Thank you for the kind reply's. I actuall agree that she needed a new doctor. I don't think he is right. I just mean that until they know for sure what we have I think we need to listen to every angle, question, and theory. Some are right and others are not but we just don't have any room to dimiss anything. The medical proffession has been cruel and sadly they have propogated psychological problems in chronic pain patients rather than adress them. SO many people with chronic pain will not even entertain the notion that they can be affected by stress or depression because they are ( rightfully) afraid they won't get medical treatment. Because of this the medical treatment reaserch pool is tainted by trial results that are inaccurate because the patients psychological health issues run over into thier medical issues.

SO many times I have seen people come to clinic hysterical. They are crying and yelling that they are in pain and no one is helping them. The doctors nodd thier head satisfied that thier notion of the all in your head hysteric has been perfectly illustrated. The patient is definately in pain but they also are having a hysterical reaction. The hysteria come after being made to think that no one will believe them.The patient now has a rocking anxiety / borderline personality type disorder on top of the pain disorder and both go under treated.

I may be in the minority but I think the psychological health of a chronic pain patient must be adressed first. If we are in the right psychological place we can actually manage quite a lot of pain. It is impossible to asess how well drugs and treatment works on an anxiety ridden patient. I am in no way blaming the patient or any one here. It is not a character weakness in us. It is actually a normal reaction to chaos BUT until the doctors and patients meet halfway on adressing the pshychology and remove the stigma we are hopeless to find difinitive treatment.

I am sorry if I come off harsh, I am actually a pretty sensitive person. I have just spent a lot of time on learning to live with it and I see this horrile merry go round that ruins lives that could actually be pretty bearable. OK.................I will shut up now

I see what you mean about the mind games, and I totally agree that the doctors take the easy way out most of the time. I know mine did.

One thing that becomes glaringly apparent, is the difference between alot if not most of the folks here, and you. You have had a lot of practice dealing with the monster called RSD. Most, if not all the rest of us lived ordinary, and maybe even extraordinary lives before RSD.

Sure some of us have been suffering along time, and some only a few short years. All of us have in common that it is here to stay with us since there is no cure. Being that you have had this problem since 3 years old makes you very unique, in that you have light years of experience dealing with this most atrocious pain.

That means you have not had a day that you really can remember without the pain. That in itself makes you a bit different than the ones that only have a few years of the pain, and have memories of days of zero pain, and a real honest to goodness idea of what no pain is like. It is like having the rug pulled out from under you, or giving someone a sentence to solitary confinememnt that used to run free.

Of course you will be better able to mentally handle the pain, since it is a life long journey that you have been on. Where as we have been on this part of the journey far shorter, and are haunted by what we used to be able to do, and able to feel. I am positive you have something we can learn, because of the experience you bring with you. Probably a slew more doctor visits, and doctors, treatments, meds, and ways to deal with pain, just to name a few off the top of my head.

For some it wont be so easy to accept some of the ideals because they are still mourning the loss of their life as they knew it, myself included. Since I got RSD when I was 41, and just turned 48. That means I had 40 years of a normal life to mourn, and only 7 years with chronic pain, and only really 4 years knowing what the pain was from since they only told me in 2003.

So everyone that hasnt had RSD their whole life, you must understand the difference we see things from the way mommajen sees things. I think it would be a far better place for me if I had grown up with the monster. That way I wouldnt even know my potential in life, just to have it ripped from me. Sure it would be a great challenge, but every goal would be something new, without the stigma of knowing I did, and could do far more.

I am taking from what she said that I am ready to use, and applying it. As I grow into my new RSD life I will be able to use more as my mind understands.

Thank you mommajen for your insights.

Hi Mommyjen--thank you for your post. I might have to "disagree" with you an a point or two. Let us look at a patient with cancer ravaging their body with PAIN..let us also assume that this cancer is rare,there is not much research on the TYPE of cancer , of HOW that cancer is caused. The patient is in PAIN, and not able to fuction very well.

To me, it makes sense to TREAT the patient FIRST, by all KNOWN medical means, and MORE IMPORTANTLY, get the PAIN UNDER CONTROL, before sending the patient off to a psychlogist or psychiatrist to address any underling pscyhological pathology that might be CONTRIBUTING to their lack of abiltiy to cope, or whatever.

Why should it be any DIFFERENT for people who have RSD?

NOT ALL patients with RSD should AUTOMATICALLY be "ASSUMED" to have "underlying psychchiatric" pathology.. MANY patients can be quite psychologically heatlthy UNTIL faced with unrelenting pain, whether it be from cancer OR RSD.

There is ample research on this subject--the concept that PAIN can CAUSE a psycholical consequense.. If the PAIN can be controlled, then the patient will be in a better position to DEAL WITH getting the psycholgical ramifications in better perspective--whether or not they have a personality disorder, OR they just plain need to LEARN to cope with RSD and the pain..and all the ways it can effect their life.

To do otherwise, is sort of putting the cart in front of the horse, so to speak, IMHO

Brokenwings

I see your question and both sides have merit. You are assuming that I think Cancer pain should be treated differently but I don't. The difference to me is that Cancer pain is a temporary situation. It comes on after normal health and results in cure or death. I believe a cancer patients mental health is priority one as well. My mother died of ovarian which is an insideous painful death. I can tell you that when her emotions were unmanagable her pain was as well.

Think about it like this. If you were trapped in a car in the winter with one dose of pain meds for 8 hours vs being home with the heat on in your favorite chair for 8 hours with a friend to talk to and one dose of pain meds. Which situation would be more tolerable? Our state of mind and anxiety levels are our environment. We actually don't disagree at all, we just have to get to know one anothers thought process.

Do I think I am better off for having been in pain my whole life? No I don't. It is never blessing to be a crippled child. I don't think it is harder at any age. A 3 yr old has a pretty spectacular life that is just as traumatic when it gets ripped away. I would rather have had the time to run and play. I don't feel lucky.

I think both issues of RSD has to be addressed. I believe the pain issue has to be addressed first and the physchological next. I noticed when I got the RSD I went into deeper depression. I have fought depression all of my life. I was suicidal at the age of around 9 or 10 but when I got RSD I got 10 times worse from the pain and I believe the frustration of not getting diagnosed as fast as possible. My PCP was giving me any med I wanted. I just couldn't take them I got to try Morophine, Oxycontin and anything else he thought might work until I got diagnosed and I just couldn't take them.

I remember crying for years and screaming sometimes in pain. Since I couldn't do the meds, it was take warm baths, sleep on heating pads, and anything else we could find to help. I lived in PT for 3 years. I was diagnosed with it in 2000 after TOS surgery but I believe I actually got it in 98 when I ended up with the TOS.

My PCP saw what a shape I was in and since the 3 Physchologist didn't want to deal with me, he took up my councelling. He' already been taking care of me for 7 years so he knew me I guess better then I did. I was so suicidal it was unreal.

I realize most of you weren't to that point but I do know with the councelling it kept my head sane. He coached me down many a night or day from doing something because of the pain.

I honestly believe I am farther along with my RSD care then a lot because of getting the medical and physchological care.

I get angry when there are people around us don't understand what we are going through also. It doesn't happen often with me but it has. My PCP did think 3 times I might be able to do some volenteer work or even help Bill run our antique store. Everytime I had to have surgery so he finally said no more.
Stay home.

I believe that most Drs. DONOT get the extent of the pain that comes with the RSD and everything else that comes with it.

I watch my PCP and I know it drives him nuts at times. When I was in there Monday I was telling him about how I kept my heat down at night. He said I reminded him of the 3 bears. I'm two hot, I'm too cold, but I can't never be like the baby bear and say everything is just right.

He actually doesn't know what to do for me anymore. He lets me try any meds still that I want but it ends up I can't take them. It's like a trial and error.

I think too what is frustrating is that the Drs. don't know what causes the RSD and again they have no earthly ideal how to take the pain away all together.

I took my boys to school this morning. I had to get up at 5:30. I have taken over the roll that Bill did to keep normalcy for them. I also try to catch at least one of their games whatever they are in at the time or their plays.

I do still deal in antiques. I have a house full also but a lot I won't give up because Bill bought them for me. I sell over the phone. We know so many people that if I advertise they come look. I am hoping this summer I can hit some yard sales to pick up more.

Again today the weather is in the 50's right now and it sets off my RSD worse. You never forget you have it at any time.

I'm very worried about this next surgery. I don't have any head pain at this time from the RSD but with this surgery coming up I am worried. I do know my PCP will jump right on it and try and calm it down and the surgeon said he would do everything in his power to keep it from coming out.

He was an ENT and he actually knew all about RSD and TOS. Isn't it ironic how Drs. in other fields can know more then PM Drs. I have yet to find a good PM Dr here in my area.

I don't think some of the Drs. know what it's caused by or how to deal with it.
Whether it is Neurologial or Physchological or whatever they want to say it is.

Ada

Hi Mommyjen! Thank you for another interesting post! Well, I think that is is unfair for anyone to assume HOW any particular person with RSD and pain is coping with their unique situation and circumstances.

For SOME people, it IS overwhelming, and once their PAIN is managed, then it might be appropriate for them to seek some Counselling in order to learn different ways to cope with it. Out of this "group" of people, there MAY be a "sub-set" wherein an individual who has had pre-existing personality issues that need to be explored. Also, there may be, yet again, another "subset" , wherein and individual with RSD and pain had "developed" a psycholical disorder BECAUSE of the PAIN, and needs professional, psychological assistance.

However, there may be MANY RSD sufferers who have been psycholigically "healthy" BEFORE they got RSD/PAIN, and who REMAIN fairly psychogically healthy DESPITE the RSD and Pain...

So, my basic point being, I think it very unfair to "assume" that ALL RSD/Pain suffers AUTOMATICALLY will HAVE psychological "issues", or will DEVELOP psychological issues. EACH PERSON IS UNIQUE, and HANDLES THINGS DIFFERENTLY. RSD can be mild, moderate or severe, or varying degrees, and can also strike at varying ages, so these factors must be taken into consideration, as well.

If one has had severe RSD from a very early age, did not receive appropriate treatment, etc., this would certainly have a more PROFOUND effect as opposed to an individual who developed RSD MUCH later in life, was PROMPTLY diagnosed, and received PROPER treatment. There are just too many "variable" to the equation to just "generalize"...

I think the issue of when or IF psycholgical "issues" need to be formally addressed is more appropriate for EACH INDIVIDUAL patient and their Doctor to determine.

DREAMBELIEVER: That is so awesome that you have such a wonderful, compassionate and understanding Doctor that CARES about you and takes the time to assist you with your pain/RDS issues! From what I have read on your posts, you have had A LOT ON YOUR PLATE. I am also sorry about the recent loss of Bill...words are very inadequate...my deepest sympathies.
May you have sunnier (and warmer) pain-free days ahead.

Most Sincerly,

Brokenwings

Hi Mommyjen,

Do you think Cancer is a mental illness?

Do you think RSD is a mental illness.?

What do you really think is the problem? Roz

I just wanted to say that my pain issue had to be addressed before I got coucelling. I couldn't sat still for councelling and as I said I cried and screamed in pain for so long and so much that my Dr. had to calm it down before he could start councelling me.

Another advantage I had. He sat me down and taught me how to talk to Drs. and what to say to them. He taught me not to go in like a raving maniac which I honestly did several times and to use the right words to explain what I was dealing with. I got the respect from the Drs. that I needed to get the help I needed. I do think we are in so much pain when RSD comes on that we can't always calm down to address the pain and medication and care issue.

Also I was going to say I have delt with pain all of my life. I was told I most likely had Fibro as a child. I delt with what was called growing pains to the extent that I cried all night with pain, I delt with cronic fatigue, bad teeth, and bad ears.

I am wondering how many of you had medical problems as a child. Do you remember? I can't never remember being out of pain. I couldn't run like other kids, couldn't play like other kids, I was a mess then too.

Have any of you thought about the shape you were as a child. I did manage to go on and work and put Susan through school and luckily even though I was sick in 87 I managed to work until she graduated in 91.

Thanks Brokenwing for you kind words. It's very good to have a place to come to talk to people and say things that you feel and be ok with it.

My thought is if you are in so much pain you can't sat still then you can't be councelled.

Ada

Ulcers can be caused by many things and an infection (bacterial or viral) is only one of the causes.

I am sorry but I feel I must say that there is absolutely NO suggestion in anything that Mommyjen has said to make us think that she believes our disease is a mental illness.
She is as much a sufferer as anyone else here but like many others has discovered that dealing with CRPS has more to do with learning to live with it as rather than making it a way of life!
I actually understand and appreciate her thoughts.