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RSD

Posted by Mar on 1/27/03 at 07:34 (106936)

What exactly is RSD? I thought it stood for Repetitive Stress Disorder which is what PF is. But it seems from the posts that it is something of its own? I supposedly have been dealing with PF for over a year, yet I never have that early morning pain that so many people describe. Mar

Re: RSD

nancy s. on 1/27/03 at 08:05 (106938)

mar, here is a definition of rsd as posted by brian a while back, from another website he visits. it's not a usual condition, but it does happen, and several people on this board (for example, tammie and laurie r) have it as a result of complications in their foot treatment/surgery. (you can also do a search of 'rsd' here from the message boards home page. many many posts about it, the more descriptive ones appearing a while ago.) of course, if any of the doctors here have anything to add, i'm sure they will!
nancy

Reflex Sympathetic Dystrophy Syndrome (RSDS)
Reflex sympathetic dystrophy is a severe and debilitating condition that occurs when the nerves in the leg 'go haywire.' The syndrome is at times known by different names, including Complex Regional Pain Syndrome.
The condition can develop following any small or insignificant traumatic injury such as a slip and fall. Of course other types of foot, ankle, or leg trauma or surgery can ignite this complication. The exact cause is still unknown.
Early and aggressive treatment (usually before the three-month period) can result in complete remission of the symptoms. However, if the diagnosis is not promptly made (i.e., within three months), or if it is not treated in a timely manner, then the reflex sympathetic dystrophy can become severe and debilitating to such a degree that stage III disease can evolve into permanent disability.
.

Re: RSD

Mar on 1/27/03 at 13:01 (107000)

Thanks Nancy. I had done a search before I posted but only found references to it but no description. I wonder what the symptoms are. Do you know? I will try to research a bit more. Mar

Re: RSD

wendyn on 1/27/03 at 17:40 (107044)

Mar - this is another post from a while ago from Janet

Reflex Sympathetic Dystrophy Syndrome (RSD) is poorly understood by patients, their families, and healthcare professionals. In some cases the condition is mild, in some it is moderate, and in others it is severe. We have compiled a list of some of the common misconceptions about this syndrome followed by the facts.
_______________________________________________________________________
Reflex Sympathetic Dystrophy Syndrome (RSD/CRPS) is rare.

FACT It is not a rare disorder and may affect millions of people in this country. This syndrome occurs after 1 to 2 % of various fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of prospective studies of Colles fracture. The diagnosis is often not made early and some of the very mild cases may resolve with no treatment and others may progress through the stages and become chronic, and often debilitating.
________________________________________________________________________
RSD/CRPS is a recently discovered disease.

FACT It was described during the Civil War and has been in the literature under a variety of names ever since.
________________________________________________________________________
The pain is not as bad as the patient says it is.

FACT The pain is often as bad as claimed and may be even worse.
________________________________________________________________________
RSD/CRPS following surgery means that the physician did something wrong.

FACT RSD/CRPS can occur following surgery as well as a trauma. This does not mean that the surgery was performed incorrectly.
________________________________________________________________________
Minor injuries cannot cause RSD/CRPS.

FACT Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. RSD/CRPS can start immediately after the injury or later. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred. In 10 to 26% of cases no precipitating factor can be found.
________________________________________________________________________
RSD/CRPS does not spread.

FACT The usual pattern of spread is up the same extremity and then may continue to spread on the same side of the body or to the opposite extremity. RSD/CRPS may spread to a distant site. According to the RSDSA database, the condition spreads in 70% of patients.
________________________________________________________________________
RSD/CRPS will burn itself out in 6 months.

FACT Many patients who are not treated early will experience spread of RSD and this may become a lifelong problem. Even with early treatment this may become a chronic condition.
________________________________________________________________________
Children do not get RSD/CRPS limb pain in children is psychological.

FACT RSD/CRPS can start as young as 3 years of age. This is not a psychological condition. Children may develop psychological problems when physicians, parents, teachers, and other children do not believe their complaints of pain.
________________________________________________________________________
After one or two treatment programs have not helped, there is nothing that can be done. The patient should be told to go home and learn to live with the pain.

FACT There are many forms of treatment for RSD/CRPS. Treatment may include medication, sympathetic nerve blocks, physical therapy, psychological support, and possibly sympathectomy, or dorsal column stimulator. The physician directing the care of the patient should have a treatment plan. In severe or long term cases, a Pain Clinic with a coordinated plan may be helpful.
________________________________________________________________________
Patients continue to complain because of secondary gains. They are looking for sympathy and are gaining satisfaction from this experience.

FACT As with any group of individuals there is a small percentage of RSD/CRPS patients who get satisfaction from a chronic illness. The vast majority of RSD/CRPS patients were active, productive individuals prior to this disease and do not enjoy the pain, the loss of independence, the loss of job or inability to attend school and the loss of income. The most devastating aspect of the illness is that physicians, other health care professionals, employers and especially friends and family members do not understand how much the patient is suffering. They are not looking for sympathy, only understanding.
________________________________________________________________________
Once RSD/CRPS is in remission, it does not come back.

FACT It may subside for years and then recur with a new injury. The reoccurrence should be treated immediately.
________________________________________________________________________
Vigorous and aggressive physical therapy is best.

FACT Physical therapy should be carried out only under a physician's supervision. Osteoporosis occurs with RSD/CRPS and as a result of bone loss, pathological fractures can be caused by overly aggressive therapy. In general, 'To hurt, is not to harm' as long as the patient is self mobilizing. Aquatic therapy at a comfortable water temperature can often facilitate mobilization of extremities, especially if RSD/CRPS is in the lower extremity. However, the cliché 'No pain, no gain' does not apply to RSD/CRPS patients.
________________________________________________________________________
The treatment for all RSD/CRPS patients should be the same.

FACT Each patient needs an individual treatment plan. What helps one patient, may not help another.
________________________________________________________________________
RSD/CRPS is not recognized as a reason for long-term disability or SSI payments.

FACT It is. The physician directing the patient's care should write a letter or report describing the severity of the condition.
________________________________________________________________________
Any physician can treat RSD/CRPS without outside help.

FACT RSD/CRPS is a complex condition with varying degrees of severity and disability. Patients should be cared for by a physician who knows how to treat RSD/CRPS. Often, a team approach (physician, physical therapist, anesthesiologist, mental health provider, and social worker) is most helpful.
________________________________________________________________________
There are no symptoms except pain, swelling, heat or coldness, and color change.

FACT There are many other symptoms including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine headaches, and others may be found as more data is accumulated.
________________________________________________________________________
Family and friends find this condition easy to understand.

FACT RSD/CRPS is difficult for many physicians to understand. It is not surprising that family and friends do not understand the patient's pain and disability.
________________________________________________________________________
Blocks and other treatments only work in the first stage of the disease.

FACT There are treatments that will help in any stage of RSD/CRPS. If RSD/CRPS spreads or if a new injury occurs, blocks may be effective again.
________________________________________________________________________
RSD/CRPS occurs in psychologically unbalanced people.

FACT Persons who get RSD/CRPS are not any different than the rest of the population psychologically. Once they get RSD/CRPS and they are in constant pain, with friends, family and employers not believing them, they may be depressed and suffer other psychological changes. When RSD/CRPS symptoms are relieved these changes disappear.
________________________________________________________________________
Every patient has the same results from a medication or treatment.

FACT There are many forms of treatment and combinations of treatment and medication. What is highly effective for one, may not work in another. Medication dosages may need to be adjusted to get the best results.
________________________________________________________________________
A patient who has no visible sign or positive tests does not have RSD/CRPS.

FACT RSD/CRPS is a clinical diagnosis. This means that the physician makes the diagnosis based on thorough history and physical examination. When seeing a new physician, it is a good idea to have a brief medical history with dates of various treatments and the response to them. Also include a brief summary of any hospitalizations and surgeries. It is helpful for the doctor to have a copy of this information before your appointment. Given the complexity of RSD/CRPS, it is helpful for the patient to keep their own set of relevant medical records.
________________________________________________________________________
There is no hope for patients who have had RSD/CRPS for a long time.

FACT The future of RSD/CRPS treatment is optomistic. Researchers worldwide investigate effective treatments and the cause of RSD/CRPS.
________________________________________________________________________
We hope all physicians will recognize and diagnose RSD/CRPS in the early stages so that the patient can be treated promptly and appropriately. Any physician unfamiliar with the treatment of RSD/CRPS should refer patients immediately to a physician or center that treats RSD/CRPS.

Message Number 89927

Re: RSD / WENDY and LAURIE, can you address this?

nancy s. on 1/27/03 at 18:31 (107052)

hi mar, i'm going to do another search on it tonight, because i know people with rsd have posted their symptoms in the past. i don't know if those posts will appear within the 200 now allowed by the search engine, however! what you described to me sounded like rsd symptoms, but i don't mean to alarm you -- only to suggest you have yourself checked out for it, especially since the earlier it's treated, the better.

in the subject line here i've asked wendy and laurie, both of whom know a lot about this, to post to you. i'll also email them to make sure they see this thread.

nancy
.

Re: RSD

nancy s. on 1/27/03 at 18:37 (107056)

thank you, wendy! i was just about to email you and now see that you answered mar before i did.

n.
.

Re: RSD

Mar on 1/27/03 at 19:48 (107067)

Thanks Nancy and Wendy. Now that I have the right letters RSDS, I am finding more info. I'm still waiting for the results of the nerve conduction test i had. My doctor will be in tomorrow, so maybe I'll find out then. Even though I have some of the symptoms of this from time to time, I don;t think I have this, but I could be wrong. If i do have it, I've probably had it longer than 3 months and then I;'m up the creek anyway!! Thanks for your help -- Mar

Re: RSD

nancy s. on 1/27/03 at 08:05 (106938)

mar, here is a definition of rsd as posted by brian a while back, from another website he visits. it's not a usual condition, but it does happen, and several people on this board (for example, tammie and laurie r) have it as a result of complications in their foot treatment/surgery. (you can also do a search of 'rsd' here from the message boards home page. many many posts about it, the more descriptive ones appearing a while ago.) of course, if any of the doctors here have anything to add, i'm sure they will!
nancy

Reflex Sympathetic Dystrophy Syndrome (RSDS)
Reflex sympathetic dystrophy is a severe and debilitating condition that occurs when the nerves in the leg 'go haywire.' The syndrome is at times known by different names, including Complex Regional Pain Syndrome.
The condition can develop following any small or insignificant traumatic injury such as a slip and fall. Of course other types of foot, ankle, or leg trauma or surgery can ignite this complication. The exact cause is still unknown.
Early and aggressive treatment (usually before the three-month period) can result in complete remission of the symptoms. However, if the diagnosis is not promptly made (i.e., within three months), or if it is not treated in a timely manner, then the reflex sympathetic dystrophy can become severe and debilitating to such a degree that stage III disease can evolve into permanent disability.
.

Re: RSD

Mar on 1/27/03 at 13:01 (107000)

Thanks Nancy. I had done a search before I posted but only found references to it but no description. I wonder what the symptoms are. Do you know? I will try to research a bit more. Mar

Re: RSD

wendyn on 1/27/03 at 17:40 (107044)

Mar - this is another post from a while ago from Janet

Reflex Sympathetic Dystrophy Syndrome (RSD) is poorly understood by patients, their families, and healthcare professionals. In some cases the condition is mild, in some it is moderate, and in others it is severe. We have compiled a list of some of the common misconceptions about this syndrome followed by the facts.
_______________________________________________________________________
Reflex Sympathetic Dystrophy Syndrome (RSD/CRPS) is rare.

FACT It is not a rare disorder and may affect millions of people in this country. This syndrome occurs after 1 to 2 % of various fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of prospective studies of Colles fracture. The diagnosis is often not made early and some of the very mild cases may resolve with no treatment and others may progress through the stages and become chronic, and often debilitating.
________________________________________________________________________
RSD/CRPS is a recently discovered disease.

FACT It was described during the Civil War and has been in the literature under a variety of names ever since.
________________________________________________________________________
The pain is not as bad as the patient says it is.

FACT The pain is often as bad as claimed and may be even worse.
________________________________________________________________________
RSD/CRPS following surgery means that the physician did something wrong.

FACT RSD/CRPS can occur following surgery as well as a trauma. This does not mean that the surgery was performed incorrectly.
________________________________________________________________________
Minor injuries cannot cause RSD/CRPS.

FACT Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. RSD/CRPS can start immediately after the injury or later. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred. In 10 to 26% of cases no precipitating factor can be found.
________________________________________________________________________
RSD/CRPS does not spread.

FACT The usual pattern of spread is up the same extremity and then may continue to spread on the same side of the body or to the opposite extremity. RSD/CRPS may spread to a distant site. According to the RSDSA database, the condition spreads in 70% of patients.
________________________________________________________________________
RSD/CRPS will burn itself out in 6 months.

FACT Many patients who are not treated early will experience spread of RSD and this may become a lifelong problem. Even with early treatment this may become a chronic condition.
________________________________________________________________________
Children do not get RSD/CRPS limb pain in children is psychological.

FACT RSD/CRPS can start as young as 3 years of age. This is not a psychological condition. Children may develop psychological problems when physicians, parents, teachers, and other children do not believe their complaints of pain.
________________________________________________________________________
After one or two treatment programs have not helped, there is nothing that can be done. The patient should be told to go home and learn to live with the pain.

FACT There are many forms of treatment for RSD/CRPS. Treatment may include medication, sympathetic nerve blocks, physical therapy, psychological support, and possibly sympathectomy, or dorsal column stimulator. The physician directing the care of the patient should have a treatment plan. In severe or long term cases, a Pain Clinic with a coordinated plan may be helpful.
________________________________________________________________________
Patients continue to complain because of secondary gains. They are looking for sympathy and are gaining satisfaction from this experience.

FACT As with any group of individuals there is a small percentage of RSD/CRPS patients who get satisfaction from a chronic illness. The vast majority of RSD/CRPS patients were active, productive individuals prior to this disease and do not enjoy the pain, the loss of independence, the loss of job or inability to attend school and the loss of income. The most devastating aspect of the illness is that physicians, other health care professionals, employers and especially friends and family members do not understand how much the patient is suffering. They are not looking for sympathy, only understanding.
________________________________________________________________________
Once RSD/CRPS is in remission, it does not come back.

FACT It may subside for years and then recur with a new injury. The reoccurrence should be treated immediately.
________________________________________________________________________
Vigorous and aggressive physical therapy is best.

FACT Physical therapy should be carried out only under a physician's supervision. Osteoporosis occurs with RSD/CRPS and as a result of bone loss, pathological fractures can be caused by overly aggressive therapy. In general, 'To hurt, is not to harm' as long as the patient is self mobilizing. Aquatic therapy at a comfortable water temperature can often facilitate mobilization of extremities, especially if RSD/CRPS is in the lower extremity. However, the cliché 'No pain, no gain' does not apply to RSD/CRPS patients.
________________________________________________________________________
The treatment for all RSD/CRPS patients should be the same.

FACT Each patient needs an individual treatment plan. What helps one patient, may not help another.
________________________________________________________________________
RSD/CRPS is not recognized as a reason for long-term disability or SSI payments.

FACT It is. The physician directing the patient's care should write a letter or report describing the severity of the condition.
________________________________________________________________________
Any physician can treat RSD/CRPS without outside help.

FACT RSD/CRPS is a complex condition with varying degrees of severity and disability. Patients should be cared for by a physician who knows how to treat RSD/CRPS. Often, a team approach (physician, physical therapist, anesthesiologist, mental health provider, and social worker) is most helpful.
________________________________________________________________________
There are no symptoms except pain, swelling, heat or coldness, and color change.

FACT There are many other symptoms including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine headaches, and others may be found as more data is accumulated.
________________________________________________________________________
Family and friends find this condition easy to understand.

FACT RSD/CRPS is difficult for many physicians to understand. It is not surprising that family and friends do not understand the patient's pain and disability.
________________________________________________________________________
Blocks and other treatments only work in the first stage of the disease.

FACT There are treatments that will help in any stage of RSD/CRPS. If RSD/CRPS spreads or if a new injury occurs, blocks may be effective again.
________________________________________________________________________
RSD/CRPS occurs in psychologically unbalanced people.

FACT Persons who get RSD/CRPS are not any different than the rest of the population psychologically. Once they get RSD/CRPS and they are in constant pain, with friends, family and employers not believing them, they may be depressed and suffer other psychological changes. When RSD/CRPS symptoms are relieved these changes disappear.
________________________________________________________________________
Every patient has the same results from a medication or treatment.

FACT There are many forms of treatment and combinations of treatment and medication. What is highly effective for one, may not work in another. Medication dosages may need to be adjusted to get the best results.
________________________________________________________________________
A patient who has no visible sign or positive tests does not have RSD/CRPS.

FACT RSD/CRPS is a clinical diagnosis. This means that the physician makes the diagnosis based on thorough history and physical examination. When seeing a new physician, it is a good idea to have a brief medical history with dates of various treatments and the response to them. Also include a brief summary of any hospitalizations and surgeries. It is helpful for the doctor to have a copy of this information before your appointment. Given the complexity of RSD/CRPS, it is helpful for the patient to keep their own set of relevant medical records.
________________________________________________________________________
There is no hope for patients who have had RSD/CRPS for a long time.

FACT The future of RSD/CRPS treatment is optomistic. Researchers worldwide investigate effective treatments and the cause of RSD/CRPS.
________________________________________________________________________
We hope all physicians will recognize and diagnose RSD/CRPS in the early stages so that the patient can be treated promptly and appropriately. Any physician unfamiliar with the treatment of RSD/CRPS should refer patients immediately to a physician or center that treats RSD/CRPS.

Message Number 89927

Re: RSD / WENDY and LAURIE, can you address this?

nancy s. on 1/27/03 at 18:31 (107052)

hi mar, i'm going to do another search on it tonight, because i know people with rsd have posted their symptoms in the past. i don't know if those posts will appear within the 200 now allowed by the search engine, however! what you described to me sounded like rsd symptoms, but i don't mean to alarm you -- only to suggest you have yourself checked out for it, especially since the earlier it's treated, the better.

in the subject line here i've asked wendy and laurie, both of whom know a lot about this, to post to you. i'll also email them to make sure they see this thread.

nancy
.

Re: RSD

nancy s. on 1/27/03 at 18:37 (107056)

thank you, wendy! i was just about to email you and now see that you answered mar before i did.

n.
.

Re: RSD

Mar on 1/27/03 at 19:48 (107067)

Thanks Nancy and Wendy. Now that I have the right letters RSDS, I am finding more info. I'm still waiting for the results of the nerve conduction test i had. My doctor will be in tomorrow, so maybe I'll find out then. Even though I have some of the symptoms of this from time to time, I don;t think I have this, but I could be wrong. If i do have it, I've probably had it longer than 3 months and then I;'m up the creek anyway!! Thanks for your help -- Mar

Re: RSD

Suzie on 2/13/03 at 08:15 (109004)

I am in remission from RSD but I can tell you what I know. Skin changes, nail changes , temperature changes my RSD foot was 10 degrees colder than my normal foot. Burning burning pain. I wanted to have my foot chopped off . While it is true that the earlier treatment is started the better I am still having sympathetic nerve blocks at 18 months, just completed a series of 4 in 10 days which worked for me . RSD can and does effect the whole body. Good Doctors that understand this are hard to find, if you suspect you may have RSD dont delay in getting treatment from a pain management Doctor. If I can help let me know.
Suzie