Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-26-2010, 12:34 AM #1
tatertim tatertim is offline
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Question Question about RSD diagnosis

Hey you guys, I'm new to this crowd. I had my first visit with a pain specialist a few weeks ago. I was sent to him after a botched knee surgery and suffering a DVT from the surgery, which led to Post Thrpmbotic Syndrome. Upon examining me initially, he noticed hair loss , loss of feeling, and major atrophy in the affected foot and leg. He then told me he suspects RSD, and then schedued me for an nerve tes, an EMG I think, for this week.

Okay, so after reading up on RSD and that there is no test to diagnose it, and that the doctor can only diagnose it through physical examination/symptoms experienced, I can't help but wonder what the test this week is for. But primarily, I've been circling around one question in particular: If my doctor suspects RSD, does that more or less mean that I do in fact have it, more or less?

Thanks in advance.
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Old 07-26-2010, 03:33 AM #2
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They may be doing the test to exclude out any other possible cause, like a nerve entrapement or other nerve issue that the emg could detect.

You are correct that rsd is a clinical diagnosis, but it's usually only made when all other possible causes have been excluded, so that's likely why your doctor is ordering the test. There is currently no test that can show positivly that one has rsd.

If you do have something like a nerve entrapement then it's usually something that can be fixed with surgery so that would be a good thing. If it does turn out that rsd is your diagnosis, aggressive treatment is neccesary to try to put it into remission. The odds are the best when it's treated in the first 6 months to year of injury, and physical therapy and keeping moving even though it hurts is really important to avoid the permanent damage that can occur with rsd. It SUCKS! And it HURTS. You've got to learn how to push yourself, but not hurt yourself too much.

Someone told me life with rsd is like living on the edge of a sharp knife. You've got to balance yourself - do to little excersize and you'll hurt yourself, do too much and you'll hurt yourself, and everyones knife has a different blade. You've got to figure out how sharp your blade is and figure out how to balance on it . . . And your blade can change each day. It's tough, so you've got to be strong, but you will find that you are a much stronger person then you may have thought you were.

This place is a wonderful place to come for information and support, or a place to vent your frustrations, get advice, or just find some people who can understand what you're going through. It can really be an invauluable resource when you have a question or just need someone to talk to that knows what it's like to live with rsd.
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Old 07-26-2010, 06:51 AM #3
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Default hi

how is an emg done? I've heard that they stick you with needles and it is very painful. I need to get one as well...is this true?
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Old 07-26-2010, 07:10 AM #4
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Quote:
Originally Posted by buppy911 View Post
how is an emg done? I've heard that they stick you with needles and it is very painful. I need to get one as well...is this true?
Well, an EMG certainly isn't up there on my list of favorite things, that's for sure, but I've had worse too.

As my orthopedist is fond of telling me whenever I ask whether something is going to hurt, "What you're about to feel is nothing compared to all you've already been through!"

I think it partly depends on where you're having the EMG and what your injury is, to be honest. It's a good diagnostic tool though, especially if you're showing some deficiency, so they can track your long-term progress.

Here's hoping it's "just" an entrapment. Please keep us posted.
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Old 07-26-2010, 12:18 PM #5
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Default Hi,

I have had 4 EMG's before I realized they most likely will show nothing on them. They are very painful also. Mine were done to diagnose Thoracic Outlet and every idiotic Neurologist I had thought if it didn't show anything then there wasn't anything. I don't know what kind of Dr. you are seeing but I would hope he won't be like those I've seen. I will say too it can cause a worse flare for sure. The ones I had did. I finally said never again on EMG's.

Hopefully it will not be RSD that you are dealing with. If it turns out to be, learn all you can about it and pick and choose what treatments you will let a Dr. do. Pick and choose your Drs. too, no matter how many you have to see.

Welcome to the forum.

Ada
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Old 07-26-2010, 02:09 PM #6
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Since I probably have neuropathy now, an EMG would be a test for that. I discussed it with my PM doc at Clev Clinic last week. She said she never recommends them to anyone with RSD. And, she said it won't affect the outcome. Not like the would find a broken bone or something that can be fixed. EMGs just confirm diagnosis of some things. Maybe it's different if you have RSD from a cut nerve or something.
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Old 07-26-2010, 02:22 PM #7
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My wife (who has RSD) has had at least 2 EMG to check for trapped nerves. Why so many is beyond me. She dreaded the tests but she seemed to deal with it ok and said the last one wasn't too bad.

I have read of RSD cases where the patient had all or most of the signs of RSD and in one case in particular the patient was treated for RSD for several years, as I recall, until they found a trapped nerve. They removed or untrapped the nerve which cured all symptoms. This patient used to post on this RSD forum.
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Old 07-26-2010, 02:25 PM #8
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Thanks for all the replies, everyone! Holly, the problem with getting it into remission, if in fact I do have RSD, is that the injury happened over a year ago. So I guess I'll know more after tomorrow. Will let ya'll know what happens!

Quote:
Originally Posted by hollyk24 View Post
They may be doing the test to exclude out any other possible cause, like a nerve entrapement or other nerve issue that the emg could detect.

You are correct that rsd is a clinical diagnosis, but it's usually only made when all other possible causes have been excluded, so that's likely why your doctor is ordering the test. There is currently no test that can show positivly that one has rsd.

If you do have something like a nerve entrapement then it's usually something that can be fixed with surgery so that would be a good thing. If it does turn out that rsd is your diagnosis, aggressive treatment is neccesary to try to put it into remission. The odds are the best when it's treated in the first 6 months to year of injury, and physical therapy and keeping moving even though it hurts is really important to avoid the permanent damage that can occur with rsd. It SUCKS! And it HURTS. You've got to learn how to push yourself, but not hurt yourself too much.

Someone told me life with rsd is like living on the edge of a sharp knife. You've got to balance yourself - do to little excersize and you'll hurt yourself, do too much and you'll hurt yourself, and everyones knife has a different blade. You've got to figure out how sharp your blade is and figure out how to balance on it . . . And your blade can change each day. It's tough, so you've got to be strong, but you will find that you are a much stronger person then you may have thought you were.

This place is a wonderful place to come for information and support, or a place to vent your frustrations, get advice, or just find some people who can understand what you're going through. It can really be an invauluable resource when you have a question or just need someone to talk to that knows what it's like to live with rsd.
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Old 07-26-2010, 02:52 PM #9
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Quote:
Originally Posted by daylilyfan View Post
Since I probably have neuropathy now, an EMG would be a test for that. I discussed it with my PM doc at Clev Clinic last week. She said she never recommends them to anyone with RSD. And, she said it won't affect the outcome. Not like the would find a broken bone or something that can be fixed. EMGs just confirm diagnosis of some things. Maybe it's different if you have RSD from a cut nerve or something.
Hi there. The problem is that "small-fiber neuropathy," the hallmark of RSD/CRPS isn't picked up by an EEG/Nerve Conduction Study. See, The diagnostic criteria for small fibre neuropathy: from symptoms to neuropathology, Grazia Devigili, ValeriaTugnoli, Paola Penza et al, Brain (2008), 131, 1912-1925, FULL TEXT @ http://brain.oxfordjournals.org/cgi/...131/7/1912.pdf:
Abstract
Small fibre neuropathy (SFN), a condition dominated by neuropathic pain, is frequently encountered in clinical practise either as prevalent manifestation of more diffuse neuropathy or distinct nosologic entity. Aetiology of SFN includes pre-diabetes status and immune-mediated diseases, though it remains frequently unknown. Due to their physiologic characteristics, small nerve fibres cannot be investigated by routine electrophysiological tests, making the diagnosis particularly difficult. Quantitative sensory testing (QST) to assess the psychophysical thresholds for cold and warm sensations and skin biopsy with quantification of somatic intraepidermal nerve fibres (IENF) have been used to determine the damage to small nerve fibres. Nevertheless, the diagnostic criteria for SFN have not been defined yet and a 'gold standard' for clinical practise and research is not available. We screened 486 patients referred to our institutions and collected 124 patients with sensory neuropathy. Among them, we identified 67 patients with pure SFN using a new diagnostic 'gold standard', based on the presence of at least two abnormal results at clinical, QST and skin biopsy examination. The diagnosis of SFN was achieved by abnormal clinical and skin biopsy findings in 43.3% of patients, abnormal skin biopsy and QST findings in 37.3% of patients, abnormal clinical and QST findings in 11.9% of patients, whereas 7.5% patients had abnormal results at all the examinations. Skin biopsy showed a diagnostic efficiency of 88.4%, clinical examination of 54.6% and QST of 46.9%. Receiver operating characteristic curve analysis confirmed the significantly higher performance of skin biopsy comparing with QST. However, we found a significant inverse correlation between IENF density and both cold and warm thresholds at the leg. Clinical examination revealed pinprick and thermal hypoesthesia in about 50% patients, and signs of peripheral vascular autonomic dysfunction in about 70% of patients. Spontaneous pain dominated the clinical picture in most SFN patients. Neuropathic pain intensity was more severe in patients with SFN than in patients with large or mixed fibre neuropathy, but there was no significant correlation with IENF density. The aetiology of SFN was initially unknown in 41.8% of patients and at 2-year follow-up a potential cause could be determined in 25% of them. Over the same period, 13% of SFN patients showed the involvement of large nerve fibres, whereas in 45.6% of them the clinical picture did not change. Spontaneous remission of neuropathic pain occurred in 10.9% of SFN patients, while it worsened in 30.4% of them.

PMID: 18524793 [PubMed - indexed for MEDLINE] PMCID: PMC2442424
http://www.ncbi.nlm.nih.gov/pubmed/18524793

My neurologist has been mapping the areas in which, in response to a pin prick, I feel pressure but without any sense of sharpness. And quite surprisingly, even though the CRPS has by all appearances been centered in both my feet and ankles, I exhibit the same symmetrical response in all four extremities. There is little if any sense of sharpness "below" my knees and elbows, to the point that I looked down a few years back, and happened to see a hornet grinding its stinger into my wrist, but felt nothing!

And for the classic article tieing CRPS to small-fiber neuropathy, see, Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy), Oaklander AL, Rissmiller JG, Gelman LB, et al, Pain 2006;120:235-243, FULL TEXT @ http://www.rsds.org/2/library/articl..._pain_2006.pdf.

Mike
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Old 07-26-2010, 05:48 PM #10
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Default EMGs

I had 3 EMGs over a year and a half by 3 different Dr.s
2 showed no problem but right after the 2nd. one I had surgery on my right wrist only to find the radial nerve completely severed. 10 months after the 1st. nerve surgery I went to another hand Dr.s complaining about burning pain in my hand and that I could not be in any A/C buildings or vehicles. This is when I had the 3rd. EMG along with a ultra-sound. The EMG gave a false positived reading saying the nerve was in tact, the ultra-sound confirmed the radial nerve never grew and was still severed.
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