[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

[electdon]

Originally Posted by 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

3 phase bone scan is the best to determine rsd

[fmichael]

Originally Posted by electdon

3 phase bone scan is the best to determine rsd

Dear electdon -

Your statement is partially correct, as applied to the acute case of CRPS in the upper extremities, and even then the results are not infallible. See, e.g., Diagnosis of post-traumatic complex regional pain syndrome of the hand: current role of sympathetic skin response and three-phase bone scintigraphy, Pankaj A, Kotwal PP, Mittal R, Deepak KK, Bal CS, J Orthop Surg (Hong Kong). 2006 Dec;14(3):284-90, ONLINE TEXT @ http://www.rsds.org/2/library/articl...kaj_Kotwal.pdf

Department of Orthopedics, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India.

Abstract
PURPOSE: To evaluate the role of sympathetic skin response (SSR) and three-phase bone scintigraphy (TPBS) in the diagnosis of complex regional pain syndrome (CRPS).

METHODS: 60 patients with CRPS of the hand were recruited. TPBS was performed using a bolus injection of 20 mCi of Tc-99m methylene diphosphonate in an antecubital vein and blood flow (first phase) image, blood pool (second phase) image, and delayed (third phase) image obtained. Patients were considered to have CRPS when the blood pool and blood flow images showed diffuse asymmetric uptake, or when the delayed image indicated increased asymmetric periarticular uptake. SSR was measured simultaneously in the affected and unaffected hands. Standard surface electromyogram disc electrodes were applied to the palm and dorsum of both hands. Electrical stimuli were applied to the skin at the base of little and ring fingers of the unaffected hand. Patients were considered abnormal when response was absent or the peak-to-peak amplitude was <50% of the contralateral hand in at least 2 readings.

RESULTS: The delayed phase of TPBS tested positive in all; the first and second phases tested positive in 54 (90%) and 56 (93%) of the patients, respectively. Four of the 6 patients with a negative first phase had had symptoms persisting for more than 6 months, and the other 2 for about 3 to 6 months. No patient presenting within 3 months had a negative scan. SSR was absent in 16 (27%) patients and normal in 44 (73%). 11 (79%) of 14 patients who presented more than 6 months after symptom onset displayed an abnormal SSR, while only 10% of those presenting within 3 to 6 months and 11% of those presenting within 3 months had an abnormal SSR. 12 (75%) of the 16 patients with abnormal SSR had associated decreased sweating, compared with 2 (4.5%) of the 44 patients with a normal SSR.

CONCLUSION: TPBS is a very sensitive corroborative test to confirm the clinical suspicion of CRPS during the initial stages, but not in late cases. SSR can be used to document the sympathetic dysfunction in cases having an associated sweating abnormality and may have some diagnostic value in late cases of CRPS, when TPBS is less reliable.

PMID: 17200530 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17200530

However, when applied to the lower extremities, an altogether different picture emerges. See, generally, Increased soft-tissue blood flow in patients with reflex sympathetic dystrophy of the lower extremity revealed by power Doppler sonography, Nazarian LN, Schweitzer ME, Mandel S, Rawool NM, Parker L, Fisher AM, Feld RI, Needleman L, AJR Am J Roentgenol. 1998 Nov;171(5):1245-50 at 1248:

Bone scintigraphy is, however, only 60% sensitive for lower extremity reflex sympathetic dystrophy and is more likely to be positive in the later clinical stages. [Emphasis added.]

ONLINE TEXT @ http://www.ajronline.org/cgi/reprint/171/5/1245 and citing, Scintigraphic patterns of the reflex sympathetic dystrophy syndrome of the lower extremities, Intenzo C, Kim S, Millin J, Park C, Clin Nucl Med. 1989 Sep;14(9):657-61:

Division of Nuclear Medicine, Thomas Jefferson University Hospital, Philadelphia, Pennsylvania 19107.

Abstract
Thirty-two patients with clinical signs and symptoms of the reflex sympathetic dystrophy syndrome (RSDS) of the lower extremities underwent Tc-99m MDP bone scintigraphy. Twenty-three patients had abnormal scan findings consistent with RSDS, while the scans of the remaining nine patients were normal. Of the 23 patients with abnormal scans, 19 demonstrated increased periarticular activity on early and delayed images, while 4 patients demonstrated decreased activity in the affected limb.

PMID: 2791420 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/2791420

I, for one, with bi-lateral lower extremity CRPS was burned by false-negative 3-phase bones studies taken roughly 6 months after the onset of my CRPS. In fact, the only thing approaching a significant "test result" early on in the course of the disease was my subjective reporting of going into an almost 10 day remission following the administration of my second lumbar sympathetic block, which, in contrast to the first attempt a week earlier, was applied bi-laterally.

And speaking of blocks, the key in all of this is early intervention and treatment. In a fresh cash of CRPS it is often possible to knock it out with an aggressive series of sympathetic blocks. And specifically in the the arm or hand, a Stellate Ganglion Block, a procedure in which under fluoroscopy a large amount of a local anesthetic (with or without a supplemental steroid) is injected by a pain specialist or an interventional radiologist at the top of the back, approximately where the cervical and thoracic spines transition; and for children the procedure would almost certainly be done under mild sedation. But there, time is absolutely of the essence. See, Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, Ackerman WE, Zhang JM, South Med J. 2006; 99:1084-1088, ONLINE TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdf:

Abstract
INTRODUCTION: The purpose of this study was to examine the efficacy of stellate ganglion blockade (SGB) in patients with complex regional pain syndromes (CRPS I) of their hands.

METHODS: After IRB approval and patient informed consent, 25 subjects, with a clinical diagnosis of CRPS I of one hand as defined by the International Association for the Study of Pain (IASP) criteria, had three SGB's performed at weekly intervals. Laser Doppler fluxmetric hand perfusion studies were performed on the normal and CRPS I hands pre- and post-SGB therapy. No patient was included in this study if they used tobacco products or any medication or substance that could affect sympathetic function. The appropriate parametric and nonparametric data analyses were performed and a p value <0.05 was used to reject the null hypothesis.

RESULTS: Symptom onset of CRPS I until the initiation of SGB therapy ranged between 3 to 34 weeks. Following the SGB series, patient pain relief was as follows: group I, 10/25 (40%) had complete symptom relief; group II, 9/25 (36%) had partial relief and group III, 6/25 (24%) had no relief. The duration of symptoms until SGB therapy was: group I, 4.6 +/- 1.8 weeks, group II, 11.9 +/- 1.6 weeks and group III, 35.8 +/- 27 weeks. Compared with the normal control hand, the skin perfusion in the CRPS I affected hand was greater in group I and decreased in groups II and III.

DISCUSSION: The results of our study demonstrate that an inverse relationship exists between hand perfusion and the duration of symptoms of CRPS I. On the other hand, a positive correlation exists between SGB efficacy and how soon SGB therapy is initiated. A duration of symptoms greater than 16 weeks before the initial SGB and/or a decrease in skin perfusion of 22% between the normal and affected hands adversely affects the efficacy of SGB therapy. [Emphasis added.]

PMID: 17100029 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17100029

See, also, Complex regional pain syndrome type I: efficacy of stellate ganglion blockade, Istemi Yucel, Yavuz Demiraran, Kutay Ozturan, Erdem Degirmenci, J Orthopaed Traumatol (2009) 10:179–183, ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...Article_71.pdf

And the truth of the matter is that no single test can substitute for the clinitian's judgment. See, The incidence of complex regional pain syndrome: A population-based study, de Mos M, de Brijn AGJ, Huygen FJPM, Dieleman JP, Stricker BHC, Sturkenboom MCJM, Pain 2007;129:12-30, at 20:

Limitations in our study are related to the absence of a gold standard for the diagnosis of CRPS. As observed in the specialist letters, physicians focused on vaso- and sudomotor and motor-trophic signs, whereas the presence or absence of sensory and neurological symptoms was not frequently reported.

ONLINE TEXT @ http://www.rsds.org/2/library/articl..._pain_2006.pdf

And indeed, it is only the prompt exercise of informed judgment by an experienced clinitian that can make seeming magic like this possible: A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Medicine 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

Mike

[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!