NeuroTalk Support Groups - RSD/CRPS is "Managed", not cured.

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD/CRPS is "Managed", not cured. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/84205-rsd-crps-managed-cured.html)

Quote:

Originally Posted by Jo*mar (Post 499846)

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,

I was given no hope at all by to many to know. I was told I was disabled and that I needed to accept it. I had some MD's research for me, but still could't help. :(

My reply was I needed my life back and to ever problem their is a solution. Alot of MD's I saw really cared, but they just didn't know what to do with me. I heard I am really sorry alot, they didn't know.

No matter what insuranse I had I never ever had any problem, getting referred out. Neither should anyone else as well with RSD.

With me nothing seemed to help, instead of any treatment helping I just got worse for several years. Never ever had a problem getting tested at any labs or nothing. But were they all accurate no.

With me, my immune system played a huge role. Hugs, Roz

Check your PM as well

rsd/crps is managed, not cured

Hi Pete,
I couldn't agree with you more on most of what you said. I have been "jumping" through so many hoops--even though I'm unable to do that at all. I can't even stand. It took me 7 years to get correctly diagnosed with this disease. Mostly like you I was told that it was all in my head--even though you can't "imagine" this kind of pain that we go through on a daily basis. The rain makes it so much worse for me---I don't know if it effects you that way or not.
Ive changed primary doctors 6 times since this all began, most of them don't know what it is & when you tell them that you hurt--they "think" that you just want the drugs, so they ignore you until you just can't take it anymore so you switch doctors. I now have a really good primary but she is limited as to what she can do for me as far as meds go. She did get me a hosptial bed though---which is alot more comfortable than the recliner that I was in 7/24 for almost 2 years. I also home health come in twice a week to help me get a bath since I'm unable to do it on my own.
She filled out the forms for disability for me, she also filled out the forms for me to get a powered wheelchair.
I cant tell you how sick I am of having to repeat the same things to the pain doctor that Im seeing. The first time I saw him---he walks into the room & says to me " I can make 30,000 by implanting the spinal cord stimulator into your back"---there wasn't any small talk of---im doc so & so, how can I help you. Since then hes so insistent that I have this, but Ive been doing alot of research on it & from what Ive read---thats the last thing that you want to do for c.r.p.s. There are even doctors that dont believe in that thing---but he wont listen to me. I took in that neurology article that you talked about & he didnt want to hear anything that I have to say.
Im just so sick of having to "prove" to him that I hurt & that I dont want the in his words "the drugs" for the high I want them for the pain.
The doctor knows that there is no "cure" for this that the best a person can hope for is for it to be "managed" so I really don't know why he insists on doing that surgery on me, especially when its the last thing that I want. I begged the ortho that did the tkr to take my leg but all he would tell me is that a woman looks better if she has both her legs. I dont see why it matters if I have both my legs since Ive not been able to walk in over 2 years.
I read that same article as you did & that picture of the woman in the hospital looks just like me---when I saw that picture I thought that they took a picture of me when I was in having the tkr done.
All I want is for the pain to be managed as best it can be, that would be a great improvement over what it is now.
Its been along time since Ive posted here & I frankly forgot about this site until my hubby found it & was telling me about it. He has been so fantastic through all of this, he does everything for me that I need without even thinking about it. He is the best hubby that a woman could ask for. Ive read where alot of people loose their spouses through this & I cant even imagine how someone could not care about the pain that their loved one is going through.
Well I guess that Ive rambled on enough for now, but hope to hear from you or anyone else soon. I will try to keep more up to date on whats going on here.
Janet

Quote:

Originally Posted by AintSoBad (Post 495840)

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

Thanks for this "kick"

Hi, Pete: I appreciate your encouragement. I lost 60lbs about 10 years ago and kept it off for 7 years. Three years ago, I had a car accident with alot of soft tissue damage and then 1 year ago, broke my elbow which caused my RSD. I have been having pain in my hips and legs and have been put off from walking. I used to walk, do aerobics, bike, hike, etc. Needless to say, I have put the weight back on and am not looking forward to having to "shed" it again.

I think the same is true, not only of the body, of the brain. I have been battling rsd brain and am trying to read more and exercise my mind. I guess I need to push through the pain and make myself exercise my body too. I appreciate your "words of wisdom." I have only been battling this for 1 year and can't take any oral pain meds 'cause of allergies to them. Oh well, God is still good. Anywho, have a good one and thanks again. Suz66

:hug:

Quote:

Originally Posted by AintSoBad (Post 495840)

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.

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 - absolutely loved ur message! (so very sorry bout ur personal prob.) but ur such an inspiration! i've had this mess 4 only 17 mos. but i totally agree w/ur triangle of care...... i might even name the 3 parts:
MEDS
Your Group of Treating Physicians
Your Mind/Attitude

thks 2 all of u 4 all the nuggets of advice & SUPPORT! i will keep moving! and i agree - we ARE managers!

have a good wkend..... :hug:

Here's a thread that I haven't seen for a while, I was still a newby here!

Thanks for all your Thanks! :)

I want any and all to know, that if you can't do what I'm advising, Baby Steps!
(I can't do all that I'm advising, either!) (Some days, that tv remote is the first thing I look for! (Yea, I'm going for a walk in this driving rain) :eek:
But, maybe still do some wash, dishes, cleaning... just to move!
It's just what we should do.

But, as ya'll (yous) know, every week, something comes along, and knocks us off our schedule, if we ever had one! :(

So, if you can do this, that's great, if not, it's something to work towards, and don't feel discouraged, if you fall off the horse occasionally.

And, don't forget your prayers! :winky:

love to all, :hug:

pete

Pete,
You are truly awesome with your words of wisdom. Every time I post on this board I feel like I say the same thing. Your posts are dead on and I really am glad that they are. Everyone here is awesome, that's why I pray for all of you everyday.

Today, because of this board, I got uo off the couch and went shopping with my husband and it was a rainy miserable day. My leg was "talking" to me, but I wouldn't listen. I know it's going to be rough night tonight, but it was all worth it because I spent the day all alone with my sweetie and those are far and few between because of RSD, kids and basically life.

Every time I get my butt up and do something that I couldn't do a year ago, it's a victory. I know that by Tuesday, I will be down again, but maybe not. The power of positive thinking is ominous when it comes to the monster that we call RSD.:)

rsd/crps is managed not cured

Hi Pete,
I know that this has nothing to do with rsd or crps, but I was born in Pa but moved down south years ago. I couldnt take the cold weather anymore. :) I now live in Tn where it is alot warmer in the winter, but you would really get a laugh at how they react to snow down here. They literally close down everything for days---thats no joke. I couldnt believe it when I first got down here, they closed school in N.C. for 2 weeks for a light dusting but the radio was calling it a blizzard. I almost fell on the floor laughing.
Just wanted to share something that had nothing to do with pain. Hope you are doing good and that you had a good weekend. :) Hope to hear from you soon.
Janet

Quote:

Originally Posted by tiredofpain07 (Post 571561)

Janet,
Howdy!
A fellow Pennsylvanian! Now you live in Charlie Daniels country!
I wrote you a small book over on your thread.
I hope we can PM.

Be well,

Pete