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    Old 12-03-2008, 03:31 PM   #1
    excowgirl
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    tell me how you get to the point to just accept this awful pain!!!!

    Compared to most of you, i guess i'm new to this awful rsd,my pain in my wrist is so bad I've pleaded with doctors to cut my hand off at my wrist but they said it wouldn't stop th pain they said other rsd sufferers have tried that, my pain is now in opposit wrist hand , feet ankles legs and hips.
    I've read were many of you have edured this awful pain for many years 5, 10, 15, 20 years, I commend your streangth,but don't see how youv'e been able to endure it, I honestly don't think I'll be able to be that strong, I know this may sound awful but unless by some miriacle some relief is found I don't know what will happen I have been telling my self I have to try and deal with as best I can untill my girls get out of high school one is a sophmore and one a freshmon, but some days like today it is really bad. I love my children dearly and feel selfish when I have these thoughts, but I know living with me and this pain is not always so pleasent for them,coming home to a mom who rarely smiles or laughs anymore because she just hurts to darn much.i've read where you say one day at a time but every day is the same as the day befor.Please tell me how you deal with it!!!!!!

     
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    Old 12-03-2008, 04:04 PM   #2
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi cowgirl
    Welcome to the board!! I'm so sorry you're going through such a rough time. Have you thoroughly explained what's wrong to your children? I"m sure they understand but hate seeing you in pain. I don't think it's a matter of accepting the pain...I think it's more a mind/body thing. I don't know if I can help much, but I"ll try...

    After almost 3 years with RSD, I have good days and bad. On a bad day my the affected limbs/body parts feel like they did when I was first diagnosed. The pain is excruciating, nothing helps. The good days are close to what I remember pain-free felt like although I'm sure it's not. I'm able to do about 65% of what I used to be able to do. Some of the diminished capacity comes from structural problems that are not related to RSD (as far as I know). Most of the time, I'm somewhere in the middle and my pain score is moderate to distressing, more on the moderate side - about a 6 on the pain score charts.

    I have become used to the pain because when I was first dx'd, my pain was off the charts...10+ + I never felt so much pain in my life! Childbirth was a walk in the park compared to what I was feeling. After a few months, I was able to differentiate between the levels of pain and my worst is about an 8. I don't know if it's my brain/body or the medication that caused the decrease in the pain I now feel. Possibly a little of both?

    This is with an immediate diagnosis, many changes in pain meds and a great PM & NP who I see monthly or more. Pain is subjective and one persons 6 might be a 10 to another. And, it's with a lot of pain medication. I'm taking 60 mg. of Oxycodone 4 x day and Lyrica 25 mg. 3 x day. I don't know how I would feel without meds...probably not too good.

    So, what this all means...it gets easier for some worse or the same for others. I'm curious to see what everyone else has to say about this. I hope you're feeling better soon. If not, you may want to think about changing meds, it's an ongoing process.
    Vicki

    Last edited by jessemom; 12-03-2008 at 04:07 PM.

     
    Old 12-03-2008, 04:54 PM   #3
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Excowgirl,

    I agree with Vicki - a different mix of drugs could make a huge difference. If your PM doc can't spend time with you tinkering with this then maybe you could find someone that will. Oxycodone works a little differently than Hydrocodone. And I am almost certain that I have read that Lyrica combined with an antidepresant is reported to be more effective than Lyrica alone. Also, muscle relaxers can be really wonderful - Soma has been a miracle for me (I don't understand wxactly why, I'm just happy that I have it). Do you sleep at night? Deep sleep supposedly helps the body repair itself. Maybe you could get a script for Ambien or Lunesta.

    I'm so sorry that you are hurting, it's awful, and I hope that you can find the strength to persist in trying to feel better.

    And I agree with what you say about your kids, I have a Sr. and a Freshman. The mommy guilt just about kills me some days. But kids are persistent little buggers and they'll survive.

     
    Old 12-03-2008, 06:25 PM   #4
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    Smile Re: tell me how you get to the point to just except this awful pain!!!!

    Hi and welcome to the board.

    In my 22 years of experience with RSD, I've found that dealing with it actually got easier. It took me YEARS to get to an "acceptance" stage. I finally realized that this is what was going to be with me for a while (or the rest of my life, but who really knows?). My life and outlook got a lot more positive after I was able to accept this. I also try VERY hard to take one day at a time (if that's too much, do one hour at a time, etc.). If I think too far into the future, things can get too overwhelming and I can get depressed very quickly. Life, in general, is such a mind game, in my eyes. Living with RSD is definitely one.

    Try not to think too far into the future. Nobody knows what the future holds for themselves, you know? It can make you crazy.

    Welcome, again. It's nice meeting you.

    Sharon

     
    Old 12-03-2008, 06:30 PM   #5
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi Excowgirl, I know exactly how you feel, I felt that way about my left arm. I have seen times that it has hurt so bad that I wished they could have removed it. It wouldn't have done any good though because my left shoulder also hurt as bad as my arm does at times. Sometimes my shoulder hurts worser than my arm. My shoulder can still hurt so bad at times even now that it brings tears to my eyes. Unfortunately, due to RSD and a condition called Cervical Dystonia, I have lost complete use of my left arm and most of the use of my right arm. My left arm is permenately frozen in a position where my left hand touches my left shoulder and the only time I can extend it is to put my clothes on.

    The first few yrs of dealing with RSD are the worst because you dealing with a whole lot of pain that is new to you. It does take time to get the right adjustment with your pain meds to where you can find some relief. Even though there will be very few days that you will really experience low pain levels. It took awhile for me to get the right adjustment to where the pain is managable every day. There are still times where I have good days and bad days. Days were you just want to sit and just cry and days where you can do a few things that you use to do. It is hard when you have childern especially when they're in their teens and want to go everywhere. Some how I have managed to suck in the pain and try to do the things my childern want to do even though it may cause me extra pain. Mine are bascially grown but I still enjoy doing things with them like going on little small trips to the beach. I even found the strength to go to NY with them on a trip on a bus even though it was tough to fight through the pain. I did enjoy it and the time spent with them.

    I think over time we just get use to the pain and know what to expect. I know when the weather changes my pain is going to increase. Also when it's that time of the month, I have an increase in pain. I also know I can't ride in a car for long periods of time or do a whole lot of walking. Just remember the first few yrs are the worse but over time it does seem to get better. Hopefully your doctor can find the right combination of medicine that will help with you pain. It is a trial and error thing to go through to find the right combination to help with your pain.
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    Arthritis

     
    Old 12-03-2008, 08:09 PM   #6
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Thanks Rayefaye,
    For your responce and words of encouragement.I am so soorry to learn your arm is frozen, that must be difficult, If I may ask what is cervical dystonia is that the cause of your arm freezing or was that due to rsd, the reason I ask is when I was 28 I had neck surgery they fused my C4 & C5 togeather and my recent exrays ones taken when I fell from the ladder showed alot of bone degeneration Ive had neck and shoulder pain and pain down my right arm, i'd learn to live with that, whatching what i'd do having to baby it, bt if i did more knowing i'd pay the price like riding my horse, but this pain is so different and so much more painful. i feel terrible for winning because your condition is so much worse than mine,

     
    Old 12-03-2008, 08:39 PM   #7
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    Re: tell me how you get to the point to just except this awful pain!!!!

    I do agree with Rayefaye when she said that the first years are the hardest. And that may be because it is not just the terrible pain and all the other physical changes that happen to us, but all the emotional garbage that we have to deal with.

    I have said this before but I think it is so true. We are now in a new chapter of our lives. The problem with that is that we did not choose this new chapter ourselves. We did want our lives to change and yet they did. So it is also getting used to so many different things. For those of us that worked and are now not able to work this is so hard to adapt to. I loved my job. Was at it 22 years and I would still be there today if not for RSD.

    The changes we put on our families and the guilt that comes with that can be mind blowing. We know our families love us and support us, but my husband didn't sign up for this when we got married. I know, in sickness and in health. But who knew it would really happen! We were young what did we know!

    They say we need to come to terms and accept this RSD. But man that can be so hard to do. I tend to do that on a day to day basis. On my good days I accept it fine. On my bad days I do not. And all the love and support from our families is not going to change the terrible pain we feel.

    So what do we do? I guess there are many options. We could choose not to accept all these changes and with-drawl from life. Or we can try every day to get up (if we can) and find something to smile at. For me without humor I am dead. My husband is a funny person and also very optimistic. After all these years of marriage perhaps some of that has finally rubbed off on me.

    Early on in this RSD journey I was down and depressed. I knew there was no cure for this and I could not believe that I would live like this for the rest of my life. In plain words, I was not someone anyone wanted to be around. So one day my husband sat me down and told me that unless somehow I found it inside of myself to learn to smile again, he didn't know if he could be around me forever the way I was. Well, I said, but it hurts and it's not fair and you don't understand. He said, RSD did not take away your heart, your soul, your love for me and never let it. Because if you let it, then it won. He said please Chris just try. Try and find that smile again.

    I cried and I cried. I prayed like I never prayed before to have God please help me find myself again. Don' t let this RSD win. Slowly I began to change. It didn't happen overnight but it happen. And now we do laugh again and we so love again. I don't think my husband was being mean by saying he couldn't live with me anymore like this with me being so depressed. I think he was searching for ways to help me because I was so depressed. Perhaps it was a little tough love, I don't know. But I thank God he did that everyday.

    Do I still hurt? You betcha! Some days terribly bad. Some days I can't move at all. But as long as I know that I have the faith to know that the days will be better again, I can then get thru those bad days. He does help me a lot when the bad days come because he knows I won't stay like that. I won't let it make me depressed anymore. As soon as those thoughts try to come in my mind, I really chase them away. Because I know in order to keep my sanity I must not let them come in. So far it is working. We must not let the RSD win.
    Take Care,
    Chris

     
    Old 12-03-2008, 08:43 PM   #8
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi Sandy
    Thank you too for your compasionate responce, I've tried lyrica but couldn't funtion and work on that particular med even on the lowest dose of 25mg, made me feel really drunk and staggery doctor replacedit with gabapentin Iam soppossed take 200 mg three times a day but have to cut it down to 100mg during working hours to keep a clear mind,Ive tried different antidepressents, zoloft , prozac, effexer but didn't tolerate them very well became more aggitated felt like a time bomb about to go off. I do take a generic for of flexeril during times I have bad neck spasams due to past neck sugery but hadn't thought of taking it as a sleep aid to help me to sleep at night.in answer to your question no I don't get much sleep if I get two to three hours a night i've done good then usually about 1 1/2hrs in the afternoon.
    The doctor had suggested changing my meds for hydrocodone to oxcodone but i was worried because i heard it can be so addictive, and also thought it may be stronger and worried how it would effect me at work, also fear if when or if the pain should get worse that I might need it as a med to move up to , you see i don't have medical insurance like so many others on here, but think i may consider talking to my doctor about trying oxycodone again if pain continues at this level.

     
    Old 12-03-2008, 09:13 PM   #9
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi Sharon
    Thanks for the welcome,and words of encouragement, I beieve your so right I do seem to get so much more depressed and it does seem to elevate the pain when i think about living with this the rest of my life I'm 48 yrs old divorced trying my best to hang on to my job because I'm soley finnacially responsible for taking care of my two daughters 16 & 15 . doctor has suggested I start sighning up for ssid but you have not worked for 12 months then their is time to see if you'll be approved some say 2 to 4 yrs how does one pay their bills and feed there kids during that time, my parents are deceased so I have no other family sopport system.please don't take this as sarcasm I don't mean it to sound that way but I do worry about the future and if I lose my job how i'll take care of my girls I know sence my rsd I've not been performing as well at work as I did befor and having trouble remembering things. I agree it does make you crazy, I need to work on not worring so much, but it is difficult not to.

     
    Old 12-04-2008, 01:58 AM   #10
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Before I had to leave my job I was put on their long term Disability. Well actually it was short term disability first and then after a bit when we knew that I would not be able to return to work I was then put on Long term disability. During the time I was receiving the monthly check for LTD I applied for SSDI. And I received my LTD until I was approved for SSDI. So I was able to have a income during that waiting period. My LTD paid me 80% of my salary.
    I first applied for SSDI right after I stopped working but was denied. I'm thinking that it was because I was not off of work long enough and I had just been diagnosed with RSD.
    I never appealed that decision. Then about a year or so later my doctor told me to apply again for SSDI because my RSD was getting worse and in her opinion I would not be getting better only worse. That was in May of 2008. I was approved for SSDI in the middle of October. I'm sure I was approved because of my doctor's help.
    I hope that this information was of some help if something should happen to you in the future. We all worry about the future but I can understand why you are worrying a little bit more.
    Does the company that you work for offer Long term or short term disability? That may be something you can look into. I would be lying if I did not say that during that time before I was approved for SSDI I was not always worried about money (still do). The LTD was always having me fill out papers to see how much longer I would need their money! Which that in itself was stressful. We have our own business. It has been in my town since 1946. It was my father-in-laws before my husband took it over. So when I had to stop working we had to find insurance because I always covered that from my job for the family. Luckily our children are out of the house and on their own. One is married and has a little baby. Our first grandchild. The other lives in a apartment and has a job. I am only 49 but there are days that I sure feel much older.
    Our insurance was so expensive. It was $2000 every three months just for me!! And another $600 for my husband. Well after a while we could just not afford that and went without insurance until I was approved. After that, paying for my husband's insurance was much easier. I just paid for it for a full year and it was $2400.
    My insurance is now with Medicare and they take out $96 a month out of my monthly check. Which is so much better. And my prescription insurance is $35 a month.
    I hope that this information also helps anyone else that may be thinking about applying for SSDI.
    Take Care,
    Chris

     
    Old 12-04-2008, 06:38 AM   #11
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Ex Cowgirl,

    Chris' replies are just awesome - there is a so much knowledge and experience in her replies. I haven't been sick that long, and my RSD has been moderate so far, and I still work fulltime and haven't had to deal with the disability issues like her. But, like you, I'm always in pain and I worry a lot about the future. I'm 48 too and my kids are really close in age to yours. I think you have to prioritize how to attack your problems.

    Does your employer provide a counseling service? Or can your physician refer you to one? You deserve to have someone to talk to who can help you to get a handle on things. There are social service agencies that might provide these services if they are not covered by insurance. For your sake and for the sake of your kids you must persist in getting adequate pain relief and eliminating the insomnia. Once you get to that place, dealing with the rest of your issues (work, disability, drug combos and related expenses, etc) could become a whole lot more manageable. By the way, Ambien is avialable in a generic form called Zolpidem. It definately saved my sanity!

    I'm sorry that are suffering and hope that some of this information helps you. (The CPA in me can't resist advising that you prioritize the way problems be addressed and emphasizing PERSISTANCE).

    Keep in touch, Sandy

     
    Old 12-04-2008, 09:52 AM   #12
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi Excowgirl, Cervical Dystonia is severe and uncontrollable muscle spasms of the neck. The freezing up my came from a combination of both the RSD and Cervical Dystonia due to the pain in my arm and the spasms running down my arm. The spasms started in my neck and shoulder at first, I would get muscle spasms that would cause my shoulder to raise up to my ear. Then one day out of the blue, I went to crank my mother's lawn mower for her and when I did sharp pains ran up my arm. It just like someone broke it and every time I would extend it, the pain got worse. So I went to the Urgent Care and they gave me a shot. After that I started having alot of trouble with the muscles spasms in my neck. These spasms would cause my head to turn to the left and my shoulder would raise up to the point it touched my ear. Then it got where every time I would try to extend my arm the pain would shoot up my arm like nothing I've ever felt before. Finally after seeing several doctors and my arm had start freezing up on me, I was finally dx'd with RSD and Cervical Dystonia. It's possible that the RSD caused the Cervical Dystonia but I guess I'll never be sure. I suffered alot of nerve damage to my left hand and my right arm as well as my neck. So I will never know for sure which triggered off the other. I had suffered for yrs with the RSD and never knew what was wrong with me.

    All of this resulted from a car accident I had when I was 19. Due to the accident I broke my right arm into severing the sensatory nerve. The turn signal went all the way through my left hand causing alot of nerve damage and leaving a permenante hole in my hand. I also cracked my pelvis in two different places leaving a bone chip floating inside my pelvic area. It twisted my ankle so bad that the doctors told me I would have been better of of I had broken it. For yrs after, I suffer horrible pain in my legs and arms but nobody never took me seriously because I was so young. The only relief I got was from a quack doctor who prescribe you anything for pain. Then when I finally quit seeing him and went to a legimate doctor, I was told I was suffering from being Manic Depressive.

    When they dx'd me with being Manic Depressive, they put me on some medication that like to have drove me insane. Finally, I got myself off that and finally went back to work only to still be in alot of pain and nobody knowing what was wrong. It finally took me having so much trouble with the muscle spasms and losing the use of my arm before someone finally realized what was wrong with me.

    I hope I have explained what Cervical Dystonia is and how they came about diagnoising it. The spasms are very severe and you never know when one is coming on until the last minute. Right before I get one, it will hurt real bad in my shoulder and then the spasm comes on. There's nothing I can do to stop them and usually when they're severe enough, I have to go to the ER and get a shot to calm them down. I do take a muscle relaxer every day to keep from having them as often as I used to but there are times they can't even stop them.

    Also don't never feel bad about whining about having RSD, it something that all of us with RSD do. I know my condition is rough but I have learn to except it and have learn what I can and can't do. I'm even checking into working again at the local rehab center. They feel like I can do certain jobs with just one arm so I just waiting to hear from them. As I said before the first few yrs are the roughest and you have every right to whine. RSD effects every aspect of your life one way or another.
    __________________
    RSD (Reflex Sympathetic Dystropy)
    Cervical Dsytonia- severe muscle spasms in the neck
    Arthritis

    Last edited by rayefaye; 12-04-2008 at 09:58 AM.

     
    Old 12-04-2008, 06:51 PM   #13
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    Smile Re: tell me how you get to the point to just except this awful pain!!!!

    Hi again,

    I didn't take your reply as your using sarcasm at all so don't worry about that. I understand that it's hard to try to take one day at a time and it's even harder when you're in the position that you are in being a single parent with no support. I'm very sorry to hear that your parents are no longer with you. I've never been even close to the position you are in (I've had RSD since I was 15 so I've had a lot of time to get used to it, plus..when you get a disease when you're a child, I think it's easier to come to grips with it since you haven't lived too much of life without it). I don't have kids and I am fortunate enough to have my parents with me still and they are amazing. I'm not saying this to gloat, but only to say that it must be very hard for you to not think ahead to the future when you have so much on your plate.

    So...no advice...just know that we are here for support when you need it.

    Have a nice Friday.

    Sharon

     
    Old 12-04-2008, 09:29 PM   #14
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    Re: tell me how you get to the point to just except this awful pain!!!!

    This question may be off of the topic a little but............
    Excowgirl, why did you choose that name as your posting name? I'm just curious that's all. Were you or are you working on a ranch. Or were you or are you a cowgirl? I just think that your name is so cool
    Doesn't take much to entertain me uh?!?! Ha! Ha!
    I hope you are feeling even a little bit better. I hope that I never came across like I was giving you more advice than what you wished for. Like this is what worked for me, so you should try it. Because if I did I so apologize. I was only trying to help because I do care about what happens to you. And I just think you have so much going on without no to little support. A lot of us have someone at home to help us when we are down. They may not be able to help when our pain is bad, but they're there. And that's all I want you to know is that I'm here for you. I may not be able to be physically there but believe me I would if I could! You're probably thinking, I don't think I want that crazy lady that close to me! But I hope you get what I am trying to say and that is; I am always here on this board if you need to vent, cry or share good news to.
    Take Care,
    Chris

     
    Old 12-06-2008, 01:13 PM   #15
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    Re: tell me how you get to the point to just except this awful pain!!!!

    Hi ExCowgirl,
    I see myself in your story exactly 8 years ago, and wanted to share the things that have helped me. First, I found a psychologist who specialized in pain management, although at the time, I really was not open to going because of my state of mind. I felt so hopeless. My pain management Dr. strongly suggested it to me during every visit. It was so great to talk to someone who fully understood the effects of chronic pain upon the mind..what a comfort..he reassured me that it was not me...it was the pain causing these problems. He referred me to an alternative therapies pain center where I learned so much about managing anxiety and stress. I learned deep breathing while lying on a large heating pad in a dark, quiet room, listening to relaxation cd's, which are available in many different places, even if it is the sound of running water or the waves crashing on the beach. I learned to do very gentle stretching movements that were based in yoga poses, that using a jacuzzi every day is really, really wonderful for RSD, that pacing your activities is crucial for managing your stress. I learned to do gentle Qi Gong (similar to Tai Chi), which encourages your body's own energy to flow in a healing way (Dvd available online), and quiet meditation where you just sit, preferably outdoors and just be mindful of the earth around you; the sun, the wind, the birds, the breeze blowing through your hair..and just yourself as you are right now..all designed to slow us down to be aware of ourselves and to treat ourselves kindly. I was amazed at how much these techniques helped me. I felt like a giant ball of yarn that was all tangled up in knots, and using these tools relaxed those knots and allowed me to accept RSD for the first time..I had been fighting it every step of the way, since it took everything away from me, and I was never one to give up..ever. I couldn't accept that if I just tried harder, I could still keep working instead of killing myself. I had just been laid off from my job of 20 years due to my health problems. I worked 4 years with RSD. I hope that some of this has helped you. I pray that you can find a pain management psychologist. Mine is a very compassionate person who had guided me through some very dark days. I highly recommend it.

    Last edited by chanceux; 12-06-2008 at 01:15 PM. Reason: removed link

     
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