[Karen67]

Ya know, if my ortho doc would have listened to my complaints about my burning, horrific, foot pain after my 2 knee surgeries, I might not be as bad off as I am now. I know I'm feeling sorry for myself this morning... I have my 1st lumbar nerve block tomorrow afternoon and I can't help wondering that if this would have been caught sooner, the nerve block may have had a better chance of helping. Ok, thanks for letting me rant! I think I need to get my positive attitude started somehow.

[Russell]

Karen,
Hey, rant away! That's what we're here for. Well, one of the reasons.
My doc didn't believe in RSD either until he tried straightening my fingers and my reaction from the pain sent him flying into a wall, lol.
Good luck and at least in here you're not alone...

[dd in pain]

I do not know I wish my dd doctor knew 2 years ago

[Karen67]

Originally Posted by dd in pain

I do not know I wish my dd doctor knew 2 years ago

I am trying to tell myself that what if I had gone to my PCP with 1st stage Ebola symptoms...I. bet my PCP would have sent me home with intructions of bedrest and lots of fluids. So, I guess where I am going with this is maybe my ortho doc had never seen my symptoms before and did not know any better?? I think I will hang onto that train of thought so I don't keep getting angry.

[birchlake]

And I also wish that my podiatrist would have known more about CRPS when he kept me in a camwalker for months telling me "it will come around; just have to give it some time".

Immobilizing the foot was probably the worst thing we could have done, and valuable time was lost.

CRPS is possibly one of THE most misunderstood medical disorders, even by professionals including doctors.

Once I was properly diagnosed, I spent many, many hours educating myself, interviewing (and rejecting many) doctors to be on my "treatment team".

[Russell]

Luckily for me my PT noticed the beginning symptoms of RSD and referred me to the neurologist that I'm still seeing. My orthopedic doc now has studied up on RSD and is becoming more aware of it...

[yellow]

I feel the same way, I spent a long time seeing my OS first too. I even at one point suggested to him that it might be neurological, but he decided to try out the rheumatological route instead.

But I try not to blame anyone for the diagnosis taking awhile. Like you said, they're probably not very familiar with the symptoms. My GP had never heard of it before until I told her.

It's still nice to wish though

[Karen67]

Originally Posted by yellow

I feel the same way, I spent a long time seeing my OS first too. I even at one point suggested to him that it might be neurological, but he decided to try out the rheumatological route instead.

But I try not to blame anyone for the diagnosis taking awhile. Like you said, they're probably not very familiar with the symptoms. My GP had never heard of it before until I told her.

It's still nice to wish though

Yep, it really would be wouldn't it? Oh well...I am grateful that it was figured out and now I am getting treatment.

[birchlake]

The problem is "they don't know what they don't know".

That is why you need to get MANY, MANY opinions before hanging your coat on their coat rack.

I saw one podiatrist that had only seen 2 cases of CRPS in 26 years. On to the next podiatrist!

Don't feel guilty about getting multiple opinions. You want to find professionals (doctors, therapists, etc) who are VERSED in this disorder.

You do not want one that doesn't have experience; you by default turn into their education. And you'll suffer for it.

Do this: ASK EVERY PROFESSIONAL you see point blank how much experience they have with CRPS. It may very well may be the most important question you have ever, or will ever ask. Ask them exactly how many cases have they treated. Have a conversation about how much they know. Don't assume just because they are a professional, they'll know. Not the case with this disorder.

[Karen67]

Originally Posted by birchlake

The problem is "they don't know what they don't know".

That is why you need to get MANY, MANY opinions before hanging your coat on their coat rack.

I saw one podiatrist that had only seen 2 cases of CRPS in 26 years. On to the next podiatrist!

Don't feel guilty about getting multiple opinions. You want to find professionals (doctors, therapists, etc) who are VERSED in this disorder.

You do not want one that doesn't have experience; you by default turn into their education. And you'll suffer for it.

Do this: ASK EVERY PROFESSIONAL you see point blank how much experience they have with CRPS. It may very well may be the most important question you have ever, or will ever ask. Ask them exactly how many cases have they treated. Have a conversation about how much they know. Don't assume just because they are a professional, they'll know. Not the case with this disorder.

Thank you for the advice!!! I have already run up against 2 docs that have never even heard of CRPS. It flippin' kills me!! How in the world can doctors NOT no about this disease? My new doctor (who did my block on fri.) has treated lots and lots of people with this disease. But he is a specialist in the pain field of doctoring. I thank God everyday that I found him!! Thanks again for your wonderful insight and advice. I sure can use it.