear of pain is a good thing. It's like delivering a baby. If you're fighting against the process or trying to control it, you are going to have a really lousy labor. If you can give in to it and realize that this is what it takes to get the baby born (or now, the colander out of the cabinet) you can do what you have to.
What is your relationship to pain? Do you fight against it, fear it, think it's a definite sign that something is dreadfully wrong? Is it just part of life, like taxes and traffic jams?
Anyway, they started talking about how much they hate it when something hurts, and saying that neither one could ever deal with chronic pain. (Neither one snapped to the realization that they were talking about my life, and both are aware of my situation.) I was floored. Especially after weeks and weeks of chemo, chronic pain seems like a tough road?
Every step I take hurts. Picking up a pencil and writing a sentence hurts. I knelt down to get a colander out of a cupboard last night and couldn't get up for a minute as my SI joints were screaming. I've lived with one kind of pain or another for almost half my life.
I just don't understand "nothing hurts" as the default setting for life. I'm not sure when I got to this point of, "Yeah, it all hurts. All the time. Big deal." Not to say there aren't times when I hate it, or that I wouldn't love for it to go away, but I guess I've just lowered my standards to the point where it amazes me to realize that other people find pain to be a foreign experience, and something to be avoided whenever possible.
Maybe having lost the fear of pain is a good thing. It's like delivering a baby. If you're fighting against the process or trying to control it, you are going to have a really lousy labor. If you can give in to it and realize that this is what it takes to get the baby born (or now, the colander out of the cabinet) you can do what you have to.
What is your relationship to pain? Do you fight against it, fear it, think it's a definite sign that something is dreadfully wrong? Is it just part of life, like taxes and traffic jams?
My mom has lymphoma. Her hip is disfigured from it and it will never not hurt..
My dad had a section of his colon removed and has terrible OA in his knees. He has all kinds of colon issues and lives on advil most days with the knees.
My husband has no chronic disease, but his hands hurt all the time from regular OA.
People I work with have similar stories.
While we do have chronic pain WAY before it's our time, I think we are in the company of many...and definitely as we age, even more join in.
The physical pain I've come to realize will always be there. I've watched my grandmother and my mother suffer with RA and OA for over 30 years, and so pain (or watching other people's pain) has always been a part of life. I'm not nearly as stoic as they've been, but I guess I'm not afraid of it. If I'm fortunate enough to have a child, I'll have to look up this thread again and see how I feel about pain then ;)
Sometime after that, I became afraid to walk at all, fearing those bones would collapse. I justified it because the few websites I could find on RMO also told me that rest and elevation were the only things that might cause the RMO to go into remission.
By the time I got the RA diagnosis, I realized I had pain even when I was resting and elevating, but I didn't realize the fear had been growing in me all this time, say 13 months. Finally, the podiatrist discharged me to a rheumy because, frankly, he was scared and knew he couldn't help the RMO, but also because my MRI showed changes that suggested RA.
When I finally got to meet my rheumy, one of the first questions I asked was if I had to wear the orthotics so the bones in my feet wouldn't collapse. She told me it was a good idea, but that she wanted to see the MRIs first. She sensed my fear, and we talked about it. She told me not to fear breaking the bones as long as I was wearing the orthotics... and THAT was like a 1000 lb. weight being lifted from me!
Now, I have pain and I do stuff with the pain, but I don't fear it. I can't walk much because it aggravates the RMO, but I don't *fear* the pain. And I consider that a HUGE gift!
I don't like having pain, and it sometimes makes me nostalgic to see people on TV running, skipping, playing and laughing all at the same time... but I can bear it. A lot of that is a direct result of finding this board, too.
I know even if I did not have to go to work full time and just stayed home, I still have weekends when I am in bed all weekend with pain. There are several of us at work some are not near retirement and they have FMLA's in just as myself because of one chronic illness or another. So God help us all when we really get old and things start to fail. Cannot image how we will manage. Guess we should take one day at a time......
=)
Lin
my brother had that subburn radiation and also got through to the other side. I am rooting for your friend.
I worry about my kids who are still both barely into college and the affect my journey is having on them and if I can disguise pain or mitigate it or not talk to them about it and play pretend when they pass in and out all the better. how i handle my relationship to pain is directly related to how well I single parent. I can't afford to marry the pain emotionally and commit to it heart and soul or I will lose my entire house of cards and so will they. i am hoping these coping skills serve me well when I am older, but I don't know.
i liked your analogy to birthing. i have a meditation pose that i use with RA when I am at my worse that involves stilling and placing palms up to just ride it out. sounds silly but when my friends see me like that they leave me alone.
I also realize now that losing good breath is a good deal scarier, to myself, than chronic pain. the chronic pain I could push through sometimes, try as hard as I can, I can not will my oxygen sat's back up. this has put the see saw perspective of my pain into closer focus for myself.
good thread
Before RA I was a horse trainer. So always had a bruise there - sore joint here - broken bones...etc . So pain from the physical demands of what I loved to do was expected. I guess between that and seeing my mom triumph over advanced RA - made it easier for me to accept my own diagnosis.
The first med I was on kept the RA down to 2-5 joints per day for most of the first decade. Lynne, your comments about the orthodics hits too close to home here. Forced to depend on them starting in 2004, since my RA targeted feet first. Now because of nexium + prednisone use - the orthodics themselves will cause stress fractures in my feet. So can't use them now.
Guess I viewed chronic pain as just a challenge to get through each day. It is what it is as they say. The afternoon energy crash was harder to get used to - but even that became normal.
It was actually more of a shock to experience full remission after all those years. Every morning I'd stand up and wiggle every joint - just sure something would twinge. I'd be waiting all day for an ankle or wrist or thumb to ache. It was actually like the pain had been so ingrained that my brain didn't know how to live without it. A little over a year has passed now and the brief flares I've had always remind me to be thankful for this period of health.
It's kindve weird being the person who works right through flu, stress fractures and stomach bugs - since my RA and IBS taught me to live with those symptoms as my previous normal state and just keep pushing on. Most of the time I just think its a quick flare until fellow staff members talk about same symptoms plaguing their household.
On the flip side, I live in nyc and am always in pain. I just spent a week in az and there were times I forgot I had RA. My body felt so much better there. This is the second time it's happened and I suspect I will eventually relocate to a warm, dry climate. Have others felt this kind of improvement from weather alone?
And on your friend, I was telling myself, at least it isn't cancer! And here's someone in radiation complaining about the idea of your, all of ours existence. Wow.
I've gotten better With most the fear scenarios. The what ifs into the future will take you down a rocky road I've learned the hard way and that staying present to what is is my goal and staying flexible as my needs change. I fell accidentally last September on my front porch tripping over a cord that pulled my feet out from under me and broke...really broke...my hip. Direct shot, I had never experienced such intense pain when it broke again when they lifted me onto the X-ray table and it kept escalating...I've never screamed out in pain before...that was a first. I never had a chance to fear it in the moment, i was just moving with it and when it was under control I was grateful. I think I didn't have time to be afraid but I have had the chance since then to think about pain at a level I didn't know existed and the what if something like that happened again in the future. Those what ifs around fear scenarios get me from time to time. I'm not immune. Acceptance and letting go of resistance are hard lessons. I have a perfect hip now albeit finding osteoporosis and bones 20 yeArs older than I am, ugh, but the gift was something needed to change in the game plan. ( like a new hip maybe?:) and taking care of the Osteo. iThe other blessing now is that my chronic pain most days feels much less significant after making it through the hip scenario. it's all a part of our bumpy road and I agree with Sally, we are all RA warriors at our best doing what we need to do alongside the pain!(and/fear if it rears it's ugly head.)
I find Lynne's comment interesting, where pain is a sign something could possibly break. I think there's a danger for most of us in ignoring things that really should be seen and treated.
So many people have brought up the emotional reaction to pain, whether fighting against it, fearing it, being angry about it. The key to coexisiting with pain is no doubt in defusing the emotional reaction. It is what it is. Fighting it won't make it go away, and will make it harder to live with.
maybe also try this mindset about chronic pain (and not the pain the billboards are marketing to)
forget about the fighting as pertains to emotional responses to pain and skip or default straight to: tangible losses
like when someone loses their job, loses their career, loses their relationship, loses custody, loses a home - true they haven't lost their life, but for some folks the pain comes with loss of function and this can sometime cause a spiraling effect. sometimes.
for those who it has not, great. but for those who it has, and for whom safety nets do not magically appear, I can't imagine
depot
Loss, the response to it, emotionally and practically, is huge. With physical pain, an emotional reaction to it generally isn't helpful. With loss of function, loss of job or insurance, loss of family & friends, going straight to grief and fear is reasonable, maybe necessary. And yes, it makes physical pain harder to cope with.