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    Old 04-27-2008, 01:20 AM   #1
    cmpgirl
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    Chronic Pain and Acceptance

    Hey all: I was thinking, lately, about all of the people here on the boards getting slammed with new health issues, uncaring docs, friends and family who don't understand, etc.

    There are some who have lived with chronic pain for many years, and some who are just beginning this crazy ride. I think that acceptance plays a huge part in managing and living day to day, with pain.

    I know in my case, I can say I have accepted what has happened to me, most of the time. But it is hard to hold on to that when new illness pops up or the med regimine isn't working anymore, or there is added outside stress.

    Some of us were discussing the concept of seeing CP as a real "loss", almost like a death of one's former self, and I thought it might be worth exploring and discussing further. I really believe that when someone becomes chronic, there has to be a process. And to me, the first step in this process is accepting that we are no longer the same person we used to be. And we really never will be again. I think that is something that we all struggle with.

    I am not saying that the process has to be morbid or depressing. It's more about learning to love and embrace this "new person" and this new way of living.

    Maybe it's just me rambling about in my own head, but if anyone would like to share, I'd be greatful for the lesson. Fondly, cmpgirl

     
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    Old 04-27-2008, 09:17 AM   #2
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    Re: Chronic Pain and Acceptance

    Great thread, Cmp~!

    I couldnt agree more that it is a process, almost like the death of who you were before CP. I think having to accept where life takes you is something everyone, unless they are very very lucky, has to accept at some point.

    Life is messy, it's just not something that can be mapped out, and it seems to me that more change comes the harder you fight to hang on to some kind of imagined status quo. Deaths, loss of jobs, illnesses, divorce, even once in a while something good, lol, will all conspire against the plans of even the most determined people.

    For me, I feel its important to try and embrace change, to relinquish control, which is after all only an illusion anyway, and enjoy the ride.

    We are so often in our culture goal driven, in everything we do, and that is great, but it seems to me to be a mistake to always be waiting for the payoff and forget that its the journey thats the important part.

    It's hard to find anything about being in constant pain to be thankful for, but there are some things if you look. I am grateful for the people it has brought into my life, not the least of which is all of you. I am thankful that I know who my real friends are and have a built in defence against shallow selfish people, they have no reason to want to hang around me lol.

    I am thankful that my sons have grown into more compassionate, self sufficient young men that they ever could have been if they had not been raised by a mom in pain.

    I see people on this board everyday who remind me that I dont have it so bad, I am constantly humbled by the torture some of our members have been through, yet they not only keep trying, they take the time to share and try to help the rest of us.

    Also, there is reason to hope, pain management has gotten so much better in the 15 years I have been in it, just night and day, really. And I think things will continue to improve for us as more and more people are educated about chronic pain and medications are developed that give us a better quality of life than we may think possible now.

    Thanks again for a great thread, I look forward to reading everyones thoughts on this.

    Hugs, Fabby

     
    Old 04-27-2008, 09:30 AM   #3
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    Re: Chronic Pain and Acceptance

    I know for sure that I 'm not even close to accepting what's happened to me. One of the reasons is that I keep getting pounded with new troubles around every corner. I haven't had time to accept even the earliest limitations.

    Shoot, first it was my knees, which go back to my teens and earlier. Then, during the 90's and onward it's been one thing after another. I had awful gall bladder attacks, with ultimate removal. Then daily chronic migraines. Then more knee surgeries. The last one involved an nasty staff infection with gangrene invasion. Then, since 2000 a small bowel obstruction that nearly killed me. Then celiac disease that almost took me out. Then the bout with the defective fentanyl patches, which almost ended things for me. Then heart failure which put me at great risk. Now a brain tumor. Who has time to accept one's limitations?

    I think that maybe I have one case of gigantic denial. I live, and sleep, with one eye constantly open waiting for the next attack.

    Sorry, this sounds like complaining. I guess it's more like venting. I'll make more sense out of later - now I'm off to church.

    steve

     
    Old 04-27-2008, 11:39 AM   #4
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    Re: Chronic Pain and Acceptance

    For me I mourn my "life lost" I dont let others see that though.
    I miss the happy go luckey me, the one that would walk everywhere, hike, swim,,,,,,,,,,,, teaching swimming lessons.......... spend all day in town shopping and still give out when the shops would close at 6. The person that would come home on a friday and say lets head off somewhere for the weekend...........

    To me I am far from accepting my pain. I feel if I accept the level of pain I am in that I will just accept my life and slowly and slowly accept that I am able to do less and less. While now I am on the frame of mind that my life has to get better, and I will not accept the level of pain I am in, and that is why I am knocking on the doors that I feel will help me. I have to be able to do more, and will not accept that come 12 noon I have to lye down, come 4 O'clock I need to lye down, come 7 O'clock I need to lye down........ I can't continue with this level. Fine if the time up was quality time, but it isnt as I can't walk very far etc............ so I am still not functioning properly either.

    So for me I am far from accepting it........... otherwise I feel I might aswell just curl up and give up. Lets say I am accepting my limitations for the moment and I know my limitations........... but working on making them better please God.

    Round1 Love the thread cmpgirl.

     
    Old 04-27-2008, 01:43 PM   #5
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    Re: Chronic Pain and Acceptance

    When I went to the Cleveland Clinic they acutally has a 12 step process for Chronic Pain and it was very similar to the other 12 step programs. Guess what the first step is:

    1. I admit that I am comletely POWERLESS over the pain and my life has become unmanageable.
    2. come to believe in a power greater than myself.
    3. ask this higher power to help me in my struggle with pain

    I know there are people that don't believe in a "higher power" but it can be anything. It can even be this group here, which is a "power" outside of yourself that you can ask for help and guidance from. We have to realize that we are "POWERLESS" over the pain. This does not mean that you can not do anything about it. However, the pain is going to be there and you have realize that you are powerless over the fact that it is there and sometimes just how intense it is going to be, how much is going to be taken care of by the meds, how the pain is going to increase with the weather changes, etc. Once you do realize just how powerless you are, and you "accept" this powerlessness then you can move on. This is SO MUCH easier said than done and it's something you have to do on a DAILY process.

    brian

     
    Old 04-27-2008, 01:51 PM   #6
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    Re: Chronic Pain and Acceptance

    Great responses, please let me say that I feel strongly that acceptance does NOT equal giving up, Its a GOOD thing to be angry and frusterated, but compromise is the key, I live in Oregon, I grew up hiking, fishing, camping, and white water rafting and canoeing. I miss all of that, But instead of selling off all my stuff, I go to the lake and rent a canoe, dh can paddle and I dont have to wrestle it on and off my car. Instead of camping we just go fishing for a day, actually there is a gorgeous stocked trout pond and miles of hiking trails right across the street from me.

    I have given up so much, but I refuse to let the pain take it all and so should you all. I think healthy anger at being shafted by life is a good thing as long as you dont let it define you. I also had the one thing after another issue, I was so mad, as soon as something was resolved, I was right back in trouble again, I started with horrible TMJ problems that required surgery, then migraines, and polycystic ovarys which led to 4 surgerys and bleeding for a year, then a hysterectomy and with in 6 months, a ruptured disc in my neck.

    On top of that, losing my business which was my life long dream and was actually showing a profit when I had to sell it fast because I could not work.

    But I still think there is a plan for me that I cannot see, I may never be shown, but I am okay with that because my faith is absolute. My job is not to question it but to endure it and share with others and do my best to help where I am needed.

    I think of children born in poverty, in India or somewhere they have no opportunity of improving their situation, mothers who have to watch their babies die of starvation or aids in africa, And I thank God that I at least was born into a western modern society where I am offered medical care, even if at times it is frusterating, I am offered relief and the freedom to keep looking if I am unhappy with my situation.

    I am not a pollyanna, I had a very rough childhood, These are just things that have come to me lately that I feel were hard earned, and I wanted to share them with you all. The thing to remember is that you cannot have a wrong feeling, if you feel it, its okay, we're all human and trying to get through it without losing our minds, lol.

    ~Fabby

     
    Old 04-27-2008, 02:01 PM   #7
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    Re: Chronic Pain and Acceptance

    Quote:
    Originally Posted by Fabrashamx View Post
    The thing to remember is that you cannot have a wrong feeling, if you feel it, its okay, we're all human and trying to get through it without losing our minds, lol. ~Fabby
    What about if our mind is already lost

    brian

     
    Old 04-27-2008, 03:06 PM   #8
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    Re: Chronic Pain and Acceptance

    lol

    Last edited by Fabrashamx; 04-27-2008 at 03:07 PM.

     
    Old 04-27-2008, 10:01 PM   #9
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    Re: Chronic Pain and Acceptance

    I really believe that the process of acceptance is one that is on-going. I have been living with chronic pain for about 8 years now. It was unbearable in the beginning. I had no idea what was wrong with me, but I knew something was wrong. I knew that I had pain. Every day. All day. And at one point, I thought I would never know why. I thought about the worst case scenarios. What if it's fatal? What if they find it too late? What if my husband leaves me? What if I can never work again? What if no one ever believes me? So many what if's.

    I can't type out my entire life story, but if I had to do the Reader's Digest Condensed Version.....Really good and happy childhood, middle class, older parents, catholic school, college, career, courtship, commitment, daughter # 1, marriage (I know, a little out of order for a nice Catholic girl),1st illness (polysystic ovaries), infertility, father's lung cancer, loss of father, notice mother's Alzheimer's, sell house, move in with mother, surprise! - daughter # 2, still mother's Alzheimer's, back injury, too busy with life to get treatment for injuries, daughter #1 about to graduate from HS, daughter #2 fatal reaction to routine medication, loss of daughter #2, depression, pain, had to place mother in Nursing Home, loss of mother, searching for answers, anger, more searching for answers, more pain, more depression, finding amazing man that is still my PM, rediscovering faith, trying to accept, each and every day. This was all before I was 40.

    I guess, in essence, I will always be learning to accept this life that has been given to me. I have been as up as you can be, and as down as you can go. I've been given many blessings, but I've lost a lot too. I've had amazing family and friends, and I've had sorrows that no parent ever wants to have. It all changes a person. Not better, not worse. Just new. I guess God has a plan. I don't know what it is. I don't always understand it. But I know I must be here for a reason. Hopefully someday, I'll know why.

    In the mean time, it's like so many have already said. I can't make the pain disappear. I didn't ask for it. And I can only change what I can control. Today, like most days, I choose to accept. Tomorrow is another day, and another choice.

    Thank you to all who have responded. It is a very enlightening thing to see how others feel about living with pain. I think we all come here for the same reasons. We want to give support to fellow human beings and we hope we are blessed enough to receive support in return. I know I have been very blessed by all of you. cmpgirl

     
    Old 04-27-2008, 10:05 PM   #10
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    Re: Chronic Pain and Acceptance

    Juliet31,

    I've got a numb left thumb too. And like yours, the numbness is spreading. It is from an auto accident last year that I didn't mention.

    We do have much in common, more probably in how we feel than the details of what's happened. And I also fully agree that, while I have my complaints, there are others here suffering much more than me. There is much I can still do. I pay a huge price in pain, but at least I can still do many of the things I love - and I am so grateful. Also, like you, I get loads of strength and consolation from my family here on this board. I care so deeply for the precious ones here.

    I wish you the best with your coming surgery. How do you feel about it?

    steve

     
    Old 04-27-2008, 11:03 PM   #11
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    Re: Chronic Pain and Acceptance

    Awesome thread! It is a little hard for me to respond to because I was recently diagnosed with failed back syndrome and I am in the process of sorting it all out. There are days that I am angry, days that I feel sorry for myself, days that I am in full denial, days that I am scared of what tomorrow will bring, and other days that I feel I am walking thru a fog.

    Some days, I am thankful for:

    1. My family is much closer. I am unable to leave the house alot so we spend time playing family games, watching videos, listening to music, having paper snowball fights, playing practical jokes on one another, and talking.
    2. My children have seen me in pain and have learned so much about compassion toward others and putting others before themselves.
    3. My children are learning the ropes of housekeeping and cooking at a young age so they will be well prepared for college and living on their own.
    4. Thankful for my meds.
    5. Thankful for this board.
    6. Extremely grateful for a fellow spinney that I can talk to each and everyday and who gets what I am going thru.
    7. I have learned that having a house 100% in order all the time is not important
    8. I have learned that I can do things on the fly and every last detail does not have to be mapped out.

    Some days, I am angry:

    1. Not being able to do trips.
    2. Not being able to walk more than 200 ft, ride bikes, play ball, with my children.
    3. Not being able to sit at the dinner table; therefore, I find it impossible to go out to dinner with my family.
    4. With my surgeon for not fixing me.
    5. Not being able to spend quality time with my hubby because of the pain.
    6. Not being able to sleep next to my hubby because he thrashes at night in bed and my back can't handle being hit / jarred.
    7. Angry about needing to take meds on a daily basis
    8. Angry for all the friends I have lost.
    9. When I look in the mirror and see the pained look on my face, deep circles from the lack of sleep, and not every strand of hair in place.
    10. with having to admit I can't do all that I could do before to others.

    So you can see I still am in the process of sorting this out and things are still rather messy in my life. I finally have gathered up the courage and strength and scheduled that 2nd opinion about failed back syndrome with a top notch doctor on May 12th. I just pray that it will bring closure to this diagnosis so I can sort everything out and begin accepting this fate one way or another. For now, I am simply in a state of confusion.

     
    Old 04-27-2008, 11:18 PM   #12
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    Re: Chronic Pain and Acceptance

    Pepper: I just wanted to let you and everyone here know that the reason for my thread was to allow all of us to share our experiences with this journey or process. What I see, with each person's post, is that we are all going through the same things. The same confusion, the same anger, the same determination to never give up.

    You have a very insightful list of things you are thankful for and just as much, your list of reasons for your anger. I would like to add that the thrashing spouse, seems to be a very common issue. Hubby and I are saving our pennies, so that we can purchase one of the memory foam mattresses. I have a friend who has one, and she loves it. She said her husband could do cartwheels on the bed, and she wouldn't feel it. They are just so expensive!

    I applaud you for seeking a second opinion. Every person who is given a cut and dried prognosis, owes themselves the opportunity to see if there is another opinion out there. I want to wish you the best of luck with that.

    Thank you again for the reply. God Bless, cmpgirl

     
    Old 04-28-2008, 12:00 AM   #13
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    Re: Chronic Pain and Acceptance

    I have my days where I accept it and then I have days where I just can't believe it. Between the age of 25 and 42 I had 10 surgeries for various body parts. I bounced back from all but the back surgery. I considered myself lucky on that. The back surgery has changed my life forever. I had to retire at 42 years old. After working there 22 years I was finally making a good salary. I am luckier then most in that I was able to take a disability retirement. So I get some money while I sit here and wait for my Social Security to get approved. I always looked at it that way that I was lucky. Other then the pain I am basically healthy. Just living in chronic pain. It is starting to set in that this is it. As good as it get. I'm sitting here thinking that I will be in pain the rest of my life unless they invent something to help me. So, what is my plan? I'm 43. What do I do with the rest of my life? Hopefully, the pain will level off and I will be able to function. I have a 14 year old son. He understands I am in pain but he sees me do alot of the stuff I did before the back surgery. Tonight I could barely stand up on my own. Where does it go from here? My husband understands the pain. But there are days I don't think they don't really get it. He sometimes will say when he gets home from work that "you were home all day". Then he catches himself. I told him the other day that I would be working if I could. He is a good guy. Well, don't know if this answered the question. I guess I do accept it but I don't like it.

     
    Old 04-28-2008, 10:54 AM   #14
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    Re: Chronic Pain and Acceptance

    Girl,

    I love your post. I leave my life with RA which is not easy especially when you are a child, it prevented me from things healthy kids could do, due to swollen joints and a lot of constant pain.

    I had my first knee surgery at 24, than another one at 36; all total I had 8 major surgeries, 2 of them multi - level lumbar fusions. I am under PM care for years,on opiates for 3 years by now. Due to RA I got heart problems, had couple of catarizations and leave on meds for years.

    I don't remember one day in my life to leave without pain. I think if I would wake up in the morning without pain, I would think I died and went to Haven

    None of the above stopped me from leaving a normal life mentally. I lost my job due to failed fusion and a lot of nerve damages. I can't walk normally even with cane, my foot drooped, I leave like many of us here in a lot of pain all over my body and to make matter worse, I developed Arachnoidities after my first fusion. Second fusion for above levels did not help my condition.
    Due to all this, i have severe problems with bowel and bladder, this is not a fun life for sure.

    But... I still believe I am blessed because situation could be worse. I believe if my family is OK - I am OK. I can take physical pain, but I have a very hard time to deal when something goes wrong with them. My husband was treated for cancer 8 years ago, my son was diagnosed with Lymphoma when he was 13 (now he is 23 and doing well)... I didn't know at that time how can i survive this, but i never question myself when it comes to my pain and problems.

    I believe I have a very positive outlook: I hate to complain, I enjoy everyting I see around me. I love life, I love my family, I love blue sky, I love to meditate, love good people, love my friends...

    I go for a walk - flowers, trees can bring tears to my eyes, that is how much I enjoy them and the fact that I am walking and can see all this beauty! Even if I can handle 20 minutes only - I am happy! I know that there are many of people who can't even get up from bed for years, so why would I get upset if can't walk more than 20 munutes? No, instead I am doing the best I can at this moment. I try not to waist time on negative thinking, it can make people depressed, is in it?


    I also enjoy my grandkids, I love every moment i spend with them, I love family events, little get together with my friends... some days I can't do it, I can't get up from bed, but it's OK I can do it next time. Very important to see that light at the end of the tunnel, it's there, just don't give up to believe in it.

    They say: "Life gives you lemons, make lemonade". I make a lots of lemonade, so whoever want to come, please will be enough for everybody! LOL
    Another words, I don't cry when I get lemons, I make lemonade without any frastration. Life is life and it doesn't go smoothly (unfortunatelly) for anybody. I accept things in life as it comes; I have so much to leave for, so much love from friends and family...I am very blessed...

    I lost my wonderful job, it was a big chunk of our income too; I got bad report about my spinal problems, they are permanent and most likely I will have to deal with it to the end. I will never be able to drive which is devastating for independent person like me.
    I end up at the Hospital at least 2-3 times a year due to heart and/or spinal problems. I still beeing watched about my lungs problem, still a possibility of a bad diagnoses (small though)... BUT
    I have my books (I am a big reader), I have my great kids and grandkids, my wonderful family, great friends, great Drs who take good care of me and much more... Life is still very beautiful, at least I see it this way... Every bad experience makes us stronger and something we learn from it...

    All the best to all of you. Piece and love...
    Moldova

     
    Old 04-28-2008, 12:39 PM   #15
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    Re: Chronic Pain and Acceptance

    Wow, I am blown away by the strength and courage of heart you all have demonstrated. Moldova, Steve, Pepper, Brian, Cmpgirl, all posters here-- you help give me a reason to keep fighting. Acceptance, though, does come and go in waves. Like Brian said, you have to try to achieve it on a daily basis. Some days go well, others, not so good.

    After a childhood of physical and emotional abuse, a bad first marriage that brought me my precious daughter, finding my knight in shining armor, a great career that paid well, being the I-can-do-it-all mom/wife, then hit with degenerative disk disease, fibromyalgia, raging insomnia, needing a separate bedroom from DH due to his snoring and my sleep issues, trying to continue to work anyway, got worse, gained weight, developed sleep apnea, restless legs syndrome, gall bladder problems & surgery to remove that got complicated, pre-cancerous condition forcing a total hysterectomy with a very slow recovery, ongoing hormonal issues, losing my in-laws, enduring DH's cancer surgeries and his ongoing health issues, stress of job and lack of sleep forcing me to quit working, repeated job losses for DH (due to IT outsourcing), losing our house, going through bankruptcy, losing two dear friends to sudden illnesses, pinched nerve causing incredible pain, requiring steroids (oral and cervical injection), new med bringing even more weight, FM pain flaring to unbearable levels, becoming less and less able to do things physically, getting tendonitis that just won't heal, needing naps every day to cope with fatigue, facing yet another job loss for DH and coping with the reality that I will never be a size 6 again, nor will I be the healthy, active woman I once was. I will never hold a job again, and I will never be able to support myself.

    I do believe in God. I believe He has a plan for me. I get frustrated sometimes when I cannot decipher a reason for things that happen. I often wonder, "Haven't I had enough, God?" and launch a self-pity party that lasts for days. Then, I shake it off, focus on my blessings:

    1) Husband who cares about my welfare more than anything
    2) Beautiful daughter who has grown into a wonderful young woman
    3) Precious son-in-law who loves my daughter as much as I do
    4) Wonderful friends who care about me
    5) Sweet brother, sister-in-law and nephews whom I adore
    6) Free of the stress of working
    7) A roof over my head and the basic necessities of life (and more)
    8) A great internist who is willing to do whatever it takes to help me feel better
    9) This board, and all the people who offer their compassion and encouragement, even through their suffering

    CP is a part of my life and will be forever. I think I have accepted that I will never be "normal" again. I just wish I could shake off some of the guilt I still feel about being a burden and contributing to our financial problems. I also suffer from self-esteem issues due to the weight I've been carrying for quite some time and am unable to lose, despite valiant attempts. I also endure the judgment of others who do not comprehend the depth of my disability.

    I have found this board to be the only place where I can bare my soul, share my fears and weaknesses, and still be accepted...Thank you all, from the bottom of my heart, for doing that for me. I love each and every one of you.

    Praying for all CP members,
    TexMom

     
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