RSD/CRPS is "Managed", not cured.
 

I'm kind of a newby here. But, I've had RSD/TOS for 26 years, which makes it half my life.
I've gone 7 of the first years with NO Diagnoses. NONE! Some doctors telling me it was in my head. (I owned a very successful business, and I loved what I did, still do).
Finally, a chiropractor recognized my symptoms from another patient, and sent me to Dr Schwartzman, at Jefferson, in Phila. He's moved on a couple times since.

This was when the RSDSA.org was first forming, and I had a brochure.

He gave me the diagnoses, along with TOS, and I wept right there. Not manly.
(Of course, my first wife didn't bother to come to any doctor with me).

I got tested, this, prodded that, blocked here, there.

Then, I moved to Dr Knobler. A more gentle, kinder way than Dr Schwartzman, many have said, but, they WERE partners, and those are Opinions!

I've been with him since the very early 90's. (And, been back to Schwartzman for the ketamine infusions).
And, through all the years I've learned several things, (and will probably edit this post, or add to it).
You get hurt. Chances are, just because of circumstances, you're going to get hurt again...
I was VERY busy. Working on Two business's , and raising my two children myself. (wife 1 didn't want to be married to a "druggy", but, went out to party the town). OK. I was happy to raise my children.

I did remarry, and wife two had a kind of nervous breakdown, her younger sister died of colon cancer, and she went into early menopause, and depression. I caught her filling my zanaflex scripts, herself, and just sleeping all day! (What?) Yep.
Then, She threw me, and my two children out of MY house, Three times!
Philly is tough on this, not to mention the affairs she had with the police.

So, now this divorce is upcoming as I write, and she is very well organized, I've been paying her out of my disability (Private), while she's been working.
She didn't report her income.....
I had a TBI in 98, and was in a kind of walking coma for several years. She took great advantage and emptied my bank accounts, etc....
And, pocketed the monies the business's were bringing in.


Anyway, the entire point of this post is NOT to dwell on my mistakes, or misfortunes. WE will All have them!

The Point IS,
That we do NOT go to Dr A, B, or C, and C is the Cure.
No such thing.

Get used to it.
Get used to being a "Manager".
Check out the definition.

This is something that we "Manage". We Do Not cure it!
Unless, you're one of those lucky few, who get it right early.

The Neurology Now article I've been sending to ya'll, has a young lady, who ended up backpacking through Europe.
I assure you, that's NOT the end of her trials.

I have a friend who, with the RSD, (I met her in the hospital taking the Ketamine infusions 20hrs/day 10 days.
With Dr Schwartzman.
She hiked the Appalachian trail. She was in fantastic shape!
She is in worse shape now, because of a fall, or two.
Than EVER.
It got ahead of her, and some meds and other anomalies put some weight on her. She's now got to work that off. Then, her husband, fell off a roof while at work, busted his foot all to hell.
Two at home, disabled.

To go back to the beginning,
We are Managers.
WE must manage our lives, our pain, any other lives that intermingle with our own, and any physical activities out of the ordinary, must be managed.
And, we must exercise!
Use it or Lose it!
(Think about that. You get to a point that's so bad, how can you exercise?)
These are the folks I worry about.


The triangle of RSD CARE.

Your Meds

You and your Neurologist > Together, strong communications.


Your Mind / Attitude

You and Your NeuroPsychiatrist (Pain management psych), Strong communications.


Your Body.
EXERCISE. USE IT, OR, LOSE IT!
No matter what!
Get to a warm pool, and walk, walk, walk!
Or, just walk anywhere you can!



Some days, we just "go down" with the pain.
The next day, we've got to Rally!
And, exercise for two days!

Keep Moving!
Don't turn on the TV!
Until you've taken a walk!

Move your ***!

Love to Ya'll,

Pete
AintSoBad

Pete,

Your words are so true. The problem is not all people get to where you are for a while.

It took me 5 years to quit looking for relief around every corner. It also took that long to get doctors on my team who one understand RSDS and two they want to take the time to work with us. My PM doctor, he has been on my medical team for 3 years. Got so frustrated in the beginning that he told me from now on make sure they allow 30 minuets on my schedule for your appt. My Primary doctor who has been with me from the beginning tried to quit on me after he gave me the never give up never quit speech. I wrote him a letter he called me and we have a great relationship now.

My point is just as we are dealing with a health condition that doesn't act the same in any two people. We are dealing with people who have RSD/CRPS who's coping skills are all different.

I learned the triangle of care when I had my first appt. in Philly. It is important that you shared that in several of your threads. IT IS VITAL in one's care.

Exercise is as vital for our RSD management as our medications. For me in the water is best we are weightless and it is much easier to exercise.

You have spent 26 years getting where you are with your management of RSD/TSO. Your knowledge for those in need will be needed here. Use the triangle of care as part of your sign off for threads, like some people use quotes in their sign off.

Take care,
Sherrie

Thanks Sherrie,
You've been a great help to me.

No matter how long we live with this Monster, support is still a great thing.

I don't know more than anyone. And, I don't want to "come off" that way.
Dam, it took me 7 years for a diagnoses!
Talk about going nuts! In the 80's Nobody knew what RSD/TOS was!

Now, I have new, bigger challenges. My God just doesn't have rest on my menu!
Haha~!

I will take what you said, and use it!

You are an incredible resource, and friend, Sherrie!

Thank You!

peace and love,

good night,

Pete
ASB

Pete
You have great words of wisdom for all of us. Some days I just don't want to get out of bed, but I have horses, dogs, cats that all need me to get up and feed them, clean stalls, some days I need to be on the tractor for dragging the manure, I'm planting a nice garden, and hopefully will have fresh veggies this summer. Even after all that, I still have to sleep so much. It's the meds what can I say. And when I want to have a pity party, I just remember those that have it so much worse then I do.

Hugs
Mary
:grouphug:

Thanks for the Message
 

aintsobad,
I've got to say that I agree with you have said. I have posted about the daily job of managing RSD. HBOT is just one of the tools I use. There were however days, that I did stay in bed. Days that I felt very sorry for myself. Now 20 years into this full body, and older, I try to make the most of each day. I also have posted the best advice I ever got was "don't stop moving". I am so glad that you stressed that, because the out come of NOT moving is atrophy.
All the best Di

hey pete
 

pete
your advice and post remind me of a friend that helped out alot in the begining of my RSD 11 yrs ago!!! thanks for this it does help alot of someone like you..

i learned from a doctor years ago you have to make that decision do you want to live or die , dont let rsd ruin your life. i know how hard it is period! but never stop moving like you say this will help all of us. we all have those days when you dont want to do anything at all. and your right about the triangle of care for RSD this is vital. and i have learned that having a positive attitude also makes your doc visits easier. i try to be upbeat as possible let them know how bad it does get but i do have those days when i feel better.


and like you i am managed not cured at all and that is all i can ask for because i have been everything in between and managed works alot better LOL


thanks for your wisdom!!!

carrie

To All,
who wrote me,
First, I want to send my appreciation, my love.
Second, I want ya'll to know (I"m a Yankee Rebel), that I certainly have those days, when I curl up, and pull the blanket over my head! For as long as it takes.
(I haveto somehow, make an excuse in my head somehow, I'm sure ya'll understand, as I've NEVER worked for anyone, besides my parents, and myself.)
It's GOT TO GET DONE!
So, sometimes I sleep,
sometimes, work deep into the night....
As, it seems I'm doing tonight,
But, ya know what?

I know, I've gotta be UP fairly early tomorrow!
It's one of those
"How the heck is this gonna work" days.

I'll letcha know, but, ya'll know the answer already!

You are all really great friends.
I hope I'm not a quickly fading star here.
But, I rarely leave a forum.

Too many God's Good People here!

Pete
ASB

Pete,

I know this was not the point of your post, but reading your story got me thinking that those of use with a supportive spouse need to realize how blessed we are.

I hope things are looking up for you, both medically and personally. Thanks for opening youself to us and welcome to the forum.

Mike

Pete,

First of all, OMG what a story. 26 years with RSD! I can't imagine... My hat's off to you!

You are right, once you have RSD... better watch out. Into remission? Best be careful. It might still get worse.

I have RSD in my legs for almost 14 years (diagnosed almost 3 years into it), and thought that it would stay there... until January 2008. I started feeling the same symptoms in my arms and hands. It spread! I still have no idea why that happened. It just did. I didn't injure my arms or hands, it just spread. Just like that.

It's a horrible condition to have, and I think that once it's in your system, it's in your system.

You are right, you manage RSD and you can only hope you get into remission (in a lot of cases with lasting problems), but there is no cure.

Hey Pete -

I grew up in the Philly area, too (the South Jersey side). No wonder you are so cool! I still have family that lives in parts of southeast Pa., Delaware, and South Jersey. My parents retired to a little beach town on the Jersey shore, but spend the winter months in Fla. I miss Philly very much and can always hear that special "twang" in someone's speech, even 25 years after moving away!

You are so right. Thank you for your input. It can be very hard to stay focused, when every day brings a new set of challenges. I am missing the phych part from my triangle, and I think it is badly needed. Its been about ten months since my ortho diagnosed "probable" RSD, and four or five since it started to spread. The issues are never ending - WC denials, a lazy RI PM doc that screwed up, good Boston PM docs that deserve to be paid that haven't been because of evil WC adjusters, personal insurance that is junk (just when you think you've got a back-up you find out that United Health is a terrible plan and pays doctors NOTHING) a head that hurts a LOT, feet that are starting to not work well, etc. And spring just doesn't want to arrive here in this corner of the US.

Sorry - didn't mean to go off on such a rant. You are an awesome inspiration! I'm often a wreck and I haven't been sick that long. I don't know if I am going to be able to keep it all together as well as you. But I plan to try. I have so many responsibilities - kids, a job, a wonderful husband, a yard, etc. THAT is what prevents me from curling up in a ball under the covers with my head buried under a pillow every day!! Well, that and college tuition bills right around the corner....I NEED to keep moving.

Take care, Sandy

Hi Pete and everyone....my friends....I live by your triangle Pete...if you get thrown :Cowgirl:get back on the horse:Cowgirl:!!! I also understand everyone is different and there triangle might be misshapen at times. Just like Drs. practice medicine in hopes of getting it right we must keep practicing managing RSD no matter what hell or high water. Thanks Pete for the great speech. Words to live by. XX

Debbie

every time i come on to this site and read it gives me so much strength hope and just a feeling that someone can really say i know what you mean. i think also it is so important to use it i wish it was told to me sooner because rsd does set in and fast i didnt use it i left my foot in that walking boot and well i lost it, i cant bend my toes or ankle, foot is now in a inward position like a clubfoot and now 10months of having rsd and i am still in that walking boot because i cant put my foot in a shoe it is upsetting. to everyone who reads this i just want to say to all of you.... you are very inspiring, there are days when i hurt so bad and i think i cant do this anymore what did i do wrong and i want to give up but knowing all of you are going through the same thing and you keep going with a positive attitude, just know for me you all give me strength thank you

I'd like to thank YOU, ALL, for your kindness, acceptance And your words of wisdom.
We're all a little bit different, but share a common enemy.

So, while I think I may have given a bit of a wrong impression about myself, while I KNOW these things, it doesn't necessarily follow, that I DO these things.

Sometimes, xxxx happens!
And, yes, like Debbie said, the triangle becomes misshapen.
Sometimes, so badly it's like a bouncing ball!

The weather, the next phone call, (the last phone call), what's gonna happen? And, on and on.
I find that my faith in God comforts me.
I know that I'm weak, in a society of sharks who devour weaklings.

Sometimes the weather kicks our tails. Sometimes, it's our emotions, our worry of this, or that.

I have just learned these things along the way, and most of all,
It's great to have a place like this to come to! And, have friends like you, all around,
who "GET IT"!

I have many friends, who don't know much of my "condition", just know I have one.

So there, I just stop in, to see what condition my condition was in.....


Keep the good "Management" ideas, debacles and what works and what doesn't coming in.
This is a wonderful place!
I thank You All!

Peace and Love,
Pete
ASB

Thank You Pete
 

You're a sweetie-Pete!!!
Thanks for sharing and know you are appreciated here.
:grouphug:

Dew

OK...Philly group. Do you all remember Jerry Blavat? when he was wild? Loved his for lovers only album. Really need to find it again. Remember fire house dances. Such fun

Hugs
mary
:grouphug:


I grew up in the Philly area, too (the South Jersey side). No wonder you are so cool! I still have family that lives in parts of southeast Pa., Delaware, and South Jersey. My parents retired to a little beach town on the Jersey shore, but spend the winter months in Fla. I miss Philly very much and can always hear that special "twang" in someone's speech, even 25 years after moving away!

You are so right. Thank you for your input. It can be very hard to stay focused, when every day brings a new set of challenges. I am missing the phych part from my triangle, and I think it is badly needed. Its been about ten months since my ortho diagnosed "probable" RSD, and four or five since it started to spread. The issues are never ending - WC denials, a lazy RI PM doc that screwed up, good Boston PM docs that deserve to be paid that haven't been because of evil WC adjusters, personal insurance that is junk (just when you think you've got a back-up you find out that United Health is a terrible plan and pays doctors NOTHING) a head that hurts a LOT, feet that are starting to not work well, etc. And spring just doesn't want to arrive here in this corner of the US.

Sorry - didn't mean to go off on such a rant. You are an awesome inspiration! I'm often a wreck and I haven't been sick that long. I don't know if I am going to be able to keep it all together as well as you. But I plan to try. I have so many responsibilities - kids, a job, a wonderful husband, a yard, etc. THAT is what prevents me from curling up in a ball under the covers with my head buried under a pillow every day!! Well, that and college tuition bills right around the corner....I NEED to keep moving.

Take care, Sandy[/QUOTE]

ITA.

I somehow don't handle stress well anymore, it kind of triggers everything that's bad about my RSD and enhances it multiple times. I don't cope as well, is what I'm trying to say.

The stress can be all sorts, a weather change, a letter in the mail that freakes me out, a phone call, people saying the wrong things to me. It sends my heart in overdrive and I sort of panic.

Whether or not that is because of late stage RSD, I don't know. I do know that I never used to react to stress like that. I was like a stress fortress. Really bad things (not just a letter or a call) never freaked me out before. I was a rock. I don't know where it comes from, it's so atypical for me. And a letter or a phone call, I think to myself, who freakes out over that, well I do.

Sometimes I handle things just a little bit better, but... It's really strange to me, this kind of reaction. And still, I have it.

Anyone recognize this?

Most days, I can't stand to handle anything more than the RSD pain (and even that is hard)!

Hi Pete (aka ain'tsobad),

You have a wonderful atitude, but in my case the pain was really bad beyond any medical charts. I have gone into remission from RSD/TOS, no more pain. I see myself in recovery, I have some mild neuro. SX, but I really look at it like I will be cured.

Hugs, Roz

Technically you can't be cured, as there is no cure for RSD. There are only treatment methods that either do something for you or don't, and in most cases there are lasting effects or there is lasting damage (like a limp, a serious handicap, limited ROM, etc...). It's like saying an MS patient, an aids or cancer patient is "cured". "In remission" is a far better way of putting it with a condition as bad and as poorly understood as this.

Dear Marleen,

I 100% believe I will be cured. Hugs, Roz

That's a nice attitude to have, fighting is a good thing, but it's also nice to take the facts into account.

Hi,

It's a fact you can be cured from M/S, Cancer and RSD.

I have been cured of Cancer when I was a young adult.

Hugs, Roz

Hi CRPSbe,

What's your thought's on this? You are right, but the way I believe is right as well.

http://thelivingmatrixmovie.com/trailer

[QUOTE=lostmary;496597]OK...Philly group. Do you all remember Jerry Blavat? when he was wild? Loved his for lovers only album. Really need to find it again. Remember fire house dances. Such fun

Hugs
mary
:grouphug:


My Mom and Dad will - I was born in 1960, so during his hot days on the radio I was still pretty young....

That's the first time I've heard it phrased that way. Odd.

I had RSD for seven years before I was diagnosed, and I was diagnosed last November! Hear this: there will always be lazy doctors out there, no matter the advances made in medicine.

Hi Their,

I want you to know I 100% believe you. Doctor's make money weather they do anything or not. When I am talking about doing nothing, I mean just treating the SX. for us.

It's not just their fault, they have to follow a ABCD order, or they will loose their license. They also have to deal with insurance companies that do not want to pay them.

My the grace of God I am out of pain. My treatments for the last 7 years out of pocket, have been at least 300 hundred thousand.

Hang in their, Much Love, Roz xoxo

Hi Their,

You have got to understand I care about each and every person with RSD. but MD's are not lazy, they really aren't. Their are 3 different type's of medicine Biological, Holistic and Conventional. I have done them all.

The pain I was in was way beyond horrid, my DX is type 2.

I have had a PPO with a secondary the last few years. They have paid for maybe half of my care.
Hugs, Roz

On this note, I am talking about Conventional Medicine.

Hello all,
I've had a fairly busy, productive day today. Around lunchtime, I started in with a migraine. It took two pills today, it is still hanging around. Towards dinnertime (which I haven't had yet), I started to get some breakthrough pain. I realized I had "slipped up" on my meds. OK, fair enough, it was a frustrating (Mental stress) day, on the phone with lawyers, etc. and getting nowhere--maybe tomorrow, since I have a court deadline Monday. I laid down for a bit, and dozed off, missing a very important call! Aghhh!

I've been missing out on the "Exercise" corner of the triangle as well. The triangle is becoming the "straight line", to heck.

What I'm saying, is with Physical, Weather, Emotional Stressors, (Life in general), and a slip up on medication, even the most seasoned of us can get thrown "off course".

Roz, "Buckwheat", I have a question for you, I see you started another thread.
I'll post it over there.

Thanks,
and Take Good Care!

Pete
ASB

Sorry Roz, I don't buy the BS about a doctor not "being at fault" for the fact that my RSD has spread to my neck and head. I can't even sleep half the time because it hurts too much to lay on my head. The jerk injected me all over with steroids when I was sent to him with probable RSD. What the hell does that have to do with following an ABCD order or dealing with an insurance company that doesn't want to pay? All he had to do was refer me to another doc if he didn't want to look up the right and wrong way to treat RSD. I think this kind of thing probably happens all too often too way too many of us. The damage is done to me, and the RSD has now spread to my hands and feet.

*edit*

Dear Sandy,

If I have upset you in anyway I am sorry. I am out of pain, I am still dealing with some Neuro. SX. ( not pain) I believe in time, I will get well from them as well.

I suffered for many years. I am beyond thankful, I am out of pain.

I only came back to help people, I believe the more given, the more is required. I will just stick to my PM's from now on.


Hugs, Roz

i too cannot completely absolve doctors from their part in my late diagnosis. i'm just lucky i didn't allow them to damage me even further. one doctor wanted to fuse the bones in my feet because he thought what i was dealing with was "stretchy tendons" causing internal swelling. we all know how well RSD reacts to unnecessary surgery. another doctor asked me to immobilize the foot and go non-weight-bearing for six weeks "just to see" if it would help. right. because MORE atrophy is going to make my condition a lot better. doctors aren't omniscient, but they should accept it and pass a patient on when they don't know what to do next.
I have a score of horror stories, but i think this one best highlights the capital-L LAZINESS of some docs:
the first doctor i saw when my foot started hurting, seven years before i would finally get a name for the pain, sat me down in his office and asked me to take my shoe off. JUST my shoe, my sock remained on. he looked at my sock-covered foot for a moment and said "it looks fine to me." i kid you not. i was 18 and dealing with my first solo doctor's appointment (my mother had always insisted on coming with, but i was at college at this point), and i didn't know any better than to leave his office without pressing him further.

also, buckwheat: are two people posting under your screen name? your back to back responses to me seem to be at odds with each other.

I totally agree that some drs are lazy. Not saying all, just some.

If they don't know what they are doing and can't be bothered to do a bit of reading to help you - then they need to say so and refers you to another dr.
Instead of just stringing you along and collecting the payments.

I think many with usual conditions have this problem of finding a really good dr.
That is one really good thing about the internet at least we can find some info on our own and talk with others going thru similar problems.

I had orthopedic doctors ever since I got injured in the car crash. They know zilch about RSD! I had to find out the hard way!

They did see that the cartilage behind both knee caps was damaged (had gone soft), but they didn't pick up on the RSD, so it went undiagnosed for years. As I went from one orthopedist to another, the second one again ignored the discolorations and at about 1,5 years into the RSD my right leg was put into a full cast for weeks, then afterwards almost immediately (without the muscle gaining enough strength), that right knee was operated on. The cartilage diagnosis was confirmed again for both knees. I had nerve damage after the operation (but it took us some time to find that out). The knee joint itself felt better afterwards (cleaned, inside was filthy, and I had holes in the cartilage) but when I woke from surgery and they put me on my feet, my right leg went black, while the other leg had the typical RSD discolorations. They ordered me to bed rest immediately. The nurses were really worried. One nurse actually asked me if I still went to school. No. Why? Because this might take a long long long time. I asked him what he was on about, but he didn't want to tell me. I heard shouting in the hall from the head nurse to my orthopedist, saying that the doctor should have read his file! In the admission form I had written, after being ignored so many times, that my feet had turned blue by now. The orthopedist refused to show until the next day, even though I had asked several times he visit because of the odd reactions in both legs. I got 8 months of PT after that, which I couldn't handle well, and my muscles atrophied despite the PT. Another orthopedist got me off the PT straight away and prescribed one home exercise that I was supposed to do every day, throughout the day because I was too weak to handle full PT. He described every symptom I had and documented it, but he didn't give me any diagnosis and again it went undiagnosed for some time. A neurologist, who happened to pick up on the discolorations about 3 years into the RSD, thought it might be RSD. It was later confirmed. Then confirmed again by a rheumatologist and 2 pain specialists. By then it was far too late.

Doctors! Oh man dont get me started on this topic LOL.

I was once told that we do not know that much about our doctors....like was he/she at the top of their class??? We could be seeing the class dunce, but we will never know.

10 years ago a doctor told me he wanted to do an angiogram on me because of my family history with heart disease. I wish to this day that I would have said no to that one. He accidentally blocked the femoral artery, and now I suffer for the rest of my life.

Even worse is the part where the doctors learn how I was hurt....then drop me like a hot potato because they are afraid of lawsuits. Doctors are not the demigods they think they are. Most are only legends in their own minds :D

Too bad I was never able to sue....I picked the wrong state to get hurt bu a doctor in.

Yeppers Allen, not really a joke...

But what do you call the med student who graduated last in class?

Dr.

:(

Dear Allen,

My WC attorney works in a large firm that also does malpractice. Accordingly to them I don't have a case against the PM doctor who screwed me up so badly. I did write a detailed letter to the orthopedist who referred me to him, which made me feel a little bit better. And if it prevents the same thing from happening to someone else in the future then it was certainly worth the effort - RI is a very small state and maybe this guy will get the word out.

Sandy

Dear Folks,

In General MD's are not lazy. During Residency they work around the clock, for Mc Donalds wages.

Like I have mentioned before they have to fight the insurance companies for treatment for you.

Just because someone is a MD doesn't mean they have the answers to alot of things. Do you think alot of them know why you have RSD in the first place?

Yes, my treatments are and have been very expensive.

It's much cheaper for them to give a person disability or whatever else.

I do not judge anyone of you that has to do what you have to do. Just because your walk is a little different than mine, doesn't mean I am any better.

I used to make very good money, and had alot behind me. My husband is very ambitious, believe it or not I wished he wasn't so much.

Hang in Their, Roz

Maybe lazy is the wrong word that was used.

But I think the main complaint by many patients with oddball conditions...
is that if a Dr doesn't know or care to learn about a condition to be able to really help a person then they should just say so.

I mean if we can find a lot of the general info about our symptoms -- and maybe get close to figuring it out - why can't they?

If they aren't interested send us on our way or give a a referral to someone that might be of help..

Certainly MDs should have much better resources that us regular folks...I would hope anyway.

This is just my own opinion.

Dear Jo*mar,

With RSD the worst SX is horrid pain, so you are referred to Pain Mgt.

Pain Mgt MD's are not even allowed to DX, believe it or not. It's not their field.

cont...

A lot us get frustrated
 

In my opinion lazy isn't really what is happening. Take a minuet and look at how we feel after a disappointing doctor visit. For me it is frustrating and I get angry and emotional (when I get to the car) Now look at it through the eyes of a doctor. Who went into the medical field to help people. He/She is faced with RSD/CRPS It is so complex there is no cure. They get frustrated because sometimes they can't help. For each of us our treatment plans are different.
IMO a good doctor will tell you he has no knowledge and everything he wants to try will be trial and error (that's the way it was for me before we found what works). If your injury is WC related that makes it more difficult for a doctor add in insurance restrictions and it just componds things.
In my quest to put my medical team together I ran into doctors who I knew weren't able to handle such a complex condition. There were the pain doctors who just wanted to write prescriptions and cover up the problem with meds. I chose not to go this way I want to be a part of life not just watch it pass. Some doctors are too busy to handle a patient that is going to take a lot of time. When my family doctor dx me with RSD. He gave me a never give up speach. A couple months later he was so frustrated that he couldn't get his part of the medications to work with the Pain Doc. med. He came in the room and said we are done I need to find a different doctor. I went home and wrote him a letter and opened with you told me not to quit when you dx me and you can't quit on me. He called me we talked it out and 9 years later he is still on my medical team. Two years into seeing my pain doctor the same thing happened he got frustrated because we were having trouble getting my meds to work together. He got angry and said next time be sure you get a 30 minuet appt. when you come in. He ended up apologizing and 5 years later he is still my doctor. My chiropractor has been with me through this whole 9 year journey. Before I got to where I am today (I control my RSD it doesn't control me) I was in his office and I was miserable and crying. I was his next to the last patient. He was tiered and I was in pain. We got into a discussion about managing my RSD that ended up being an argument. We were both shouting at each other. I knew the staff and other patient could hear us. I was frustrated he was frustrated because he couldn't help more with my pain. We ended up apologizing to each other and did it loud enough so everyone else could hear.

After the first 5 or my 17 different doctors. I started interviewing them to see if they could help. I would ask about their knowledge of RSD/CRPS and I would ask if they wanted to invest the time it was going to take to find a treatment plan that would work. We have to be control of our care. Respect a doctor who says he can't help and ask for a referral.

Finally, my point. As frustrating as it is for us it is just as frustrating for the people who have made it a career to help people. Doctors are human and when they are faced with RSD/CRPS they are intimidated, frustrated, and even emotional. When I came back to OH from a treatment in Philly one of my doctors left the room to cry because the treatment didn't work.
Sorry, for rambling.
God bless you all,
Sherrie