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