[shogan7RSD]

Hi every1!
I had carpal tunnel and cyst surgery on my right wrist in Dec '07. I got better for a little bit, but then 6 months down the road I started having pain again in my right wrist. I saw my surgeon and he immediately figured RSD, but sent me to a PM to get a diagnosis. The PM wouldn't give me a complete diagnosis but did 3 nerve blocks in my right arm and 1 in my left. In that time the pain spread up my right arm to my shoulder and started in my left arm till it got from my finger tips to my shoulder. No doctor will give me a comfired diagnosis bc i am missing some key symptoms (like burning pain, which has started recently in small amounts, excessive swelling, sweating and dryness). I know that people sometimes don't have all the symptoms, but my docs are treating me for RSD, and the blocks didn't help me for long, like maybe a day or two.
All my docs say it is good we caught it early, but what good can that do if i am not responding well to the treatments?

[Gymjunkie]

Originally Posted by shogan7RSD

Hi every1!
I had carpal tunnel and cyst surgery on my right wrist in Dec '07. I got better for a little bit, but then 6 months down the road I started having pain again in my right wrist. I saw my surgeon and he immediately figured RSD, but sent me to a PM to get a diagnosis. The PM wouldn't give me a complete diagnosis but did 3 nerve blocks in my right arm and 1 in my left. In that time the pain spread up my right arm to my shoulder and started in my left arm till it got from my finger tips to my shoulder. No doctor will give me a comfired diagnosis bc i am missing some key symptoms (like burning pain, which has started recently in small amounts, excessive swelling, sweating and dryness). I know that people sometimes don't have all the symptoms, but my docs are treating me for RSD, and the blocks didn't help me for long, like maybe a day or two.
All my docs say it is good we caught it early, but what good can that do if i am not responding well to the treatments?

Hi Shogan7RSD

There is a definitive set of diagnostic rules that have to be met in order for you to get a confirmed CRPS diagnosis requiring that you show a certain number/type of signs and symptoms. The diagnosis can only be reached oafter every other possibility has been ruled out based on testing, observation and and medical history.

There are other neuropathic pain conditions that can cause similar pain to that of CRPS which don't produce the same set of symptoms as CRPS - its a complex business indeed!

To be honest you are probably answering your own question - if early treatment interventions don't work and you don't respond then ultimately it is no real help to have caught it early. The only benefit is that the earlier it is identified and treatment interventions are started, it is generally thought that there is a greater chance that you might respond well.

Early and agressive treatment may mean that pain cycles and some of the reorganisation and sensitisation that is believed to happen in the nervous system, spinal column and brain can be managed before the pain levels become so chronic and severe that it is much harder to try and manage or control them. If you can get and keep a body part moving before it becomes immobile then there is a greater chance that it won't ever become immobile.

Nobody will ever know whether early intervention actually makes a difference for any given individual because you can't tell what would have happened if it had been different. Mine was regarded as a reasonably early diagnosis and I started early treatment at 6 months post the triggering surgery. However I have pain spread to all 4 limbs and can barely walk due to the movement problems I have from CRPS.

I was given a sympathetic block right away on diagnosis and it didn't work for me - like many people I got no therapeutic value from it at all - I was in agony before I even left the hospital. I have had aggressive drug intervention and the drugs were changed rapidly when the first ones weren't working - that has made a big difference to my pain levels. I have severe movement disorder symptoms as part of my CRPS (spasms, intermittent paralysis, tremor, weakness, jerking, uncontrollable movement, problems with voluntary movement) This affects my whole body virtually all of the time and absolutely nothing that has been tried has made any difference.

All you can do is push forward and try as many early interventions as you feel you can take. If you don't respond, at least you can then come to terms with your diagnosis and whatever symptoms you have to live with on the basis that you gave it your very best shot and that you had the best chance. I am well on in the "acceptance" process now, I am re-establishing a new life as a wheelchair user who has to deal with endless pain but at least I know that I have tried everything I could and given it my best.

[michelles]

i dont know if this is right or not but i was told that if a sympathic block works and it is done right then rsd is confirmed?

i had to do mri xray blood test to rule out any infections

also my foot dr did an alchol test he put alchol all over my foot and sat a minute and i told him my foot is really hurting now... thank you, and then it went ice cold and stayed that way.. rsd was confirmed

when i asked him why he was doing that he said it was another test to confirm rsd... for me i did have alot of symptoms my foot was blue, it hurt, and swollen, you could see sweat beading off my toes.

i would not sit back and wait for all the symptoms to appear and then start treatment if they think rsd then keep doing the blocks and go to pt, also for me i did a couple beir blocks and they workd really well and kept my pain undercontrol. ask you pm doc what is your options and do what you feel is best for you.

take care,michelle

[CRPSbe]

Originally Posted by shogan7RSD

All my docs say it is good we caught it early, but what good can that do if i am not responding well to the treatments?

Catching it early simply means that your chances are optimal. They might be able to stop it before you have (too much) function loss, or before it starts to spread. There are patients who get worse despite early diagnosis and early treatment because the treatment doesn't work well, but at least you had a better chance to begin with (and to those that were diagnosed late, that means an awful lot).

I would discuss other kinds of treatment with your doctor. The nerve blocks don't seem to do you much good, on the contrary!

[Millerprof]

I agree with Gymjunkie. There are lots of different treatment options. Try whatever you can, but give it time to see if it's having an effect (good or bad) before you throw in another therapy. For me, I had 8 nerve blocks and it's hard to tell if they were ultimately helpful or not (I don't know what would have become of me had I not had them). I think everything I've done in combination has helped incrementally. I was diagnosed within 6 weeks of surgery and treated. At first when the cast was removed and after the boot came off, I could barely move my ankle--it was in such pain (that is NOT where I had my surgery; surgery was in my foot). If I hadn't started PT right away then it would have probably gotten much worse, and my ankle would probably still be frozen now. I had almost all the classic signs of RSD (bone wasting, swelling, coldness, sweating, discoloration, etc.). I just didn't have the sensitivity to light touch; mine was more of a deep muscle and bone ache, and nerve sensitivity, and it spread up my leg pretty quickly. I consider myself in remission now; but this is after at least 18 months of trying LOTS of different therapies and doing a lot of hard work. I consider myself very lucky. I know for some it never gets better. For me it did.

[AintSoBad]

Sorry, I been asleep for about 3-4 days.
DOWN!

I've got this bastard 26 years, with TOS, and an acquired TBI a decade ago.

The "Problem" that I see going on with "catching it early",
is this:

The doctors all stand around playing Pocketball, because they're too afraid to do anything about it!
They won't get aggressive with their treatments!

If you catch it early, you need Aggressive PT!
And, that means WORKING THROUGH THE PAIN!
90% of humans, I don't think are willing to do that.
(I'm sorry to say that).

But,
If you get an Aggressive doctor, one who will give you
the painkillers you need, and a PT who will MAKE YOU WORK,
THEN,
(Maybe only then),
You might have a chance to beat this bastard,
in the first so many months, depending on how hard you're willing
to work "Satan" out of your body!
Get the medicinal help you need, and TELL Your doc and PT,
you WANT to be Aggresive!
Cure it? I think it may be Kick it's *****, early!

Give it to them in writing!
Like I always suggest, don't go to a docs appointment with nothing but "Your brain",
Write on your computer, a log, a digest, of how things are going.
and, finish it up with how you'd like to be treated!
Then, you save / print it, and hand it over.

Done.

Carry On.

You can still fight it outside of PT, if, you've got the (what it takes ).
FIGHT FIGHT FIGHT!

And then, there's no promise or guarantee.
Only hope.

That you won't have this Gorilla on your back, when, as you grow older,
you KNOW that other things will go wrong.
How's that gonna work?

I'm not being a bearer of bad news.
Just keepin' it real.

And, Just in case, this doesn't work to a cure....
It's the way you've got to deal with it almost every day.

I had such a week, last, that I just hadto rest, because I was up 23 hours/day!
Because I hadto be. I hadto fight!

I wish everyone well.

Pete
ASB

[SandyRI]

Originally Posted by AintSoBad

Sorry, I been asleep for about 3-4 days.
DOWN!

I've got this bastard 26 years, with TOS, and an acquired TBI a decade ago.

The "Problem" that I see going on with "catching it early",
is this:

The doctors all stand around playing Pocketball, because they're too afraid to do anything about it!
They won't get aggressive with their treatments!

If you catch it early, you need Aggressive PT!
And, that means WORKING THROUGH THE PAIN!
90% of humans, I don't think are willing to do that.
(I'm sorry to say that).

But,
If you get an Aggressive doctor, one who will give you
the painkillers you need, and a PT who will MAKE YOU WORK,
THEN,
(Maybe only then),
You might have a chance to beat this bastard,
in the first so many months, depending on how hard you're willing
to work "Satan" out of your body!
Get the medicinal help you need, and TELL Your doc and PT,
you WANT to be Aggresive!
Cure it? I think it may be Kick it's *****, early!

Give it to them in writing!
Like I always suggest, don't go to a docs appointment with nothing but "Your brain",
Write on your computer, a log, a digest, of how things are going.
and, finish it up with how you'd like to be treated!
Then, you save / print it, and hand it over.

Done.

Carry On.

You can still fight it outside of PT, if, you've got the (what it takes ).
FIGHT FIGHT FIGHT!

And then, there's no promise or guarantee.
Only hope.

That you won't have this Gorilla on your back, when, as you grow older,
you KNOW that other things will go wrong.
How's that gonna work?

I'm not being a bearer of bad news.
Just keepin' it real.

And, Just in case, this doesn't work to a cure....
It's the way you've got to deal with it almost every day.

I had such a week, last, that I just hadto rest, because I was up 23 hours/day!
Because I hadto be. I hadto fight!

I wish everyone well.

Pete
ASB

Pete -

Why do you call yourself "Ain't so bad" when all this stuff s*cks?

Like many others, my excrutiating pain doesn't occur when I use my affected extremity. That comes on after. And a lot of the time it's like a day or so after. Unfortunately, though, I also sometimes get really bad pain when I can't remember doing something strenuous (but my memory is not that great).

I've been cleaning my yard the last few weeks because I can't stand the mess and my plants are really special to me. There are a ton of oak trees on my property and the leaves are are all stuck in the shrubs and covering up my perennials, and there are lots of sticks on the ground. My head hurt so bad last week my PT couldn't even touch it, and I had trouble brushing my hair. I figure its because I've been doing the extra yard work. I also gave my dog a much needed bath and trim.

I wish I could conclude that I've gained something from the extra physical activity. I know I really enjoyed being outside and I get a lot of satisfaction from seeing my gardens look good. The pain is truly awful and might not be worth it, though.

Take care. Sandy

[shogan7RSD]

I just didn't have the sensitivity to light touch; mine was more of a deep muscle and bone ache, and nerve sensitivity, and it spread up my leg pretty quickly.

Hello everybody!
That is the type of pain i usually hav and sometimes burning pain.
The other day I was reading outside on my campus, it was a very nice day, and i went inside after about 10 mins and felt not only burning pain, but my right arm was really red and it had gotten really hot. This is the first time i noticed these symptoms.
My RSD spread up my right arm and to my left w/n 2 months of the docs suggesting i had RSD. The nerve blocks did give me complete pain relief for a few hrs but didn't last much longer. I got a second opinion and he started me on cervical ESIs that seemed to help more than the blocks (no complete relief but lasted much longer than the blocks).
I just turned 21 and just want to be rid of this. I will definitly tell my doc I want to be more aggressive tho. Hopefully w/ God's help, I can go into remission. My only problem w/ PT is how expensive it is. My mom is supporting me (yes, 21 and my mom has to take care of me. I think it's sad) and she is having so much trouble w/ all the doc bills piling up.
My boyfriend isn't very supportive, and I just don't know what to do w/ him. He wants me to work, even tho I am telling him "I can't!" He wants the best for me, he just doesn't seem to understand all that i am going thru and dealing w/. He is having such a tough time w/ this crap. Any thoughts on this?
I really appreciate every1's replies and hope to hear more! We are all together in this fight!

[GalenaFaolan]

Doctors don't seem to have gotten the message yet that rsd is a very individual disorder, it is progressive, it does spread and not everyone will have the same symptoms! You do not have to have touch sensitivity in order to definitely have rsd. I didn't! My only sensitivity was to air and even that for a few months was touch and go. I developed sensitivity to air about 3 years into it. The burning was not present for me at first either. I felt my first burn around 3-4 months into it. The most "common" symptoms of rsd are swelling(which isn't always there. I did have it bad in the beginning and after learning to walk again it disappeared and never returned.), pain out of proportion to the original injury, skin color and skin temperature change. The skin and hair/nail changes may or may not develop over time, as well as bone changes. My bone scans done at 5 months and 1 yr 5 months show my bones to be absolutely normal. I knew a guy in 2003 who had had rsd for 10 yrs then and every bone scan he had done came back normal. Just goes to show everyone and how their body deals with rsd is different.

Hugs,

Karen

[Grammadur]

My pain management physician says "it's a good thing we caught this thing early" at every visit. I want to throw up when she says it because I don't feel like it's a good thing. However, after reading the horror stories here, I am fortunate. For me there haven't been years of tests, multiple doctors, and failed therapies. Now I realize that's what she meant. The disease is the same it's just now I know what I'm up against. In 3 months it's spread from my right hand up my arm and my left hand is starting to show signs of the "mirror" thing.

My rsd came from a CESI gone awry so I've sworn off needles - no blocks in my future. So far Lyrica works but I'm going to try PT in an effort to lower the dosage.

I'm so sorry your boyfriend doesn't understand. However, he may come around so don't loose faith. Try looking on the website American RSDHope - they have some useful information about helping loved ones learn to cope.

As far as your mom goes... I have 4 daughters (about your age), and i'm confident that she'll do whatever she can for you no matter what your age. I know from working in a hospital (I'm a patient advocate) that if you mom has hospital bills, they will work with her. If she goes to the financial counselor and tells them her situation, they will work with her. Try not to feel guilty about her taking care of you. Your independence is right around the corner.
Sally