Acceptance of chronic pain- think it helps?

Amanda - posted on 01/30/2009 ( 15 moms have responded )

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Hey Guys,



How many of you would say you accept your pain as for life? For almost 5 years I have fought the pain, hid it from myself and friends.I don't like to label myself as having RA but who am I kidding. Everything I do causes pain! I go on this constant cycle of pushing myself to do more then paying for it. I think I need to just fully grieve not being able to be the mom/wife I thought I could be and then maybe I can have more hope..... I don't know. I thought it was good to fight but the wall of reality hurts to much when I slam up against it every week or so. What has been your experience with accepting your condition.

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Jennifer - posted on 03/25/2009

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I was diagnosed with FM at 16. I had suffered with symptoms for over 2 years before that (but they were minor). When I turned 17 I had a flare up that lasted three months (you guys know which kind I mean, can't move off the couch or wash my own hair). Explaining that to High School teachers was terrible because they didn't believe me. Going to a center that treated other people with FM was what finally made me accept my condition and realize I wasn't crazy.

I now have a(n almost) 2 year old.. and it's hard everyday. But I know that I will fight this battle for the rest of my life, and I'm prepared to fight the pain and fatigue, to insure my daughter's happiness and well being. She gave me something to get up for every morning, even if it's to get up and lay back down when she does.

I think accepting it plays a huge role, you can't move on and "roll with the punches" until you've accepted it and dealt with those major emotions.

best of luck to you :)

Christine - posted on 03/25/2009

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my pain came on gradually, but has been consistent for a little over 9 years now---and has gotten progressively worse.  i started with headaches and taking  a darvocet and an excedrine in the morning was good for the whole day for me.  as the aches in my body started setting in, i was taking the darvocet for that---so the headaches didn't get a chance to set in.  after having a hysterectomy 3 1/2 years ago, i went into a really bad flare and have not been able to get off of norco and soma ever since.  i have had a bad winter and am feeling like i am reaching the point where the amount of medication i am allowed for the month is not quite enough any more.  i still have this hope, though, that i can do something to make this go away.  i guess that means i really haven't accepted it yet---even after this many years.



i really need to be greatful for the days that i feel relatively normal and can do quite a bit---and be greatful that i have a doctor that doesn't freak out about giving narcotics for chronic pain!

Tina - posted on 03/03/2009

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I think you just have to accept and pray about it.  God will help you get through anything if you just ask.  I don't have a problem telling people that I have RA.  It is a part of me and it always will be.  I have always loved to volunteer and still do, I just get a cortisone shot to make it through a big day or week of volunteering.   Most people are really understanding of what you can and can't do if they know about your disease, at least in my world, but I am mostly around very caring Christian people.  Our diseases are nothing to be ashamed of, we did not ask for it.  The big thing is that I always praise God for everything I have.  I think the RA just makes me a stronger, more understanding person than others that have never experienced a chronic disease.  Just remember there is always someone worse off than you are. 

Monica - posted on 03/01/2009

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I feel the same way. I have FM and I hate it. I was taking Lyrica for it and I felt it was'nt working. Then I was hospitalized doing bunch of tests thinking it was something  else. Thank God everything was normal. Honestly, I am a recovering bulimic and when I sawthe side effects from this drug. I said hell no. I was scared. I started taking the Lyrica and I'm feeling a little comfortable. Being a mommy to my son who has Autism and a wife. Its hard to cope and deal. But today I realized that I have FM and I'm going to try.

Dr. Peggy - posted on 02/28/2009

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Michelle, you said so much that I think is right on. I was in a fibro therapy group of 8 women from 24 to 52 and ALL of us said over and over and over, "I want my life back!" As you can guess, that is what the therapist work on with all of us. We weren't going to get our old lives back (and yes, every one of us was a type A over achiever). We were going to have to do what we could to get a good life back. You reminded me of that whole process, Michelle. Thank you.



Amanda: I pick and chose who I tell what is going on with me. I am one of those you see and would not have any idea I have 2 chronic illnesses that both include great pain unless I am constantly vigilant.  I want my friends to know so that if something comes up, it is not out of the blue for them. But most really don’t understand, and I don’t talk about it much and try not to complain to them. Your friends who made fun of your RA walk – well, they may have been laughing because they didn’t know what was going on and thought maybe you were doing something weird and vain like wearing shoes that were cute, but hurt, or something like that. I’d laugh at a friend, too, if she was doing something like that.



I think you need to ask yourself if, now that your friends know what is going on with you, are they accepting and kind? If they know and they aren’t, then they are not friends. They are just people you know. Friends – real friends – support us and try to understand.



And thanks for posting this question. It has helped me. PBB



Amanda - posted on 02/24/2009

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Thanks you guys for your responses. Michelle, thanks for writing evern thou it caused you pain! I really appriciate what you guys had to say!



I'm going to start methotrexate (spelling???) this week..... i have put it off for so long but I need to try. Big reason why I never went on it before was b/c i wanted another kid but that isn't going to happen unless the ra gets better. Still trying to accept it. I do have a couple of friends that I have been meeting with that are hounding me to really deal with it and let people in too.



I remember when I first got ra and could barely walk showing up at the coffee shop where my friends hung out and one of them was copying my walk and in my memory they where laughing. I'm not sure if they really where laughing, i felt like they where but I know they do care about me. That experince has played a big part of me not really letting people other then my hubby and parents in on how bad things are in re: to pain. I'm learning to ask for help and trying to not make excuses for a house that could be a whole lot cleaner!

Michelle - posted on 02/23/2009

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First off Amanda I'm sorry your part of this group. It would be the best thing if you could be that mom and that wife you are use to being.
That said I can empathize with your condition and my belief is that everyone in this group/community goes through the same thing. If you hate reading (like I do) the summery of what's going to be stated is: redefining who you are, radical acceptance, and pacing your life.
The part of fighting that you’re talking about is probably trying to be the same person you were before the pain got bad. Every person that has BAD pain knows that it didn't all of a sudden hit you. It came creeping up getting worse and worse till you couldn't handle it or your body started to become disfigured too or a combination. I personally have been dealing with severe pain for over 10 years (diagnosed when I was 17) and the medical "practice" still doesn't know what's causing all of my pain. The concept of redefining who I am as a person didn't even hit me until 4years ago when I stopped self medicating myself with alcohol and started facing my future. I was trying to be the same person I thought I should be, and I still have problems doing it, but there is no way being the same person is going to work. Redefining who you are and what YOU can do is the only way you can stop hurting yourself. Figuring out what the long term goals are: a week, a month, a year. Then figure out your short term goals that will help you fulfill the long term goals. If someone helps you keep in check with your goals makes you more accountable to them. Of course having small rewards going shopping at Target, getting to rest in or getting a bite to eat at Applebee’s will help out too. The most important thing for me is to have a core group to be able to complain and to cheer about your pain. Have the group know that you are working on goals for your pain.
Personally a week seems like an eternity and that's why I put it on my long term goals. If a person has never had a lot of pain, let alone chronic pain, they won't be able to understand why a week is so long. For us though we know that getting to the next day is a hard and long journey for us. Doing a household chore wipes me out for the rest of the day. The way that I get through that pain is being able to read my son a good night story. It’s simple but it’s huge for me since it’s hard for me to hold the book up (mind you I’ve been crying caused by pain typing this) but when I am unable my 3 year old son will pick it up and hold it. I started at the beginning with him letting him know that mommy can’t do the same things as other mommies or daddies or grandparents (thank you mom and dad for helping me and Jacob out). That is the time when I really sat down and decided to have radical acceptance of my pain. Of my depression that was brought on by my pain and trying to be somebody I’d never would be. I had to except that I will not ever swim competitively again since I had 7 shoulder surgeries. I will never be able to pick my son up again without having to medicate and end up on the couch the rest of the day. On the other hand I can be the best. I will be the best mom for him by reading to him, giving him different activities to stimulate his brain and muscles, and give him love. My faith in God saying “my God is my rock, in whom I take refuge….” 2 Samuel 22:3 then practicing what I believe in.
From making amends with whom you were, whom you are now, and who you will become will help with redefining yourself. Setting up goals with rewards may help you stick to them. Once you start working on that then it’s a bit easier to do radical acceptance. Having the help of goals for your day and your week will help out then you can start seeing where you need to pull back and where you can let loose and party. I apologies for getting off on a tangent but this helped me also. My prayers will include you tonight (which is really morning for me now).

Cynthia - posted on 02/19/2009

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i have come to the conclusion that no matter if i pretend that it isent there or not that It isent going to make a difference. The pain will be there and pretending that it isent just makes it harder on you mentally then just excepting it. I "pretended " it wasnt there for 2 years and actually hurt myself worse then just saying "ok you arent going to be able to do it" I cant run with my kids or do anything like that,I have come to the realization that i cant and probably will never beable to. It is hard to do but my husabnd and kids do understand..

Dr. Peggy - posted on 02/17/2009

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Push = Crash. Yeah, that is one of my hardest things. I feel better so I want to do a lot.. . and then the next day I just want to "be lazy" ( hate that term) or if I keep on pushing, I go into a flare.



what I learned is to be aware of Push = Crash in my life. So, if one day I go to work and then go grocery shopping, I KNOW that that night will be tough and I will need to plan on doing the bare minium the next day.  If we are traveling on one day, the first day at our destination, I will not be participating in family activities, but will take time to really relax. (That worked really great when the family went hiking and I spent the day in or beside the hot springs.) My family accepts this and doesn't fuss at me, now. Push = Crash. . . always a reality of my life now.  PBB

Andrea - posted on 02/16/2009

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There is a saying that what you resist persists.  Part of what has helped me become at peace with what my body has was lots of spiritual/philosophical/self help reading.  It took three years just to get to a point where I could read but once I could it helped a lot.  I choose to give my energy to positive things so if I have to lie down for hours to rest I make it happy and positive for myself whether its a book, a movie, a cuddle with my kids or just day dreaming about what I will do when I feel better.  Because I always do eventually.



As chronic pain sufferers I think there are two things that are most important:  BALANCE & GRATITUDE 



Feeling gratitude for the better days and for the joy of the moment you are in distract your mind from the pain in your body.  There is joy to be found in any moment if you look hard enough. 



Balance has been hard for me to find but the more I stick to it the more time I spend functioning overall.  There are times when I am raring to go mentally and if I pushed through the pain or fatigue I could keep going for awhile but eventually I will crash.  When I ignore the need to rest I only wind up condemning myself to more time in bed.  I may get more done in that hour that I want to keep doing but I may be laid up for two days because of my resistance.  I rest before I'm crippled up or in so much pain I'm crying. 



Acceptance is well, hard to accept, but I suppose I have accepted that there a things I need to do to live the best I can and until they come out with better drugs/supplements and treatments that change things, I am what I am.



Don't beat yourself up for what you can't do, celebrate what you can.



Pain Free Today - Andrea  (by pain free of course I mean aching all over but not feeling like I need pain meds or to lie down, lol)

Angela - posted on 02/15/2009

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I have spinal problems (4 spinal fusions) on top of spondyloarthritis as well as osteoarthritis and last year I finally had to accept the fact that I'm handicapped. It was difficult; however, once I accepted it, I was able to decide in what way I wanted to treat the pain. I told my rheumatologist that I don't want to be on the heavy duty pain meds that made me a zombie (oxycotin, lortab, etc.); but, would prefer to be on something that just takes the edge off. What I've found is that I do much better off the heavy duty pain meds.



As for the cycle of overdoing... I still fall into that; however, not as badly as before I accepted my disability. My daughter is 13 now and old enough to take on more responsibility, which she has done admirably. And fortunately, my hubby works from home which is a tremendous help. But, I do mourn the things I will never be able to do with my daughter. I hate that we can't dance together, for instance. We both love dance and it would mean the world to be able to dance the way we used to. But, recently a friend lost her teen daughter suddenly to an anneurism and I was reminded how truly lucky I am. When the pain seems like it is too much, I thank God that my daughter isn't the one suffering.

Dr. Peggy - posted on 02/15/2009

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I HATE having a chronic condition. I find that the hardest thing to accept - that this all is going be with me for the rest of my life. It is CHRONIC. Ugh!! Always taking meds and being very regular about it...making sure I do the 'right' things each day. Watching how I do things like bend over. Stucturing my schedule, my family life, my job so I can keep myself OK. I hate it all.



I found that once I get through the issues of this being a chronic condition - and I have to revisit it frequently - I do better in my day to day life. I actually have a day to day life - but only if I never stop dealing with the condition. PBB

Jacqueline - posted on 02/01/2009

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I guess, I just started being honest with myself about it.  Is it easy?  Absolutely not!!  However, it's a lifelong thing and it's so important that you surround yourself with people that understand that and choose to support and help you along the way.  At times I don't accept it, but most of the time, I do.  Was it easy filing for FMLA with my employer at only 30 years of age?  No!  But did I have to do it to secure my job?  Without a doubt.  It is somewhat of a grieving processing, but don't let that grief overcome you.  There is no closure to this process.  It will continue.  I really think you just have to reach a level of "acceptance" and try whole-heartedly to remain there.  You won't.  You'll have days and times when you're angry and sad and continue to hate that you have this debilitating disease.  However, if most of the time you're at peace with who you are, the bad, grumpy, hateful times are easier to rebound from. 

Amélie - posted on 02/01/2009

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Well, my Dr. and team  are not sure between Lupus or RA yet but just like you I am trying to convince myself that it is not true,  that it's only in my head but even with all the meds I take I am still in pain, it is very hard to accept this, I am 32, with a 9-y-old and a 6-y-old .and every weekend I try to follow my little family to dance lessons, hockey game, playing outside ect... and I find myself exhausted, for the whole week , and the wheels keeps turning that way.



I tell myself it could be worst, it could have been cancer,or something that makes life much shorter, I tell myself, that even if I get all crooked, I will still be able to see my kids get married and my grandchildren growing.......The thing that worries me the most is HOW FAST CAN THIS THING GROW.......???

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