This is the truth! I feel like, and my husband jokes that, I am studying to be a neurologist. In our situation we have to know as much as we can just to protect ourselves.

I guess we all sound a bit aggressive and hard on the new PM doc. I think we are all just being protective of you. I also think most of us have a fairly short fuse when it comes to doctors and their lack of knowledge of CRPS. Good care is hard to find when you don't have a rare condition. With CRPS at times it can feel impossible. I've lived in a small town before and you're right, it can be super tough with limited options. And yes, I agree, it can be just as tough in a city with millions of people.

It is so hard to navigate the CRPS waters. I truly hope that they will listen to you and read all the research you provide, and offer options that work well for you. So much of it is trial and error because we are all so different in our response to medication, therapies, and treatments.

Please know that I think (imo) that we all meant well and didn't mean to cause any additional stress. Wishing you the best! VR

Az-di - I had the same experience. Surgeon didn't call it CRPS u ntil I specifically asked him questions based on my research. Now every time I see him he tells
Me how GREAT I'm doing. My husband doesn't even want to be in the exam room because the doc's attempts to minimize what happened to me (translation: cover his butt) makes my husband so angry. I didn't lose hair on my toes, so "its not that bad". REALLY?! So selfish and discompassionate

Hi murgir - sounds like a very reasonable plan. The PM doc deserves a second chance. Yes, the researching is a lot of work . We are here to help! And there is no better investment of your energy than in improving your health and well being. Let us know how it goes ~lottie

Ditto what Vrae said,

I certainly am happy you have what sounds like a very understanding and intrigued Neurologist - even if he isn't familiar having someone who shows you compassion with an equal amount of interest in your care will be of great benefit for you in the long run.

My comments (and I'm guessing some from others) about the PM came because it brought back the "sting of reality" when those words were said to me and for a bit.. I believed... only to be filled with anger as the disease progressed and more knowledgeable doctors confirmed the ignorance of the one who said it. The biggest problem with that thought is that often a doctor who thinks that will not aggressively treat the disease because they "think" it will eventually burn out.. so many suffer needlessly and sadly by the time it is realized that it will not burn out, the benefit of early/aggressive treatment is lost.

We all want the best for each other!

Here is a link you might find helpful that provides a ton of info on medications for treating CRPS as well as ones to stay away from. Even though it is a little dated the meds mentioned are often what is used today by versed doctors as a starting place.

Wishing you the best,
Tessa

Murgir - I think a doctor who doesn't know the disease but is willing to learn...is worth a dozen docs who have experience of CRPS, but don't keep up to date with research and won't listen

I think it sounds a very hopeful situation if he is interested and willing to listen. I know I'd love to be a teacher to my own GP if only he was interested!!!!

Fingers crossed murgir. Think of the good work you're doing if you can educate this doc about CRPS so that he can help more of us suffering with this thing...

Take care, and have a good day where you can.

Bram.

Bram you are so right about a doctor willing to listen and wanting copies of the info I took with me. Between my son and I we have had some rare things happen to us. When my son was about 10,he took off his sock and his foot was purple up past his ankle, I then took off the other one and it was too. We took him to the ER, scared to death. I first thought heart or vascular blockage. He was diagnosed with a rare disease cant remember the name and the doctor said "don't worry, it can cause kidney damage but that wont happen for another 5-6 years" !!! then went with pictures to dermatologist and he said it looked like Purpuric gloves and socks syndrome. Went to the other doctor again with the lab results to proved PG&SS and she said no he has (whatever wrong disease she said before) even with lab proof she would not admit she was wrong!!! Then I spent 30 days without leaving the hospital with my son after a accident causing gangrene inside the bone. that was 4 years ago. Though I would also add the PM said the reason RSD patients got so bad was because instead of doing the things they use to do, because of fear of pain they do less and that causes it to get worse due to inactivity!!!!!! I so wanted to say no you have that so wrong. We are in pain, that is what keeps us from doing the things we use to do!!!
O'Boy I know that statement will cause most to tare and feather him haha. Vrea, you caused me no stress and I know telling all of you about the inactivity reason for all our pain will cause you all stress. He also said "you do know this disease usually causes marital problems don't you" !!!! What a visit... what a stack of papers I will have for him highlighted in RED

Well ..... he sort of got a glimmer of truth in there. Inactivity will definitely make you worse. You must keep moving! However, the type of activity and learning how to pace your activity is the key. Before this happened I was working two part time jobs and opened a small business and taking care of my family. The hardest thing to overcome was moving at a slower pace and choosing selectively what I would spend my precious energy on.

Yes, Lottie, we all have to learn to measure what we can handle each day and limit it reasonably.

I doesn't burn itself out but you may be able to douse the fire. I remember going in to the docs with highlighted pages of info too!

That's my goal !

Sounds like your new neuro is a real keeper, Muguir. I'm not as confident about the sounds of the PM, but you're the one who has to like him.