RSD Opinion????

sflohaug · Feb 26, 2005

Hi,

I am new to the field of Worker's comp. case management and wondered what RSD is? If you have any tips or resources that can enhance my learning of WC, I would be very grateful!

Thank you,

Sharon in CA

FutureNrse · Feb 26, 2005

Strange, my old doctor tried to diagnose me with RSD and I was work comp auto accident. If I'm not mistaken, it stands for Reflex Sympathetic Dystrophy. It was a long time ago that I researched it, but my first thought was that it was a "disease of the day" kind of thing. To some extent the symptoms could fit anyone. Making it hard to disprove, which is probably the appeal of it for work comp doctors.

When I finally found a good doctor, he told me to go home, look up the meaning of "dystrophy" and then try to see if I could apply it myself in any way. Naturally, I couldn't. I was rather furious that I had spent months being treated with Neurontin, which made me sick, for a disease that I didn't have. Furthermore, I founf info online stating that Neurontin hasn't beeen proven safe or effective for treating RSD.

I don't have a lot of faith in diseases or disorders that are vague and hard to prove or disprove. They seem made-up, just an excuse for billing insurance, prescribing meds, and getting money from work comp.

tsmith1 · Feb 27, 2005

Workers' Comp is very different from state to state. The comp board in your state should have some imformation. Talking to claims adjustors is also a great way to learn.

RSD stand for Reflex Sympathetic Dystrophy. It is also know at CRPS or Complex Regional Pain Syndrome. It is a disorder of very vague symptoms such as mottling of the skin. temperature changes from one extremity to the other. shiny skin, exterme sensitivity to anything touching the area, just to name a few. People with this disorder almost always have a psych component but the patient may not have actually been diagnosed with any psych issues. The disorder always results from a very minor injury and there are NO definative diagnostic tests to diagnosis this. In fact most tests are negative when the diagnosis of RSD is given. The 2 main test are EMG and bone scan. The EMG will be negative with RSD but the bone scan usually shows uptake in the affected area, but a negative bone scan does not rule out RSD.

Some people have gone as far as having limbs amputated to stop the pain but this is not the common case. Usual treatment is Neutontin and extensive physical therapy to make sure the patient doesn't stop moving the extermity.

RSD does usually manifest itself only in the limbs but there have been some cases of doctos diagnosing the disorder in the back. There has also been some cases where patients say it moves from one limb to another. My personal opinion is that this is part of the psych component.

There are some treatments out there involving lidocaine drips that involve daily trips to the hospital or actual hospitalization and run about $30,000. This disease can keep cases open for years longer then they should be and almost always carries a total disability with it. Sometimes leads to a permanancy.

I hope this helps.

Hi,
I am new to the field of Worker's comp. case management and wondered what RSD is? If you have any tips or resources that can enhance my learning of WC, I would be very grateful!
Thank you,
Sharon in CA

tsmith1 · Feb 27, 2005

This is my suspicion as well and what does that say about the thousand of physicians giving this diagnosis. It hinders treatment from those that actually do have this disorder (I have actually seen about 3) due to raised suspicions from every case manager that sees this diagnosis.

Unfortunately due to its vagueness and difficulty to rule in or rule out we are at the mercy of the IME doctors to get us out of paying for years of treatment due to wrongful diagnosis.

[TQUOTE=FutureNrse]Strange, my old doctor tried to diagnose me with RSD and I was work comp auto accident. If I'm not mistaken, it stands for Reflex Sympathetic Dystrophy. It was a long time ago that I researched it, but my first thought was that it was a "disease of the day" kind of thing. To some extent the symptoms could fit anyone. Making it hard to disprove, which is probably the appeal of it for work comp doctors.

When I finally found a good doctor, he told me to go home, look up the meaning of "dystrophy" and then try to see if I could apply it myself in any way. Naturally, I couldn't. I was rather furious that I had spent months being treated with Neurontin, which made me sick, for a disease that I didn't have. Furthermore, I founf info online stating that Neurontin hasn't beeen proven safe or effective for treating RSD.

I don't have a lot of faith in diseases or disorders that are vague and hard to prove or disprove. They seem made-up, just an excuse for billing insurance, prescribing meds, and getting money from work comp.

alintanurse · Feb 27, 2005

Thanks for the info--I haven't dealt with this dx yet,but I'm fairly new to workers comp. too!

Loving Life · Feb 28, 2005

I know of a nurse who developed this after injuring her shoulder from a patient. She lost a year from her life because of being heavily medicated, etc. My sister, who has Andersen's Syndrome that entails temporary hypokalemic paralysis with prolonged QT - has a defibrilator (?sp) and pacemaker, developed rsd after a botched carpal tunnel surgery. She is in a life of hell. She was a radiology tech and lost her job because her hand/arm is useless. It is shriveled, mottly, cold and she cannot tolerate anything touching her hand, etc. She has had an epidural in her neck, they almost OD'd her on meds. Because of her pacemaker and defib. she cannot due some of the other remedies. Yes there is a psych component, because of the lack of medical doctors that take this seriously and lack of compassion. I could go on and on. She is very interested in speaking with people regarding this. She wants to tell her story. We live in Grand Rapids MI, and she has had to go to Cleveland Clinic for treatment and even they have failed her to a certain point. Her story is a nightmare. And she does talk to psych that is involved with the pain clinic. If you heard her whole story, you would be appalled. If anyone is interested pleae pm me. Thanks

Traveler · May 20, 2006

This is one that means a great deal to me. My daughter had several sore throats on and off until Feb.11 of this year when her voice was gone and the pain was severe. The doctor noticed a goiter to she had u/s that showed the r lobe was larger. All other thyroid tests normal. Then we went to an endocrin. who said it wasn't her thryroid. This whole time the pain is spreading to encompass her whole neck and she's losing weight because it is too painful to eat. ENT admits her to Children's Hosp and does laryngoscope after which I am told "she has selective mutism. She could talk if she wanted to" They kept her 8 more days and when the MRI and labs showed clean we were out the door. Problem was, she was literally in a ball on the floor screaming in pain. Sometimes she would get a rash there and sometimes not. We packed her back in the car for the five hour dirve (hell for her) to a large teaching hospital. Almost upon presentation they said RSD. Normally it's in the arms or legs, but hers was in the neck. She ended up having to be on a feeding tube for her weight loss, they worked on her endurance and then lots of PT, but the pain still hasn't gone away. We are in the process of investigating many other options. My sweet little girl became a monster. She said she was going to kill herself. The psych people were interested until I told them that if I was in her position I would be the same way. They told her she wasn't talking because she didn't want to (further labs showed her muscles were locked and could not move until voice/speech worked with her.)Nobody took her pain seriously and when they did, no medication could treat it. She was in hospitals for 48 days- who wouldn't be a little unbalanced? RSD is real and it is devestating for the patient and the family.

lossforimagination · Apr 5, 2007

I worked on a unit that had pain management patients and RSD clients getting TENS units. They was definately a psych component; the patients were obsessed with their pain. I remember one patient's arm was atrophied and she guarded it from anything and everything. The slightest movement and she would hold it and cry. She was terrified of anything that would cause an increase in pain. The pain doc said it was a chronic problem resulting from a type of nerve damage brought on by a crushing injury; it could actually even initally have been a minor injury as the precipitating event.

morte, LPN, LVN · Apr 5, 2007

before you "jump" on "its psych" wagon, remember when Crohn's was considered psych and autism was considered psych

Traveler · Apr 18, 2007

Also be very careful before you assign these patients as having "psych components" to their conditions. If you had pain so severe that even a gentle breeze blowing could send you into screams of agony yet many people dismissed your pain and no medication could control it- don't you think you would develop issues? I certainly would.

SheilaK · Jan 20, 2012

I was a RN for about 17 years before on injury to my right knee during a code put me off work. Due to delayed medical (waiting on workers comp to approve testing & surgery) it took 9 weeks before an MRI was done and 6 months before surgery, the entire time my right knee was swollen to 3 times it's normal size. I developed RSD/CRPS 2 months after the injury. The pain is unbelievable. I now, almost 6 yrs later, have full body RSD, have major mobility problems and the RSD is now affecting the autonomic parasympathetic nervous system. When my blood pressure rises about 120/80 my heart rate drops into the 20's and 30's and if my heart rate goes above 110 my blood pressure bottoms out. During my last hospital stay Nov 2011 my BP dropped to 48/palp. I almost did not come home at all. RSD/CRPS is very real. Further complications of RSD that I have are short term memory loss, petti mal seizures, bone loss (last bone density was -3.9), in 2010 I have 2 blood clots in my left leg in separate veins, due to decreased circulation from the RSD that ran from my mid thigh to mid calf. I can no longer drive, I am unable to do even simple household chores and need assistance with getting in and out of the bathtub. I can no longer take showers - the water literally feels like I am having my skin sandblasted off. Personally I will never be able to work again and with the complications of the RSD affecting hr & bp, I most likely will not live to see my worker's comp case settled.

There are psych issues, the constant pain and the frustration of dealing with people who think it is "all in our heads" and statements like "you look perfectly normal so you can't be sick". RSD/CRPS patients have one of the highest suicide rates because of this.

Let me educate you a bit about RSD. The following information is straight from an informational brochure about RSD written in laymen's terms so anyone can understand.

- RSD/CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome may follow 5% of all nerve injuries.

- Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred.

- Early and accurate diagnosis and appropriate treatment are key to successful treatment, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.

- There is NO cure for RSD. There is a treatment being done in Germany which has an 80% remission rate, however this treatment has not been approved by the FDA for use in the United States.

- RSD/CRPS is two to three times more frequent in females than males.

- The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.

- RSD usually starts with an injury or surgery. Pain disproportionate to the injury is one symptom. Others are: excessive burning as if the skin is on fire, sensitivity to cold, excessive sweating, changes of temperature in the skin, changes of color in the skin from bluish to multi-colored blotches as if recent severe bruising took place, swelling, blotching, skin ulcers in later stages, rash to the point of disfigurement, extreme tenderness to touch, muscle spasms, blurring of vision, impairment of hearing.

- RSD/CRPS also causes Osteoporosis, loss of bone mass as well as decrease in circulation to the extremities which can lead to blood clots

- This is not a psychological syndrome, but people may develop psychological problems when physicians, family, friends, and co-workers do not believe their complaints of pain.

- Ice and exposure to cold can actually cause the RSD/CRPS to become worse.

- Treatments include medication, physical therapy, psychological support, sympathetic nerve blocks, and/or spinal cord stimulation.

- RSD/CRPS is the worst form of chronic pain known today. Unlike most forms of chronic pain it is a deteriorative condition, it gets worse

- RSD/CRPS pain is often describes as "burning like I had gasoline poured on me and someone put a match to it."

- Allodynia is common with RSD/CRPS. This is where the skin becomes so sensitive that a light breeze across the skin can cause severe pain.

- Insomnia is very common with RSD/CRPS

- Depression due to constant pain and loss of life-style is common and RSD/CRPS victims have one of the highest rates of suicide.

- RSD/CRPS can spread internally and adversely affect organs and the autonomic parasympathetic nervous system which regulates blood pressure and heart rate among other things.

The McGill Pain Scale, established in 1971, is often used to rate types of pain on a scale of severity. RSD/CRPD was previously known as Causalgia and it is under that name on the McGill Pain chart with a pain rating of 42. The amputation of a digit without anesthetic is rated at 41.

When interacting with someone with RSD/CRPS

- People with RSD/CRSP look just like normal people, they don't "look" sick.

- The pain is real and constantly present, even though it is invisible and may not be readily apparent by demeanor or activities.

- Please be very careful of the RSD/CRPS affected limb and ASK before touching.

- The affected limb, if at all possible, should not have blood pressures taken on it or have blood drawn from it

- Ice should never be used on a limb affected with RSD/CRPS

- RSD/CRPS is not contagious

- Sleep deprivation from insomnia caused by pain can adversely affect short term memory and attention span.

- Some days are good days and the person may be able to do more physically or be able to do things longer. Other days they may not be able to do the same activity they did the day before. An example of such activity could be driving to the store to pick up a few items or washing dishes.

I have two issues regarding RSD that I would like imput on:
1) Has anyone else noticed that the diagnosis is given in work comp injuries almost all the time but with motor vehicle the doctor's seem to go out of their way to rule this out? Why do you think this is?
2) I am also curious about opinions as to the validity of RSD as a diagnosis. Do you believe their truly is such a condition? How much of the condition is influenced by the psych component?