[Adalaide]

Yesterday was my appointment with a pain doctor to confirm my CRPS diagnosis. I went into it scared that he would say something else, but still hopeful that I would finally have my confirmation and validation after 5 years. This is what I wanted, a diagnosis, an answer. I believed it would be what I needed to move forward and nothing more. He didn't even bat an eyelash at my symptoms before saying it sounded like CRPS.

Instead, I was surprised to leave his office with so many mixed emotions it is hard to describe. I am happy to have a firm diagnosis finally after 5 years. I'm also scared and worried about my future because now I'm certain that this is my future. And I'm mad, mad as hell. For 5 years I went to doctor after doctor, sometimes literally begging and in tears in the office for them to help me because I just wanted the pain to stop. They wanted to give me drugs without a diagnosis, called me depressed, said it was anxiety or somatization. Mostly, they dismissed me. Once, I even saw a neurologist and asked him if it could be CRPS. After explaining to him what CRPS and RSD stand for (not a good sign) he told me that there was no way I could fit that profile and sent me on my way. That was nearly two years ago. He could have helped me, and instead he half listened and I spent that time looking for answers again.

I wouldn't have my answer now if I hadn't asked my new neurologist if it could be CRPS. She told me my symptoms could fit, but that this pain doctor she works with is who she sends all potential cases too for diagnosis because he'll see it so much more than her. I have a diagnosis because I spent 5 years fighting, begging, advocating. I don't know how I'm supposed to trust any doctor. On top of this issue, I slipped through the cracks with undiagnosed celiac for over 30 years and the bad neuro misdiagnosed me with a very serious issue I don't even have by not doing the sole test you can use to diagnose it with. I need them, and I need their help, but I don't know where to start to trust any of them to provide anything approaching appropriate care or advice.

[visioniosiv]

Originally Posted by Adalaide

Yesterday was my appointment with a pain doctor to confirm my CRPS diagnosis. I went into it scared that he would say something else, but still hopeful that I would finally have my confirmation and validation after 5 years. This is what I wanted, a diagnosis, an answer. I believed it would be what I needed to move forward and nothing more. He didn't even bat an eyelash at my symptoms before saying it sounded like CRPS.

Instead, I was surprised to leave his office with so many mixed emotions it is hard to describe. I am happy to have a firm diagnosis finally after 5 years. I'm also scared and worried about my future because now I'm certain that this is my future. And I'm mad, mad as hell. For 5 years I went to doctor after doctor, sometimes literally begging and in tears in the office for them to help me because I just wanted the pain to stop. They wanted to give me drugs without a diagnosis, called me depressed, said it was anxiety or somatization. Mostly, they dismissed me. Once, I even saw a neurologist and asked him if it could be CRPS. After explaining to him what CRPS and RSD stand for (not a good sign) he told me that there was no way I could fit that profile and sent me on my way. That was nearly two years ago. He could have helped me, and instead he half listened and I spent that time looking for answers again.

I wouldn't have my answer now if I hadn't asked my new neurologist if it could be CRPS. She told me my symptoms could fit, but that this pain doctor she works with is who she sends all potential cases too for diagnosis because he'll see it so much more than her. I have a diagnosis because I spent 5 years fighting, begging, advocating. I don't know how I'm supposed to trust any doctor. On top of this issue, I slipped through the cracks with undiagnosed celiac for over 30 years and the bad neuro misdiagnosed me with a very serious issue I don't even have by not doing the sole test you can use to diagnose it with. I need them, and I need their help, but I don't know where to start to trust any of them to provide anything approaching appropriate care or advice.

Wow...

The big moment. We all remember it. The most difficult and emotionally convoluted moment in most of our lives. You finally got the answer you were looking for. Now you know what you're up against, at least as far as the medical world defines it.

And how does the basic medical world define it? Reflex Sympathetic Dystrophy? Or Causalgia? Or Complex Regional Pain Syndrome I? Or Complex Regional Pain Syndrome II? Or Sudeck's Atrophy?

My point is, the medical field gave you an answer that they don't understand... Complex Regional Pain Syndrome? Really?! Just the name itself is friggin' MEAN. (Can I say friggin' Che-Mar?? ) Explaining to people that the reason your life is a living hell is because of something called "Complex Regional Pain Syndrome" is just fuel on the fire that other people already don't understand. It's why you "don't know where to start to trust any of them to provide anything approaching appropriate care or advice."

Mixed emotions because you feel validated that you knew all along instinctually, and no one would listen. Happy for a sort of closure, a sort of reason, to validate the past 5 years, but deeply afraid of what that reason means for the future. Determined to get a definition of what you've been dealing with... and now you have. And now you're mad as hell. Made me mad as hell too.

What if you used this same determination for an answer to create a NEW answer? What if...

What if you could channel your anger into pure positive determination? What if the anger and the sadness and the FEAR went away and you were left only with the healing process, and you got to watch as the pain slips away back into the nothingness it came from. And the real you emerges all over again - what a beautiful process it is.

Adalaide - I am a little bit nuts. I am sorry if this is an inappropriate response in any way.

I just want to see every last person who's ever had to deal with the hell that is RSD to live in the joy that is rightfully theirs, and I want that to happen NOW

Keep your head up Adalaide.

[RSD ME]

I'm sorry you had such a hard time getting your rsd confirmed. Since I've had rsd, I felt like I struggle every day trying to get my family, friends and drs to understand what I'm going through and research new things that can maybe help put this monster into remission. I usually get blank stares with no desire to try something new. My drs don't seem to want to help me with the new drugs out there. I feel that because I've had rsd for about three years, that they have given up on me. My family keeps telling me that if just tried harder to loose weight and exercise that I would feel better. I get criticized by my drs when I bring new drugs that may help to their attention. They say they can't help me with that. To see a rheumatologist. My rsd is spreading and they won't even give me anymore nerveblocks. I was told to wait unit Spring. Why am I waiting? My drs hardly ever see me anymore. They keep cancelling my appts and have me see NP who don't know or care to know anything about my condition or tell me they have seen worse and that I'm doing good. On my last pm appt yesterday, I told that same NP that even though I may look normal to the eye, the constant pain I feel inside from rsd is horrific. I was given another blank emotionless stare. I don't care, at least I stood up for me and my rsd family here on this forum. My family pretty much thinks I'm lazy because I don't keep the house clean enough and don't contribute enough to the family chores. I wish I could tell you that it's an easy road to travel when diagnosed with RSD. But in my experience, it's been one of the loneliest, painful and depressing roads I've ever traveled. On a positive note, I can say that because I still need my family and drs for support, I have become more proactive in learning as much as I can about RSD and never giving up trying to get them to know and understand the horror I live in everyday of my life. It has made me a stronger person because I won't give up trying to raise awareness on rsd and will keep trying to educate my family and drs and np's until they start to get it. My advice to to you is to never give up trying to find the right drs to help and never give up trying to get better and most importantly never give up on trying to get family and friends to understand how devastating having rsd is. Having made friends on this forum has given me the strength to do that. Hold on to your friends here. They are priceless.

[RSD ME]

Hi again Adel, I didn't mean to sound like such a downer before. Sorry. I'm just having a bad day. I wanted you to know that the best place I think to start is by finding a good neurologist and pm dr and gp. It may take several tries before you find the right ones, but as hard as it is to trust them right now, there are some good ones out there. You just have to keep trying to find them. Just like your meds for rsd. You have to keep trying them until you find the ones that work. It will be okay. It will happen and you'll learn who you can trust and who to avoid. But with a good support system of family, drs and friends, you will be able to cope with whatever rsd brings your way. There are a few good rsd sites online that will help to educate you and your family, friends and drs about rsd. I also check healthgrades on my drs before I see them to check on malpractice history if any and their ratings from other patients. And like I said earlier the people on this forum are awesome. They understand better then anyone else what it's like to have rsd, because them have it too. Again, I hope you can forgive my whiney text above. Sometimes the meds I take bring me down and make me very irritable. One of the lovely side effects of narcos. But with the right drs, you can manage your rsd and still live a good life. Maybe not the same life you had, but a good one just the same. It's just takes more work to accomplish that. Hang in there my friend. It took me about six months for the shock to wear off when I found out I had rsd. I went to a psycholoigst and psychiatrist to help deal. They make it a little eaiser to cope too. I'm here if you ever need a friend and I will be praying for you. Take care.

[RSD ME]

P.S. to Vision: you are NOT nuts. You are just trying to help and I agree that being positive is important to trying to relieve stress and feel better. It's not always easy but I agree worth it in the long run. Anger and resentment only cause more stress which causes more pain. Thanks for the upbeat words.