Hi Diamond Lil!

Thanks for agreeing with me on that type A stuff. I was trying to say it but I think you did a better job!

Rain

Just playing devils advocate for a moment. Why does it matter what he calls it? Nothing is really known or set in stone with RSD. A pain syndrome is no less legitimate than a neurological illness. I think a lot of us with RSD have been be littled or under treated. It tends to cause people to be defensive and be less open to ideas that don't seem "serious". A pain syndrome is a serious thing. I have had RSD since I was a little kid and I have been down all the roads. It took a long time to let go of that defensiveness.
I just encourage everyone to be open to what ALL doctors say. Some are right and some are wrong but the fact is there is not enough evidence in any direction to say what rsd is. It isn't in our heads but our heads can hasten or impede recovery, function, pain levels. Our heads are more powerful than any disease or syndrome. It can be a trap to over identify with your condition. If too much of your life is invested in being in pain you won't get better.
If your friends are fellow patients or your socalization consists more of support groups than outside interests then flip that around. For every RSD post or blog entry write to a group you share a health interest in, even if you can no longer participate. SOmetimes the incentive to get better disapears because with out the condition we wouldn't know who we are or how others would know us. It is not a character flaw or a weakness, it is human nature to integrate every chronic situation in our lives into a way to serve us in some way. Every person with and illness can find at least one way to make the disease work for them or else we would all jump off the bridge. SOme people make it a way to reach and educate others, some use to to keep people close, others to push them away.............
I encourage people to take an honest look at how you make it work for you ( a normal natural thing to do! Nothing shameful about it!) and then be sure you have other ways to meet that need in the event that you do get better. It is hard to keep it all in balance and we rarely ever do but just always stay aware of the tendancies and traps.
The research on chronic pain treatment is very tainted due to the fact that Doctors don't treat the psychology of chronic illness. I have know patients who get a SCS and for the first 6 months they feel great. Then they realize that all thier friends were sick and now they don't have anything in common with them. They suddenly have to work after years of being home. People don't check on them as much. The world gets very bid very fast. Because they feel ashamed of wanting the life they knew best the SCS suddenly doesn't work anymore or the don't pay attention on the steps and fall down and get hurt again........ Feel all that is normal and doesn't mean they were faking all along or that they enjoyed being ill. But we have been made to prove we are in pain and beg for attention that we wouldn't never admit that to the doctors!
Some much is out of balance in the treatment of RSD, try to keep an open mind and an open heart. I hope this is not offensive to anyone. Believe me it comes from a caring place of MUCH experience. Blessings

Hi Mommyjen,

I'm not certain who your post is directed at, who do you think here is preferring to be sick rather than well?

I think fixating on the "pain syndrome" phrase is unfair, I would have thought it is clear that this post is about doctors either trying to treat their patients for a psychosomatic disease rather than one with physiological causes, or who are hopelessly out of date. As has been shown in other posts, a doctor's education includes minimal information on CRPS/RSD.

I certainly won't be open to listening to "ALL doctors" some really are (using a phrase recently introduced to the forum which I love) pindick doctors who tell us that RSD is "all in the head" or follow debunked protocols.

I think you're delivering your lecture to the wrong people here. I can't think of anyone on this forum who is the pathetic wallowing miseryguts you seem to be talking about.

Good for you to be such a breezy, pull-your-socks-up "shape up and fly right" sort of person; I think we're all allowed to live our lives and deal with our problems in our own individual way and don't need marshalling or lecturing.

Having said all that, sounds like you've got your pain issues sorted out by a very caring and excellent doctor. You're very lucky indeed.

All the best

This is exactly what I was talking. about where do you read that I accuse anyone of wanting to be ill???? In fact I have validated that we are and are mde to feel like it is our fault. The is no lecture but it appears to be exactly in the right place.

Just a little note here - For the Doc who thinks this is all in your head....I have a friend who is being told this same exact thing from an IME, the IME states that this friend has Munchausen....So I know EXACTLY what your going through right now and the frustrations. This IME was bought & paid for by the oppositions insurance company and this "diagnosis" (which btw he is unqualified to actually diagnose) was nothing but a sham!

My point is this...My friend had a MMPI aka psych test just a few short years before the RSD, she had to have the test before having a sugery. The Psych Doc then stated that she was a sound, stable individual and a good canidate for surgery and should have successful results as she had a good, positive personality and attitude.

SOOOOOOOOOO - Mr Joker Dr with the "it's all in your head attitude" and it's a "Predisposed personality trait" - Go Powder Your Fanny!!!

Do they do this with people who have arthritis!!!?? NO, because they can "see" it on a scan - Unfortunately it's impossible at this point to for sure 100% see RSD - Thus...the disbelievers....

How does your Dr explain such things as temperature changes, skin lesions, muscle spasms, things like that, that are symptoms/signs of RSD?

It really p*sses me off when Doctors do this to their patients. All it does is cause them further undue stress AND stress can make the RSD worse. Something someone with RSD does not need!! Again...best advice - find a real Dr and not this quack who obviously does not have the education or knowledge behind him.

I do have good doctors but my condition is as unpredictible and hard to manage as any of you. I got this at 3 after an accident. It ate my childhood and much of my adult life. I am on long term narcotic therapy and in and out of a wheel chair. I have 2 babies and my socks are never all the way up!

I agree hubby, those situations are what causes people to overdentify with illness. We have to live it to prove it. They need to help us live WITH and AROUND it!

Why does it matter???!!! Do you really want to be told that you have a psychological problem/ mental illness that caused your body to "do this to itself", and that you need psychological help? You would believe it if the doctor told you that you that you needed psych-help?

It matters because I need to feel 100% confident and secure with my Dr.. If he believes that I have a psychiatric illness and I KNOW I DON'T (my RSD started with an injury) then would you really tell me to stay with him anyway, even though I am uncomfortable??

Hi Mommyjen,

I don't understand what "causes people to overidentify with illness" means, could you explain, please?

All the best.

Hey,

This is hard one.

Mommy Jen - I can see to a point where you are coming from. However, I don't feel you phrased it in an appropriate manner. If what you mean is that it is important to try and keep living in the "real" world as well as the RSD world then I understand you. HOWEVER, I personally believe it is very important to have support from others who know what you are going through. I cannot think of a single person on this board who feels as you express. I have met one person like that with RSD (not from this board) and her symptoms were far more psychological than physiological - but it was shown by her and her doctors that she had conversion (went in to a mental unit and was walking within 2 days just through "normalisation" instead of physio etc.) However, this is very rare.

I developed RSD when I was 16. It is horrible to live with. I am now 21 and at uni. However, my "normal" mates have no idea what RSD is, they don't know what to say other than "poor you" which is something that I don't believe in. At the moment I am thinking of having a DBS inserted - most of my mates don't even understand what it would do - they are all for it if I want to do it, but they cannot understand the fear involved with messing with RSD and surgery. PERSONALLY I use this message board to enable me to be "more" normal. By talking to others with RSD I get the support I need and am then able to rarely talk about the RSD with my friends - who don't understand anyway (if this makes sense?). As you talk to people on here you get to know them and develop friendships - based on understanding and caring, empathy and support.

If I may be so bold as to ask, but if you believe support groups are so wrong.. then why are you here? If you were to look through the archives of this site then you would discover that some people get better, some people get worse, some stay the same... being a "support" group doesn't disable us, but enables us. Yes, we must live in reality, but at the same time, pain is all our realities and though you may have found amazing narcotic and social means to manage your pain some of us haven't.

Reality and the real world are important. But so is OUR DAILY REALITY of pain, suffering and disability. Several people on this site are house or bed bound through pain. I don't know if your RSD/ pain has ever been bad enough for this - but I know from experience that non RSDers don't understand this. They don't know what to say, though they want to visit they are scared they'll say the wrong thing, and after a while they stop visiting because they don't know what to say. you're the 17yr old sobbing in bed because you can't move and it hurts so much whilst they waited abit longer to visit because they still had hangovers from the night before.

If I woke up tomorrow and was pain free then I would do everything this RSD has stopped me doing. I would throw the wheelchair away, kiss goodbye to the carers and continue with my life. As would many people on this board. Is the relapse you are talking about a results of your own experiences? I have known people with RSD recover - and it is hard, there are psychological difficulties with adjusting to being more normal - generally to do with trying to pace themselves to AVOID the flares or deterioation in their condition - they discover that as they can run/ walk or whatever and want to do it all the time - then they are injured and back at square one.

I don't feel that many people on this site will appreciate this almost evangelical call to abandon other RSDers and pretend to be normal and let our disabilities work for us (that means I will soon be a circus freak - coming soon to a town near you - the amazing agonised pretzel queen) - it may have worked for you, it works to a small extent with me, but everyone on this site is an individual fighting their own battles. Have you considered that perhaps the thing that stops some people throwing themselves off bridges is that they are understood? That other people understand the agony, loneliness, fear etc of living with this? I am guessing from your message that you have never felt alone with this disease, never had questions and in fact must be an absoloutly amazing wonderwoman who can cope with all the emotional and physical aspects of this evil condition without help.

If so. Please share your magic ways with us so that we too can be cured, or at least cured to a point where we don't need support from others even if we still need wheelchairs and medication. If not, then please think in future about possible distress you may be causing people and that until you have walked/ rolled/ crawled/ been pushed a mile in another person's shoes you don't know what they are going through.

Frogga