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?
Otherwise avoidance. I try to avoid situations where pain and I spend active time together. When we have to do things together I try to be civil. I work round the unpleasantness, try to hide the bad vibe. People dont want to know.
Pre-planning, calculation, scheming. Colander from cupboard? Relocate colander? Avoid using? (I rarely drain vegetables now as have an almost waterless way of cooking them and use a lot of silicon cookware). I have surrendered certain values - plastic? Put on earth by the Good Lord to Save Me Pain.
If trapped in embarrassment - eg down on floor loving up arthritic cat of the imminent deadline - unfortunately - act like the cat. Roll over (well it cant,), relax, breath and pretend this is what I intended all along. Finally back on front, hands and knees. Hmm - no furniture near....hmm. All the while trying to think above the hurting bits. (eg should never ever be on my knees but no choice...) Vow never to be so silly again and somehow with super human effort get a leg up and use the window frame. Forgot the pre planning didnt. I.
In another words just do it and hope no public show of embarrassment. It is there, present but some things have to be got on with.
Occasionally it and I have a spat. It is very therapeutic to say a naughty word or two and even shout-scream. Luckily unlikely to be heard by neighbours... On very rare occasion have been know to cry.
Just like any bad relationship. I suppose the one I dont do that would do if RA really were a person (much more demonic than that isnt it?)... I dont constantly offload on to any friends. I find DS or other groups enough to keep company with fellow sufferers. We all have a rough idea of our communal woes.
But do try to find quiet spaces, go back to bed on bad pain or mental pain days with comfort such as - I was going to say 'hottie'- (New Zealanders often put an ie/y ending on things) so could be delightfully misinterpreted.... but something warm.
Take drugs...
That everyday chronic pain is just there but does vary for me. But I often try ideas others have, follow links and try to see what helps. I am currently looking into therapeutic LED light machines. May come to nothing. But is giving me a sense of purpose looking forward as the political buzz phrase goes.
So as with the original analogy, I have to accept it for now, engage strategies to feel empowered and look forward to a better situation....Keep my self respect and "never, ever, give up".
Sally, you brought up two things near and dear to my heart: Loss and Recovery.
On loss: I always considered my hubby and myself to be strong survivors because we've lived through so much loss. Six months after we were married, we lost almost everything we owned in an apartment fire (didn't know about renter's insurance in our naive youth). We lost 3 babies (one at a month past term) to a genetic disease we both carry recessive that becomes dominant when we come together. We lost 2 businesses (one during the first big recession during the Carter years, the other we were able to sell back to break even). Our oldest daughter has Tourette Syndrome (boys are 4x more likely to have it than girls). But we more than just survived all this. We thrived. I also worked with families who had end-stage diseases and helped them through the 5 stages of grief. Yet it wasn't until I found this group that I realized I needed to do this with myself (work the 5 steps of grief) regarding the loss of life-as-I-knew-it - and come to Acceptance.
On Recovery: My husband is a recovering alcoholic. He goes to AA meetings and, begrudgingly, 6 months after he started going, I realized maybe I should try Al-Anon because I was still on high-alert (a very uncomfortable place to be) and my attitude was certainly not as peaceful as his was. The first three steps in Recovery are designed to bring us to Acceptance. I struggled, but when I finally achieved Acceptance, it was that same 1000 lb. weight lifted from my soul that I referred to in my first post. Thankfully, it only took me a few months into RA to realize I needed to recover and come to Acceptance of this horrendous disease. I think that, because I always considered myself to be a Survivor, that's probably why I was in denial so long.
So, thanks, Sally, for bringing up those two points, and thanks, Alto, for starting this thread - and thank you, everyone, for sharing your deepest feelings and your experience with pain. It has enriched my life!
I don't doubt that all of us would rather have learned these lessons in a less painful way, but you take what you get and learn to live with it.
Some days that is easier said than done, but EVERYONE here does it............even with the pain we keep on living and loving and enjoying life, even if some times it's in smaller ways.
I went out and bought some Krill oil today, just to see if it might help with my pain. I read a few reviews by people who said it helped them. I know it probably won't, but I just don't know what else to do. I have to be really careful about taking ibuprofen, because I've had kidney issues that I think may have been caused by taking large doses of that for years.
I'm just so glad you are all here to share this with. I just can't say anything at work or on facebook because I don't want to raise any red flags about my health. Aside from constant, chronic pain that seems to be getting worse every day now, I also have had to fight back depression my entire life. So, sometimes, I just feel like a big ball of pain - physical and emotional. Reading all that Lynne has been through, though, really puts things into perspective. I'm glad she has a loving husband to face these challenges with. Sending love and hugs to all of you.
But now I know. I have always had lower back pain (due to scoliosis) but I was used to it. A little over three years ago when this pain hit my hands, I found it worrisome. As it spread to ankles, feet, wrists and shoulders it has become more painful and bothersome as it has caused changes to my lifestyle. I try not to fight it, but stay ahead of it. If I am going to be on my feet a lot, or doing much physical work, I will stretch more and take an extra Tramadol or Aleve or Ibuprofin. When it gets awful I start taking Prednisone for a couple weeks. I find that fighting it sometimes causes it to get worse. Maybe because I'm thinking of it too much.
And Fran, I live in Upper Michigan and this winter has been killing me! When it's warmer I do feel better. Not pain free, but a lot better than in this 10-30 below crap we have been getting this year. I know I shouldn't complain, but it needs to warm up! I would love to move somewhere warm, but my hubby does not want to (even though he's got joint issues too). This relationship we have with pain is a difficult one. I think if we make peace with it, maybe it can be tamed somewhat. Maybe.
A comment on the weather question: I've lived in New York, Ohio, Texas and Mexico since RA, and warmer and drier is definitely better. My mom, who also has RA, swells up and gets fevers when it gets hot and does better in the cold. I guess just another example of how diverse the effects of this disease are...
Yes, Pain is a permanent part of life with RA. We all have to learn to avoid behaviors that make it worse. I sometimes get really frustrated when others always have a pain that is worse than mine -- I just state my case and shut up.
When asked how I feel and it's very bad. I sometimes reply "Don't ask, I might actually tell you" or use my mom's answer "Don't ask me and I'll tell you no lies. I've dealt with this for 30+ years and there is never a clear answer. I do not have much crippling so I don't look sick.
I also have a good friend having chemo right now. She doesn't complain much to me because she knows my situation. I still try to give her as much support as I can. I sent her a Jim Shore frog for Friends Rely on God. She called as soon as she found it by her mailbox -- guessing right away who'd sent it.
The weather does bother me but to what degree I'm still figuring that out. The cold damp rain & hot humidity can cause more aching. I'm sure of that. This summer should tell the story. I'm a northerner, yes darn Yankee with a southern roots.
I struggle with acceptance. As I'm also very hyper & active with ADHD so it's like a cruel joke when I was a person who never sat down & loved to accomplish various tasks in one day.
Although my body is used to some degree of pain. As I had chronic pain before my DX of RA & SS.
When my doctor said you'll have to get used to living in pain as it's never going away I was stunned. Laid in bed & cried.
My husband would not believe or accept & sat there & heard my doctor.
Then the RA DX came & it was a double whammy. Cried again all over mourning my old life.
I guess I work on acceptance daily & try hard to enjoy the good days.
I refuse to give up my joking side as I love to laugh & hear others laugh.
Of course there are those days I get so fed up & frustrated I either cry or cuss. I'm not a cusser at all. So it's pretty nasty if those words exit my mouth.
Also developed a couple more personalities. Perhaps my way of coping.
This group gives me something no one else can. Mostly appreciation for what I have & strength to overcome what I no longer have.
The only fear is the flares from my neck & neuropathy that no human could deal with. Also the fear of it causing lose in my families lives.
Other then that I'm getting better at dealing.
It's hard for others to comprehend that there are actually people who live in pain every single day.
People tend to believe what they want to believe.
Sammy