52 responses so far ↓

• Nath // Oct 22, 2008 at 6:27 am

  Without my chronic pain I never would have met the most wonderful person in the world, my dearest darling S.

• How to Cope with Pain // Oct 22, 2008 at 8:15 am

  Nath –
  Please be sure S reads your comment!

• Maureen // Oct 22, 2008 at 11:29 am

  What a wonderful post!! I have espoused this theory for years, and yet I find most doctors HATE it. They think there is something wrong with me mentally for making the best of a bad situation! I can’t tell you the number of times I have been questioned about this. I truly believe that we can learn something from EVERY experience we have, good or bad, if we try. And for me, it definitely helps me to feel better about living with chronic illness when I know there have been positive things that came out of it. I learned how strong I am. I am very compassionate towards others, I don’t sweat the small stuff the way I used to, I don’t judge others by appearances because I know how misleading they can be,just to name a few things.

  Most importantly, for me, my faith has become stronger. I realized that God has a purpose for me, and it may be different than I thought I would be, but it isn’t any less important!

  Thanks for putting a wonderful topic out there. I hope lots of others will respond. It will be fun to see what they feel about it.

  Maureen
  Http://Beingchronicallyillisapill.blogspot.com

• How to Cope with Pain // Oct 22, 2008 at 11:32 am

  Maureen, how did you get to the point of being able to see some positive?

• kmom // Oct 22, 2008 at 1:18 pm

  Pain has slowed me down. And that is a good thing because I can see things I wouldn’t have noticed otherwise. I sit, and my kids come to me and have my attention and open ears.
  My friends see my vulnerability as a chance to show me that they care and I am able to see it.
  They also feel more able to share with me, because I have time to listen.
  I used to be more physically active. Now I am more mentally active. But I do intentionally do as much physically as I can—I don’t want to loose what I have—but to listen to my body and stop before I will be laid up for days.
  I’ve been forced to be more gentle to myself, and more pro-active with my health. I’ve learned that’s ok.
  I’ve learned to prioritize what I do. What do I really want to do, and figure out how to do those things, not just do everything. So I am finding out what I treasure, and letting the rest go.
  I’ve also found out just how loving, caring and supportive my husband is. And continually tell him so, so he can feel appreciated too.
  I’ve learned that I am valued for being me, not for what I do.
  That’s a lot.
  It would have been nice if I could have learned this without pain. But I am slow that way!
  Would I still give pain up? Oh yes, but I’d hope I remembered this.

• How to Cope with Pain // Oct 22, 2008 at 1:24 pm

  Maureen and Kmom, thanks for your comments. For both of you, can you write how you were able to start to see the positives, instead of fighting for what you once had? That’s a big leap for those readers who aren’t seeing the positive yet. Any tips?

• JANET // Oct 22, 2008 at 2:36 pm

  I HAVE TO AGREE, YOU FIND OUT SO MUCH ABOUT YOURSELF. YOU HAVE MORE POSITIVE OUT LOOK, BECAUSE IT COULD BE WORSE, YOU LEARN TO ACCEPT THINGS THAT YOU NEVER DID BEFORE. YOU CAN STILL DO ALOT OF THINGS, JUST A DIFFEREND WAY AND NOT IN SUCH A HURRY, YOU HAVE MORE EMPATHY FOR OTHER PEOPLE. YOU LEARN TO LOVE LIFE, FOR WHAT YOU HAVE. I ALWAYS TRY TO THINK OF PEOPLE THAT ARE IN WORSE PLACES THAN ME. PAIN AS CHANGED MY LIFE, BUT IF I DON’T LET MYSELF LAUGH AND SMILE, I WOULD CRY, I REMEMBER BEING TOLD ONE TIME THAT I MADE THEIR DAY JUST BECAUSE I SMILED AT THEM, THIS MADE ME FEEL GREAT, I HELPED SOMEONE ELSE.

• Suzanne // Oct 22, 2008 at 3:10 pm

  After living with RSD for 5 years, I have really changed my view on life. The sun in the summer is warmer, the leaves in the fall are prettier, the snow in the winter is whiter, and the birds in the spring sing a sweeter song. I am NOT saying that life is BETTER than before, as I have many limitations now, but I do NOT allow them to depress me. I have found a great need in my area for people in chronic pain, and I have started a support group for those with RSD. In the last year it has grown quite a bit, and now we are taking on anyone with a chronic pain situation due to any Autoimmune disorder. It is a great challenge to manage meetings, and parties, and to try to help those who seek qualified doctors and heath care professionals, but it is a great blessing to me to be able to help others and to show them that we CAN survive this !
  There are many things to learn from illness, but most of all, I really see the problems of others much clearer now and I am grateful that I can be of help to them. Life may change, but I believe it is for a reason. Don’t forget to be thankful today for what you DO have. You can always find someone who is worse off than yourself. DO NOT ever give in to feeling sorry for yourself- but reach out to others and YOU will feel better !

  Suzanne

• Suzanne // Oct 22, 2008 at 3:11 pm

  thanks Maureen for your comments- I agree 100% with what yo uhave stated.

  Suzanne

• Nick // Oct 22, 2008 at 3:36 pm

  If it wasn’t for having RSD I would of never seen my son grow up. I never missed a day of his life. This is very rare in today’s society with both parents working around the clock and having a nanny raise their children. This was a blessing for me. He was three and a half years old when I injured myself back in January 2000. He is now 11 plus years old now and I still live with RSD. The pain is controlled by taking heavy duty pain meds.
  Secondly I started building miniature houses in order to take my mind off of the pain back around 2004. Now I have a web site with a friend which displays my buildings. We promote toy soldier manufacturers and dealers using my buildings and their products. I enjoy doing this because it takes my mind somewhere else and I totally forget any pain or the RSD which I have. Well, that’s about it. I hope this all makes sense.
  I feel a nap coming on. LOL
  Regards

  Nick

• How to Cope with Pain // Oct 22, 2008 at 4:04 pm

  Great inspiration here in these comments! Thanks.

• TOM // Oct 22, 2008 at 4:10 pm

  THE STATEMENTS I HAVE READ SO FAR I HAVE FOUND TOO BE TRUE.AFTER GOING ON 11 YEARS OF FULL BODY RSD I HAVE DONE ALOT OF SOUL SEARCHING.IREALIZE I AM NOT IN CONTROL OF MUCH.I BELIEVE THEIR IS AN ULTIMATE GOD ORDAINED DESIGN.I WAS ELECTROCUTED.THAT CHANGES THINGS WITH 15 OPERATIONS.I HAD TOO ACCEPT THE DISEASE AND THAT WAS VERY HARD.BUT A GREAT BURDEN WAS LIFTED OFF OF ME ONCE I DID THAT.I HAVE A GREAT COMPASSION FOR THE LITTLE THINGS,AND MOST OF ALL PEOPLE SUFFERING.ONE THAT REALLY GETS ME IS WHEN SUFFERING PEOPLE FOR SIMPLE REASONS CANT GET TREATMENT OR MEDICATION THAT WOULD MAKE ALL THE DIFFERENCE IN THEIR QUALITY OF LIFE.I ALSO HAVE LEARNED HOW TOO WORK THE SYSTEM AS I KNOW WHAT IT IS LIKE TOO HAVE TOO ALMOST BEG FOR TYLENOL3 FOR A TORN ROTATOR CUFF AND RSD PAIN.MY HEART GOES OUT TOO THESE PEOPLE.I ALSO HAVE LEARNED THAT NO MATTER HOW MUCH PAIN I`M IN I STILL CAN GET SOME ENJOYMENT OUT OF LIFE.I DONT LIKE WHEN THE SYSTEM HASN`T EVEN HEARD OF RSD IN AN E.R. SETTING AND DONT TREAT YOU APPROPRIATELY.I HAVE HAD THESE EXPEIRENCES ALREADY.I WILL NOT GO TOO AN E.R.UNLESS IT IS LIFE OR DEATH.AND FINALLY I DON`T LIKE WHEN THE SYSTEM TIES DR.S HANDS FROM TREATING YOU.THEY TRY AND DO HIS JOB AND HAVENT EVEN SET EYES ON YOU.BUT IN ALL THIS I REALIZED NOT TO BE ANGRY OR STRESSED IF I CAN`T CHANGE IT.I TURN IT OVER TOO GOD AND LET HIM HANDLE IT.I HAVE ALSO MET SOME VERY BEAUTIFUL PEOPLE SINCE I WAS INJURED.THEY TOO HAVE TAUGHT ME SOME THINGS.HURTIN PEOPLE ARE GENERALLY THANKFUL PEOPLE.I`D LIKE TOO TAKE A SECOND AND THANK YOU FOR THIS ORGANIZATION RSDSA.JUST TODAY I GAVE A COPY OF CLINICAL SIGNS TOO MY SKIN DR.SHE WASNT AWARE OF THE IMPACT THAT SKIN PLAYS INTO ALL OF THIS.SO SHE IN TURN PERSCRIBE SOMETHNG FOR MY BURNING SKIN .THANK YOU AND GOD BLESS,T.

• mary // Oct 22, 2008 at 4:17 pm

  Credibility. That is my blessing when I listen to others in pain (cancer whatever) Thanks to you all. I am still undiagnosed after 15 years, but have found that what you all have said to be true. Not a whiner among you.

• Barbara // Oct 22, 2008 at 4:30 pm

  I was 38 when I got an extremely severe case of full body RSD. I had already learned the lessons of stopping to smell the flowers, taking time for family, appreciating what I have been blessed with so what positives did my pain give me?..

  NONE!.It has caused problems but I have fought to keep it from changing me. It has caused problems for my family and after 21 years, we’re coping fine. We are the same people with a terrible disease.

  I need to use a power wheelchair, have lost 30 % of the volume in my lungs and wage a daily campaign to keep my body from contracting into itself… but I have become a photographer who sells her work. I ran a RSD support group from 1989 to around 1994 and continue to speak and help many who need support. For 13 years I have help run a local coffeehouse that is a very fine musical listening room. 15 shows a year with 3 acts per show, lots of music. Currently I am helping to develop an educational and performance art program on The ARTS and the DISABLED. I have s wonderful family,(married for almost 39 years and 3 grandsons)
  fantastic friends and more activities than I can do. So when I look for the positives pain has given me, I can’t find them.

  The pain has caused so many health problems that besides the times my physicians told Paul that they didn’t know if I would live through the night (due to infections, meningitis or reactions to medications) I often have had to limit my involvement. Pain hasn’t given or taken anything away from me except my health.

  Pain damages our body, mind, family, professional life, financial security and hope. These things don’t happen because we cannot find positives in the change that pain has caused. They happen because our medical insurance won’t pay or we don’t have insurance, we lose our jobs because our employers cannot or will not adjust our positions even slightly. The lack of money and battles with the insurance companies cause so much stress that many of us are estranged from our spouse even if we live in the same house. Many of us who are in pain loose our friends because we no longer can do the same things we did with these people. Many people don’t believe that the pain is real or that we who have chronic pain are only wimps. Besides the pain, many of us loose the social network that we had always counted on to see us through the best and worse times.

  The studies found that those of us who have strong support find that their pain has caused some positive change in their lives but for many of us the problems that society thrusts upon us only cause more pain. We need to remember that there are many people out there that have gotten nothing but financial, psychological and social pain heaped upon the very body that deals with real and constant physical pain. We need to remember that we have to stand strongly together to make services available to all who suffer from chronic pain so they can maintain the social and financial supports. Maybe then most people can find that they too can see positive changes from their experience with pain.
  Barbara

• Erikka // Oct 22, 2008 at 6:02 pm

  Without my RSD I wouldn’t have meet the friends that accept me for who I really am. Also I wouldn’t have realized God was calling me to work with other chronic pain patients as a nurse. I am currently a fresman in college working to get my BSN.

• How to Cope with Pain // Oct 22, 2008 at 7:26 pm

  Many of you have found positives. But Barbara points out that you don’t have to feel any of it is positive to still live fully.

• How to Cope with Pain // Oct 22, 2008 at 7:27 pm

  Erikka, a wonderful goal! How is your school accomodating to any needs because of RSD?

• Erikka // Oct 22, 2008 at 8:05 pm

  I live in a first floor dorm, I get printed notes from my Professors, get to take my test in a seperate location than the classroom so I have more time and its quieter, also during long classes (esspecially labs) I am able to take a break. The college has a hard nursing program but has been accomidating in every way. I was even scared about the lab because we had to wear pants and my right leg is hypersensitive. So I comprimise and wear caprise, the learning center directer and I talked about it and she then consulted with the dean of nursing and worked everything out.

• Dana // Oct 22, 2008 at 9:17 pm

  Dealing with chronic pain takes time… a lot of time. It is different for everyone and changes with life circumstances. I was diagnosed at 14 years old with Lupus, which I believed has prepared for the pain I live with today.
  In my late 30′s, I had a work related injury which resulted in two back surgeries, one being a global fusion. I thought the fusion was going to be the most pain I would have to experience….until I had two foot surgeries and developed RSD. That brought my chronic pain to a new level. The first several months I was literally consumed by the pain and tried many things to “get rid of it”. I had 13 Nerve Blocks, infused with a chemo drug, and tried many nerve and pain drugs. Today, I am only able to walk around in an aircast and have given up on traditional treatments… I have settled on some pain killers and a new outlook. No longer am I consumed by fear of RSD, but rather I accept the limitations and do what my body allows.
  How did I get here? A LOT OF PRAYER, which has given me new peace.
  Having to live with Lupus at a young age, I learned to cover-up how I feel… so as a seasoned adult, my new motto is “Fake It, til you Make It”. The most difficult thing is to give up activities you love!!! Years ago I was a tournament water skier and avid snow skier…. today I enjoy being able to do a modified workout in a regular gym rather than physical therapy and enjoy walks in the snow as others go skiing. New perspectives are key. I am not able to work a traditional job so I started a jewelry business which has satisfied me in so many ways. My husband enrolled me in Cake Decorating and now I love surprising friends with special cakes. I also had the joy of making my son’s wedding cake 4 months ago…. never would have done that without RSD. Let go of old ways and let God bring new opportunities.
  I learned a valuable lesson from a Physical Therapist during my back rehab… he said, “today, did you make a deposit to your healing or withdrawal”? I find the deposits add to my coping when they are done on a daily basis.

  May God Bless you with peace and healing,
  Dana

• How to Cope with Pain // Oct 22, 2008 at 10:19 pm

  Erikka, it’s so good to hear your school makes modifications as necessary, and you’re being creative with compromises.

  Dana, another example of being open to new options.

• deb // Oct 22, 2008 at 10:48 pm

  right now I am dealing with the loss of job that I loved, caused by situations of pain and and depression. I still have a job and I still get a paycheck and health benefits, but this was to be the capstone job of a 25 year career until my boss decided I couldn’t do it. Maybe I couldn’t any longer. Maybe I was just fooling myself. But is does not make the grief or rage any less. I have not found a single benefit that pain has brought to my life.

• kim // Oct 23, 2008 at 12:45 am

  I have rsd in my right dominant arm since 2000. I was on disability for five years. A spinal cord stimulator implanted for 2 years, that did not work. and removed after 2, and many medications that did not work. I went thru the state vocational rehabilition program and now have a new incredible career that is tolerating to my pain, and satisfying to my life.
  Without my rsd, I would not be where I am today. Believe me, I wish I did not hurt everyday, but i have found a way to live with it.

• Elaine // Oct 23, 2008 at 5:50 am

  After having RSD for 20 yrs, I began with a depressive state of mine. Now, I see the important things in life…..Not dwelling on the pain, (sometimes harder than other days), seeing the good in people, having more patients regarding my family. Before RSD, I needed to slow down in my life, it was totaly out of control; Wow, how this has slowed me down! Having time for friends & family. I am not as angry at this disease, as I use to be. Totaly don’t sweat the small stuff. There are bigger and better things I can use my energy on. I have my family, pets, and friends , who are all awesome! I love to get out in my yard and do some gardening. The results of gardening……..beautiful flowers! Thanks for letting me share. Have a beautiful day.

• Linda // Oct 23, 2008 at 9:30 am

  I have had rsd for almost 30 years now. First, I want to thank my family, who has stood by me during the whole process. From the day I got hurt in ICU at the hospital I was working in until and beyond today. I think the hardest for me was giving up my nursing. I had finally reached one of my goal as to be in charge of ICU unit. It was funny how 7 seconds could take your whole life away. Now being disabled for most of my life and dealing with the pain of rsd has been a drain on my body. Not only the body but the mind also. If anyone would tell you that it doesn’t put a lot of stress on your mind they are nuts. There has been many times dealing with depression and want to end the whole thing has entered this mind more than once. But then you have to think, what about the people that you would leave behind. What about them, as it changes your mind even thou the pain is so great that you can’t stand it . Yes, it is hard when you sit there and you are in so much pain, the tears hurt when they run down your face. But, when a little one come up to you and place a sweet kiss on your face, things don’t seem so bad.
  As the years have gone by you thank God that you did not take your life. You may not hurt then, but what about them, I feel that I would have been so selfish and it would not be fair to them that has stayed at your side when things were so bad. After my third year of rsd, I learned love does cover a lot of things. Now that I have had this more than 30 years, I tell people, yes you will go throw this to but think of what you would lose but most of all, what your love one would lose.
  So I tell people there is more to live and it is worth living for. Believe me this is so true, as I can’t move much now but still have some use of my hands to type and a mouth to talk, I feel that people that I educate about rsd know the up and big downs to this problem. Many people do think it is all in our heads as they can’t see the problem. We don’t look sick most of the time, but when I give them a taste of my pain they change their minds. You ask how do I do this, well I put on a pan of boiling water and then ask them to put their finger in there. Many say no way, and I say to them, do not take my pain so lightly then. Don’t think that people with rsd are faking this, I don’t know how rich this would make them, but I ask people to have a lot of compassion for people that are in pain. I tell them that this is one of the hardest thing to deal with in life. Pain is hard to treat as there are not many medications out there that works well to relieve our pain.
  I take morphine to help my pain, it does not take much of my pain away, but it is enough so I can deal with it. I think my biggest problem is that these drugs have been so abused that it is hard for people that need them to get them. I get so fustrated as to the fact is I have never gotten high off of them like people say you do. What am I missing. But for real, yes it is a very painful life. I am very thankful to my family, especally my sister, who cares for me. I thank God for giving me the power to love, who loves me. I am thankful to the doctors that work with me to find medication and treatment that could work to relieve our pain, yes I am a test person, I will try anything once to see if it will help. I am thankful to all of you who have rsd for talking about your situations and how you deal with it. Thanks to the rsd foundations out there that have areas like this one for us to help each other. Thank you for letting me tell somewhat my story about my rsd and the journey it has taken me. Just love one another and keep your head up and be as happy as you can.
  Remember that pain don’t control us, we control it. I love all of you who have rsd and keep up the great work we all do out there for each other.
  Linda
  Linda

• Paulette // Oct 23, 2008 at 9:39 am

  I’m so thankful to have found this uplifting and helpful website so early on in my diagnosis – just this past October 7th – so I am still trying to come to terms with rsd and how my life is changing on a daily basis. Since I try to be a positive individual and view the positives in life, I am trying to see the positives instead of the negatives of this situation. I am blessed to have a very dear girlfriend with (unfortunate) RA who has helped me. She told me to not look at ‘what I can no longer do’ but to focus on ‘what I can do’. Each day brings new struggles, however, I take a deep breath and keep moving forward (as long as I can keep walking since rsd has affected my right foot and is progressing up the leg – I don’t know what to expect). I have decided to set daily (ACHIEVABLE & REALISTIC) goals and to accomplish them and to keep moving forward. Just one or two. That way, I feel that I’ve made some progress when things around me may ‘seem’ to be crashing… Thanks to all for the positives you have found in your life with rsd. I hope to have emotional growth such as yours in the future. Be well.
  Paulette

• Lorraine // Oct 23, 2008 at 11:09 am

  My name is Lorraine and I have had RSD for 12 years now. It took the medical profession to diagnose me three years (after many doctors, states to travel, tests and of course it was all in my head), but finally I was diagnosed. I went through a lot of blocks, medication (to no avail) and am now and have been on some pretty heavy medication. It started in my left foot and has spread throughout my body due to an auto accident. The pain has definitely slowed me down sometimes to a complete stop, but my husband and children do support me. It took quite awhile for my kids to realize what I had. I was working, lost my job, always on the go. At the time I had the accident my youngest just turned a year and my other children were grown and out of the house. The RSD has most definitely slowed me down, but I am finally home with my child and able to be there. My other two children never saw me because I was a single parent and had two jobs trying to make ends meet. I finally have accepted it, but I will not let it take me over, I’ll keep fighting until there is a cure. My faith is stronger then ever, and I also believe there is a reason for everything. God Bless everyone and keep fighting and hoping for a cure, I’m sure there is one out there; we just have to be heard. We just have to take it hour by hour some days and others one day at a time. Don’t lose the faith or the fight. We are worth it!

• D'Ette // Oct 23, 2008 at 11:59 am

  I am 44 years old and in 1998 I received a crush injury to my right ring finger and middle finger since then i have developed RSD of my upper right extremity. I have been tormented by employer with split shifts, change of days off, and now being placed on a 4pm to 12 am shift which is very difficult for me. We are working on a disability retirement at this point. People don’t seem to understand the torture that we go through. I’ve slowed down alot but I try to do the most that I can. I have found a positive in family. I know that they are the most important thing in live. The sweet little grandchildren that make you laugh. I have two grandsons and another grandson on the way (March) they are wonderful. People need to spend more time with the family enjoy everyday. I also remind myself that there are people out there that are worst off than me. That I shouldn’t complain I should be thankful for what I have and who I am.

• Parris // Oct 23, 2008 at 12:27 pm

  WOW! How uplifting my morning has become after reading all of your very positive remarks. I too am suffering with RSD since 1999. With one unexpected fall at work, suddenly I found my self in the most pain I had ever been in without any immediate relief. Depression followed me where ever I traveled and on most days my body would not leave a lying down position.

  Then . . . after ten long years, I surrendered to grace and found a pot of gold at the end of the rainbow. It seemed that just as quickly as my shift in consciousness of pain arrived; after ten years, a lot of long hard suffering and “why me” syndrome I found peace.

  My spiritual life has become stronger and like many of you I have finally established my physical and emotional limitations on any give day. Now, I’m “proud” to be a chronic pain sufferer and thankful for all the wonderful people, professional and layman, who entered into my life. Most of all, I’m so grateful to the Almighty for his tireless devotion to what appears to be a lifetime struggle for a large percentage of chronic pain sufferers.

  Without my contact with RSD I would have missed so many beautiful things that this life has to offer. May we all be well.

  parris

• How to Cope with Pain // Oct 23, 2008 at 2:22 pm

  Thanks for the helpful and inspiring comments continuing!

• Barbara // Oct 23, 2008 at 2:50 pm

  -Living 9 years with the unremmitting agony of post lymph node dissection pain syndrome from a bungled cancer surgery plus a 2nd treatment induced disability from aforementioned operation & radiation-

  Positives are few: 1st in line at Disneyland & other vacations (with oncologist’s note,) a tiny monthly pittance from disability, & finding the best job of my life- teaching GED math & English- the 5 hour per week schedule is all I can handle, can still ride my bicycle since damage is limited to upper torso, barely bothered by my 4 herniated neck discs (with nerve impingement) ’cause that pain is trumped by the torment of the whole left upper quadrant of my body, & helping others through my involment as CT’s Info-line nerve pain, lymphedema & medical error contact person.

• cynthia // Oct 23, 2008 at 7:34 pm

  all of those who found positives are really encouraging. im not sure i truely feel that way yet.

  im still battling my mind with being in this forever (6 yrs now). i was an athlete all my life and was in phenomenal physical shape before the freak car accident (“wrong place at the wrong time”) that led to rsd. previous sprains, strains, bruises and broken bones had nothing on this – not being able to rely on being strong and pushing thru the pain was difficult understand. i still have a hard time even thinking all the work and education into a career i struggled for since age 12 is lost (i am 38) and now find myself jumping through hoops for proper medical care and SSD.

  i was used to dredging thru life alone, but life with rsd has solidified that fact. my only family anchor passed just a few months before the accident. rsd slowed my life down to almost nothing but gave me the time to reflect on my closeted life with an abusive mother (who ironically is a critical care nurse). i have since confronted her and found the courage to tell the rest of my family who only saw the plastic version…this is still a struggle, but had i continued with my “normal” life, i would have probably lived with this secret forever.

  i have always been a compassionate person (it was compassion for a friend that put me in the “wrong place at the wrong time”) but rarely did i afford myself the same until now. i now allow myself to cry which i never used to do. however i am trying my best to continue to believe things happen for a reason and something good will come of this as other successes have in previous dark times.

  i started blogging about my life which has been very therapeutic, creative ideas have been flowing in my stillness and solitude which i hope will lead to financial stability again, and i am no longer the chameleon – now becoming focused on me %100.

  having rsd has shown me who my real friends are and am hopeful i will find true happiness in the next half of my life – even with rsd. finding the positives has been a constant struggle…but thanks for the post allowing me to at least search for it.

• How to Cope with Pain // Oct 23, 2008 at 9:09 pm

  Cynthia, thanks for your thoughts. For most of us, coming to see a few positives is definitely a process. And once you’re there, it still ebbs and flows.

  Regarding your blog, I hope you consider sending in a post for our upcoming pain carnival – click the link near the bottom of this article.

• kmom // Oct 24, 2008 at 12:12 am

  How did I find positive stuff in pain?
  Some days, there has been and will still be despair. Sometimes the pain or the not being able to do something I want to do brings on despair.
  Sometimes there are moments when I know that
  I am in the midst of “good stuff” and glad to be able to be there. Sort of like instead of getting chocolate so often it is not appreciated, getting to savor one piece.
  Honestly, I don’t have a lot of hope for my physical healing or things being like they used to be. But I do have hope that I will be able to savor some moments amidst the pain. That has come over time as I realize that I have had good moments.
  Some of finding postives is searching for them. (and look when not in the throes of despair) When you find a positive, no matter how small, hold on to it. Remember it. Read the above submissions again.
  What little goals can you meet in a day? Revise them on rough days into something you have a chance to meet. On good days, they might be a little bigger, but pace yourself so you don’t send yourself into a bad day. Unless the good is soo good, that it is worth it!
  Embrace yourself as you are now. You are still loveable. You are still valuable.
  For me that means I probably take better care of myself now than I used to.
  There is something to the “to look good is to feel good, and you look marvelous!” that the Billy Crystal character on Saturday Night Live from years ago used to say.
  I do what I can to look my best, and don’t focus on the ways my illness shows.
  If I can laugh at my predicament, I do. And I ask for help and support.
  But, for those who just aren’t finding anything positive right now, that isn’t to say there is anything wrong with you! It is just being honest
  and that is a good thing.

• Bob R // Oct 24, 2008 at 11:32 am

  Proper pain management is all about proper mental health. If you’re not coping with your life in your mind, the pain will always be your companion. But,,, if you get your life in as decent of order as any ill or disabled person can, then pain can be managed. Of course for those who scream bloody mary all the time, doctors rarely hear this type of patient at all. Instead just tell the truth and let your health condition do the rest of the validating. It might take a cocktail of meds before your in a halfway decent state of pain management, but guess what – pain can be your friend or enemy. Now you can decide. It’s part of who we are, so why spend your life hating it all the time?

• Dawn // Oct 24, 2008 at 1:17 pm

  I have been dealing with RSD for 17 years, caused by Sarin Gas Exposure during active duty. Of course being in the military, I was extremely active, and I believe the first year was the hardest to get through. Not knowing what is going on, other than you just can’t do thing you used to, in addition to unexplained pain is difficult, at best. Not to mention constant medical appointments and procedures. Once I had a firm diagnoses and some type of prognosis, things were easier for me to handle.
  Now, I do see the positives as I deal with the negative aspects.
  First of all, I could have come home in a body bag. Instead, I met my husband while overseas, and now have 3 children (one step) and 2 grandchilren.
  Since I am unable to work a regular job, and am 100% disabled, I am able to be home for my family. Before I stopped working, I went for days at a time that I did not see my then 6 mo daughter awake, my career field actually isolated me from my family. Now, I am able to spend time with my children, actually know them as people, understand what they like and why. They know me as a person, and they understand disabilities of all types better.
  I am able to volunteer time at the shools. I work with a wonderful group of kids that are highly intellegent, and keep me mentally on my toes, as I never know what they’re going to do or say. They work hard, but we have fun, are all challenged to think of new ways of doing things, and most importantly, we laugh a lot. I am tired , and must rest after these sessions, but would not give them up for the world.
  I have found I have skills that are in demand and have established a part time custom clothing business. I didn’t even realize just how creative I was, but I DO know how to sew well, and after time, have found I am able to create anything I or my clients can envision. Since I am selective, I can make my own hours and chose clients that have sheduleing flexibility. I do have days where either physically or mentally I am unable to do any of the work. But the end results when I can more than make up for the bad days.
  My creativity has even extended to writing- I now have several books in process and a publisher/agent that is confident in me.
  I was told I’d be in a wheel chair permanantly about 5 years after my diagnosis. The good news is, I still only use a walker. I will not let this beat me! I keep a positive attitude, excersice as best I can (which took quite a while to figure out), and keep myself active both pysically and mentally.
  Having a disablity like this is no fun, and I would not wish it on anyone. But I find every negative has a positive. When I’m very down, my family steps in and we become closer. I’m less social, but my network is sooo much stronger. I can understand why some people can not see positives, but I really belive it takes time and personal adjustment to really do that.
  Live life to your fullest potential, whatever that is for YOU, and you will find the positives in your life.

• How to Cope with Pain // Oct 24, 2008 at 6:02 pm

  Dawn, thanks for another good story.

• Lisa // Oct 25, 2008 at 12:55 am

  If I hear that word opportunity or reflect I think I will scream. Someone tell me when you wake up in the middle of the night screaming in pain and your Husband feels so helpless. Your limps are on fire but you pick up your grandchildren anyway. You knees when you stand up can be heard across the room because the musles surrounding the knee is so weak the knee itself has slid slightly out of the socket. You wonder when you hand becomes a claw and you can’t walk anymore will your husband still love you. There is no goodness in RSD NONE! It is Hell and there is no cure yet we spend our very last dime on treatments that does not work or if they do it is short lived. That is the truth.

• judy // Oct 25, 2008 at 3:47 pm

  I was sitting in my recliner as i always do looking at the three walls i always do..when i checked my email Jim Broach from the rsd foundation sent me this link..As im reading through it I realize how right you are all about trying to see the best of our situations. I had a job i loved animal control officer my obsession was animals rescuing them, placing them in good homes.i worked around the clock and felt like the luckiest person on earth. I was walking up the driveway where i work one day and slipped on some black ice and broke my leg.. I had two surgeries on my leg and after a year of outrageous pain i was told i have rsd..several doctors all agreed and i didnt even know what it was..I can not walk now and I went through four years of hell so far..depression, fear, i just felt so useless..i was so busy feeling sorry for myself i forgot to think of my pets, the people i love..I sat one day and realized im in pain no matter where i am.. ‘so i stared getting out of my chair more,,i went to the mall and had coffee and watched people go by..I took a trip to cancun and sat on a beach,,oh yes i struggled and i was in terrible pain but you see i was in charge not the rsd..I felt so much better not wasting my life..was i in pain oh yes, was my leg burning was i sick to my stomach at times from the pain you bet..but i was not wasting my life in my recliner. Hearing others with a positive attitude has helped me a great deal thanks to all who write..for those of you like i was never trying to find good and quality to your lives..i will be praying for you..you see there may not be a cure for this awful disease rsd…but im just hoping and working to get into a remission..being negative will never help me heal..Im exercising everyday…i walk with god…peace and love,,judy

• How to Cope with Pain // Oct 25, 2008 at 4:30 pm

  Judy, thanks for sharing how you changed your approach, literally, one step at a time!

• Lorraine // Oct 25, 2008 at 7:04 pm

  hello everybody i am Lorrain’s 13 year old daughter. My mother is an insperation to me, i feel so helpless and sad when my mother is not doing well, i am usually on the bridge of tears when i hear stories about people who r in pain. I hate feeling helpless like that, it herts me to see her in pain. This is nice to talk to someone about this, it makes u feel better. It gives me hope, i know that they will find a cure, and i should be praying every day. Today is the day that i start, and pray for every one that has an illness. I hope that u all feel better and i send my belssings and pray for u all. Sorry if i did spell any thing wrong, i tryed my best.:) feel better everyone and never give up, their is hope, lots of hope. Never give up and always stay positive.

• How to Cope with Pain // Oct 25, 2008 at 9:00 pm

  Thanks for writing, Lorraine’s daughter, and for your good wishes. Remember, sometimes there’s nothing you can do to help someone you love, and that’s ok. It helps just for you to be there without doing anything else.

• KAREN // Oct 26, 2008 at 12:30 am

  AMEN TO LISA’S COMMENT, I AM WITH YOU 100%, AND I WILL SCREAM RIGHT ALONG WITH YOU!! I WAS TOLD ABOUT A TREATMENT I SHOULD TRY ONE THAT HAD A 50%CHANCE OF WORKING, YEAH SIGN ME UP!! COST?$100,000, and no ins co. will pay for it!! as far as anything positive for me, it has totally runined my life as of today..friends have dissappeared, i am on the verge of a divorce, in constant non-stop pain, the list goes on….the one thing i will never loose is my faith in the lord and knowing that he is with me through what ever hell this is, maybe after i have had it more then a year i will feel differently, at this time i don’t i pray for us all and i applaud the people that do have a diferent outlook on life at this time, for me NO WAY!!

• How to Cope with Pain // Oct 26, 2008 at 2:41 pm

  Thanks for everyone’s honesty. There’s no “right” way to feel, only what we actually do feel. For those of you who see no benefits, this post and comments may introduce another possible way for you to see your pain condition – again, not liking it, being thankful for it, or seeing only the positive, but an option.

• Lorraine // Oct 26, 2008 at 6:36 pm

  Hello it is Lorrain’s daughter again. Thanks for letting me relize that it is ok that u can’t help someone u love, u made me feel better. Thanks again. Hang in there everyone a cure is on the way!:) Just rember you are all worth fighting for.:)
  p.s. Feel better, and stay positive!:)

• judy // Oct 27, 2008 at 4:14 pm

  Karen, try to think like a catapillar when a catapiller is ready to give up and die,,it becomes a butterfly..Please dont give up. Sometimes i find a good attitude is the best medicine..All our lives have drastically changes..good friends leave us..new friends come alone..Keep your faith..I can not exercise much..my greatest give is i get my exercise by walking with god everyday..I like you also scream in pain ,,I can never get away from my pain..I have learned to make friends with my pain..beleive me its a process..Purhaps you can stay on this site for hope..its a good start..god bless you..judy

• How to Cope with Pain // Oct 27, 2008 at 4:17 pm

  Judy, wonderful – and supportive – wisdom. Thanks for sharing that.

• Kathleen // Nov 1, 2008 at 5:26 am

  Hello everybody out there. I have read all of the comments so far and it was really cool to read so much wisdom from the life experiences you have all had. Yes, I agree with all of u who said it is a process. I am often told by friends that they can’t believe how positive my outlook is or how well I handle the pain. I am also asked frequently if I wake up angry each morning at the RSD or my Higher Power. I work on this positive outlook daily. I attend a local RSD support group in the Phoenix, AZ area and we have amazing speakers who talk about the psychological aspects of chronic pain and illness as well as solutions to help live with these conditions. Last month, we had a laughter coach who had us go thru laughter exercises as a group. It was a total blast. We were also given little laughter books by the speaker to keep. I took extra to pass out and “leave behind” at doctor’s offices and the library to pass on the laughter to other people anonymously. The speaker loved that idea.
  I know for me it continues to be a process of acceptance and reliance on my spirituality and my support network each day. I have had to slow down considerably. My RSD is now my entire body and the pain is fairly constant and then gets worse as I am falling much more often these days. I try to meditate. I also write in a gratitude journal each day. I remember that it is not about having what I want, but wanting what I have, meaning right here and right now. I try to stay in today and not project into the future about the progression of the RSD. I have been working on this for six years now with the help of a great therapist, a fantastic physician, and a wonderful and supportive group of friends and family. I hope this has helped somebody out there who may be struggling. Know that u are not alone. We are all connected and we are not supposed to try to do this “life thing” on our own! I look forward to any responses and I will check back to this site soon. Thank u for the opportunity to let me share my 2 cents’ worth.

• Wendy // Nov 1, 2008 at 4:43 pm

  I have read all the entries so far, and I’m glad to find a site that doesn’t focus on drug dosages. It is heartening to have a kinship group.
  I have always been a positive person, but I have a problem with the assumption that seeing positives in chronic pain is the only path in learning to live with it. As several others implied, I have learned to have a life despite my RSD, not because of it. I had already learned the lessons of compassion and mindfulness, and had found my life’s calling helping others. Since my injury, I have lost my job, my independence, and most of my previous activities and hobbies, because my body is affected from the waist down. That means standing, walking and sitting are all limited. My marriage has been difficult. I have almost no family nearby, and no support from them. I live in a community famous for its lack of support- I saw it often as a caregiver. I was brought up with no religion or spirituality. And we all know about those friends who aren’t real friends. To make things worse, I have weird reactions to pain medications, so my pain is not well controlled. I think Barbara is right about someone like me not seeing positives in chronic pain. There are none for me.
  However, I continue to fight for recovery even though it’s been three years and I have had many complications, including instability of my primary injury site. Even though my own profession (MD) has abandoned me, I have not abandoned myself. I have developed a protocol for conservative treatment of RSD which is slowly making me stronger. The best advice I have gotten has been from others who recovered. They have all used the same protocol I am using, arrived at independently. One had RSD for 11 years.
  Once I am more stable, one of my goals will be to try to spread the word- that there is a way to recover, though it takes a lot of time, pain and tenacity. For now, I have to be proud of the advances I have made so far. I can read and write again, I can drive a little, take care of my house a little, and see my friends and loved ones.
  Thank you all for your comments.

• How to Cope with Pain // Nov 1, 2008 at 6:29 pm

  Wendy, I appreciated your comments. It sounds like your perspective is making use of previous strengths, rather than the challenge of pain bringing them out.

  I’d be curious about your conservative approach. If you’re willing, I’d be interested in you sending in what you mean through the “topic suggestions/submissions” at the top of the page.

• Lorraine // Dec 10, 2008 at 5:30 am

  Hello everyone and Happy Holidays!
  It’s a very tough time of the year for me and (I know for everyone else too) between the stress of the holidays and the cold nasty weather.
  I want to let everyone know about an article I read the other day from AARP magazine. I was really surprised to see an article about RSD/CRPS. The article was about Cynthia Toussaint and her battle with RSD for over 15 years. She is treating her RSD with alternative therapies. She has been doing physical therapy and a movement therapy called Feldenkrais. I have never heard of it, but I’ll try anything once (or even a few times). I would love to get off the meds or even just lower the doeses. I’ve been on morphine and oxy for years and I can just imagine the damage it’s doing internally. All the meds have completely destroyed my teeth; because no one told me that the meds dry out your mouth and you should constantly try to hydrate your mouth. Anyway, if this therapy works even a little for anyone it is worth finding out more information about it. If anyone knows about it please let me know more info. I live in Ocean County, NJ; and it’s very difficult to find any doctors, therapists, etc., who really know what they are doing. To find out more about the article the website listed is http://www.aarpmagazine.org/heath.
  God Bless all for a Happy and Healthy Holiday and New Year!!!!

• How to Cope with Pain // Dec 10, 2008 at 12:13 pm

  Lorraine, thanks for the info about the article. I enjoyed reading it. I heard her speak at a conference a few years back, and think we can learn from her story.

• lorraine // Jul 21, 2010 at 8:14 am

  Hi everyone, it’s been a long time……..I wish I could say I was feeling like I did the last time I wrote, but unfortunately I am not. I have a question for anyone out there. I have been on Avinza for the pain and for the breakthrough I have been on Oxy-ir. The problem is Purdue is no longer making oxy-ir and my doctor prescribed oxycodone, which is doing absolutely nothing for the pain. First I went through withdrawals from the oxy-ir (which I did not expect) and the short relief that I got from the oxy-ir was better than nothing, because now it’s nothing. Also I live in Ocean County, NJ; and my neurologist informed me several months ago that a law was probably going to go into effect by the fall of this year that he will no longer be able to write my prescriptions, because there will be a certain criteria for him to meet and it’s not worth the time and man-power for him to do it. So I will have to find another doctor (AGAIN!). I have been looking to see what law this is going to be, but I have found nothing for NJ; only WA state. If anyone has heard anything like this please let me know; and if anyone has had any luck with other breakthrough meds please give suggestions. Thank you and God Bless everyone!!!!! Hang in there!!!! Lorraine

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