RSD(S)/CRPS Summary Description

Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional PainSyndrome (CRPS) Type I (here called RSD/CRPS), is a chronic condition characterized by burning pain and abnormalities in the sensory, motor andautonomic nervous systems. The syndrome typically appears after an acuteinjury to a joint or limb, though it may occur with no obvious precipitatingevent. In most cases, regardless of the site of injury the symptoms begin andremain most intense in the distal most extremity. In the initial stages of RSD/CRPS, pain and swelling from the injury do not subside but actuallyintensify, spreading from the site of the injury to other parts of the limb, to thecontralateral limb or to remote regions of the body. The skin in affected areasand particularly deep somatic tissues are painfully sensitive to touch, often red and abnormally warm due to alterations in regional blood flow. Changesin sweating patterns, hair growth, subcutaneous tissues, muscles, joints orbones and difficulty moving the joint or limb are other hallmarks of thedisorder. In addition to the evidence of inflammation and abnormalautonomic nervous system function, there are changes in motor systemsincluding tremor, weakness and dystonia, which strongly suggest a centralnervous system component to the disease in a subgroup of patients. The syndrome may evolve through three stages (acute, dystrophic, atrophic), although this is very much debated, each marked by progressive pain andphysical changes in the skin, muscles, joints and bones. RSD/CRPS can affect both genders and all ages (including children). The cause of RSD/CRPS is unknown, and current treatments are not effective for many patients. Reflex sympathetic dystrophy syndrome, or RSDS, is known by many names. These include causalgia, Sudeck’s atrophy, shoulder-hand syndrome and regional complex pain syndrome. The cause of this disorder is unknown but appears to involve abnormalities of the sympathetic nervous system. This network of nerves, located alongside the spinal cord, controls important body functions; in particular, the opening and closing of blood vessels that regulate blood flow and the control of sweat glands that regulate temperature. Reflex sympathetic (REE-flecks SIM-pah-theh-tick) dystrophy syndrome, or RSDS for short, involves a disturbance in the sympathetic nervous system which is the network of nerves located alongside the spinal cord and controls certain bodily functions, such as opening and closing blood vessels or sweat glands. It primarily affects the hands and feet. What Are the Symptoms? First Stage Affected area is painful and swollen. Changes in temperature and color of skinRapid nail and hair growth Stiffness. The second stage occurs after weeks or months, and includes the following symptoms: Burning painCool skinBrittle nails Swelling Muscles spasms. The third stage may result in permanent changes such as: Severe pain. Skin may become drawn. Muscles and other tissues become wasted and contracted (tight). Joint movement and limb function are reduced.What Causes It? Although the cause is unknown it can occur as a result of injury to nerves, bones, joints, occasionally muscles, tendons or ligaments. Other triggers may include: Infections Cancer Diabetes Disorders of neck/lower back Thyroid disorders Lung diseaseStroke/heart attack. Use of certain medicationsTreatment Options. An early diagnosis and treatment can help reduce or prevent permanent damage.Treatments may include: Biofeedback Exercise Medications: alpha-blocking drugs, calcium channel blockers, local anesthetic blockers, Bien block, Physical therapy, Surgery TENS unit (transcutaneous electrical nerve stimulation). Who Is At Risk? RSDS frequently occurs between the ages of 40 and 60 but also can occur in children and the elderly. It is more common among women. How Is RSDS Treated? Early treatment of RSDS is very important. Your doctor will design a treatment program based on the duration and severity of your symptoms. Muscle relaxants may help, especially when there are painful muscle spasms. A formal physical therapy or occupational therapy program with stress-loading and limited range-of motion exercises should be started immediately to help maintain flexibility and strength. Your doctor may prescribe corticosteroid (cortisone-like) medications. These are powerful drugs that require very careful monitoring by your doctor and may have a variety of side effects. In patients with increased blood flow to the affected extremity as determined on a bone scan, corticosteroids given in high doses for two to three weeks can be very effective. The use of medications such as alpha-blocking drugs or calcium channel blockers or procedures such as local anesthetic sympathetic blocks to increase blood flow to the involved area frequently relieve most of the pain, particularly when used early. With sympathetic blocks, a numbing agent (local anesthetic) is injected into the spinal canal (for epidural blocks) or alongside the spinal column (for paravertebral blocks). Sometimes medications are injected into the veins of the foot or hand. This form of block (called a Bier block) may produce similar relief. Sometimes a single injection is all that is required, but it may be necessary to repeat this several times depending on the response. Sympathetic blocks may relieve and sometimes cure RSDS, especially when given early and coupled with an appropriate exercise program. Sometimes blocks produce temporary relief for hours or days but do not provide permanent relief. Treatment with transcutaneous electrical nerve stimulator (TENS) unit or biofeedback may also be tried. A TENS unit is a small, battery-operated device that can relieve pain by blocking nerve impulses. Biofeedback is a technique that can help control pain, blood flow and skin temperature. Acetaminophen, aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs), including COX-2 inhibitors, or narcotic analgesics (pain relievers) containing codeine-like medication may be tried to relieve pain. Other treatments have been used in RSDS. They include medications that affect bone growth (calcitonin and leukotriene inhibitors). Anti-depressants and anti-seizure medications (neurontin) can provide additional relief.

Advertisements

22 thoughts on “RSD(S)/CRPS Summary Description

  1. Thank you!
    Although I am very aware of RSD I feel you have given me the best explanation of what it is and how it effects a person. My boyfriend broke his leg over 2 years ago, although he told the ambulance staff that he heard it crack they insisted that he walked from his flat, down the many steps in the garden to the awaiting ambulance. He had broken his lower leg in two places and they were not clean breaks. His cast was put on too tight even though he again said that he had discomfort and he then developed blood clots which the local hospital ignored, until he admitted himself in after not being able to cope with the pain any longer. Tests showed he had blood clots! He had only recently broken lower leg in two places and he was in terrible pain with his leg and of course then the clots. He was roughly treated by medical staff who literally hacked his cast off without any care for his shouts of pain. Inbetween all of this he was alergic to the ‘rat poison’ that thined his blood and had to have injections everyday. No one gave him advise on what to do when he got home after breaking his leg, which I feel was the main factor of all the problems he suffered with following the break. Following all the things he had to endure he was then diagnosed with RSD. He is now 44, trys to work when he is able to (Network Engineer Contracting) but suffers terrible throughout the day with the travelling, on the go, he networked the Ascot racecourse last year and had to wear stealcap toe boots or otherwise he couldnt gain access to the site. Even though he explained his condition, he was treated as if he was lying to them because people do not understand what it is like. I am his carer, I see what it has done to him. He has recently had a cortosone (excuse the spelling) injection which stopped the swelling, it took away the original pain he was so suffering with and replaced it with a different kind of pain. He tends to get home from work and instead of going home to relax he will drink and take substances because he says its the only way he can stop the pain and give him a couple of hours of numbness. I battle now with his alcohol and substance abuse, it is so difficult to reach him at times. He was such a laid back easy going person until RSD, he is now angry, abusive, temper fires at the smallest of things. No matter what though I will be there for him until they hopefully one day find a way to give him releif from the constent pain and bring him back to me.
    Thank you and I’m sorry if the above sounds like I’m a drama queen, the above actually doesnt even touch on what it is really like to watch a person with RSD and know that no matter what I try to do, it will never help his pain.
    Chrisitne

    Like

  2. Thank you! Although I am very aware of RSD, I feel you have given me the best explanation of what it is and how it affects a person. My boyfriend broke his leg over 2 years ago; although he told the ambulance staff that he heard it crack, they insisted that he walked from his flat, down the many steps in the garden to the awaiting ambulance. He had broken his lower leg in two places and they were not clean breaks. His cast was put on too tight even though he again said that he had discomfort and he then developed blood clots that the local hospital ignored, until he admitted himself in after not being able to cope with the pain any longer. Tests showed he had blood clots! He had only recently broken lower leg in two places and he was in terrible pain with his leg and of course then the clots. He was roughly treated by medical staff that literally hacked his cast off without any care for his shouts of pain. In between all of this, he was allergic to the ‘rat poison’ that thinned his blood and had to have injections everyday. No one gave him advise on what to do when he got home after breaking his leg, which I feel was the main factor of all the problems he suffered with following the break. Following all the things he had to endure, he was then diagnosed with RSD. He is now 44, try’s to work when he is able to (Network Engineer Contracting) but suffers terrible throughout the day with the travelling, on the go, he networked a racecourse last year and had to wear steal cap toe boots or otherwise he couldn’t gain access to the site. Even though he explained his condition, he was treated as if he was lying to them because people do not understand what it is like. I am his carer; I see what it has done to him. He has recently had a cortisone injection that stopped the swelling, it took away the original pain he was so suffering with and replaced it with a different kind of pain. He tends to get home from work and instead of going home to relax he will drink because he says its the only way he can stop the pain and give him a couple of hours of numbness. I battle now with his alcohol abuse, it is so difficult to reach him at times. He was such a laid back easygoing person until RSD, he is now angry, abusive, temper fires at the smallest of things. No matter what though I will be there for him until they one day find a way to give him relief from the constant pain and bring him back to me. Thank you and I am sorry if the above sounds like I’m a drama queen, the above actually does not even touch on what it is really like to watch a person with RSD and know that no matter what I try to do, it will never help his pain.

    Like

  3. I have from a forklift injury to my right foot know told RSD sue to skin changes spoke of and sensitivity to skin in area.Also have observered that it seems to be spreading up my ankle from section of my foot that was crushed by the 5000lbs wheel ran over entire foot 😦 I also seem to be now having problems with Blood clots to lungs that have revolved around the injury of the foot.Im stuck in the legal system the compant that is suppose to take care of me saying that RSD cant be causing the clots I beleave the RSD is the cause would like your take on this. Thanks Robert Thomas

    Like

    • I have RSD and also Type II Protein S Deficiency (qualitative genetic defect) and have had two dangerous blood clots. Wish there was more investigative info on the correlation of the two.

      Like

  4. I also have RSD and have had for 38 years now. I still get total nonsence from some of the Dr’s who I have had to see recently from the Comp Board as they do not have a clue what they are saying about this disease at all. I do understand and feel for your loved ones who suffer from this terrible disease as it can be all consuming with the constant pain it leaves you in. I am at the 200 mil of morphine level a day now and have been for 14 years but the board still won’t listen even tho they were the ones who found in back in 1979 in their own hospital.

    Like

  5. My heart is with each of you. We go through so much with this illness and the disabilities that it causes us.

    Much of the health care is at a loss for information for us. They don’t know how to treat it, everything is hit or miss.

    I do understand with incurable illnesses that it is just that incurable, yet I do believe more clinical trials for RSD/CRPS patients are greatly needed.

    I support the RSDSA- http://www.RSDSA.org fully for Jim Broatch is our main advocate.

    You can find me at MD Junction- An RSD Support Forum
    http://www.mdjunction.com/reflex-sympathetic-dystrophy

    I’m one of the Group Leaders, my ID is rsdcrpsfire.

    Hope to see you there!

    We’re family oriented, but not without a bit of drama at times, it’s important to respect one another as we’re all in pain. We understand frustrations happen, but we won’t tolerate repeated personal attacks, either.

    Wishing you all pain eased days and nights,
    ~Twinkle

    P.S. Workers Comp is the worse and cruelest system I’ve ever dealt with.

    Like

  6. I am in so much pain and depressed, I feel like I lost everything, I can’t work horrible father husband, and over time developed A S.A problem which devestates everyone. Ganglion blocks, meds etc.. no relief. I feel cursed. Started on my hand arm, all over my feet to knees, my hips, rectum etc…. I have lost my will live!!!

    Like

  7. No one understands, family, friends doctors etc,,, I can’t believe 2 years later how bad this monster is. The scary part is at time I tell my wife I would rather have Cancer because at least their is a finality!!! I know that sounds crazy. Today all my toe nails fell off. Does anyone get it!!!

    Like

    • yes I get it. I was at my wits ends taking any & every type of pain killer then I had an idea. I started taking methadone for the pain just over a year ago & about 2 weeks in I smiled for the first time in years. . Please email me & I will tell you more. Have hope 🙂 The sun will shine on you very soon !!

      Like

  8. I have this rotten disease in both arms and have had it for almost 38 years now. The main pain relief I have from it is by taking 200 mlg of Morphine everyday for the last 15 years or so now. I also have been licenced for the Marihuana program as well about that time length as well. They wanted me to go higher on the Morphine but I refused as with this amount I can actually still function quite well mentally and physically. I like everybody else still have responsibilities and also love my independence as well. My body has learned to live with this amount as I am now regulated to it and I live mostly pain free in comparison to what I had before. This is the only way I could survive as I also was approaching the suicidal thought period of my life with it. If I am hooked on the Morphine which I probably am I really don’t care as I do not abuse it ever but have a strong will to survive. My employeer still lies about it and so does the comp board but hoefully this July 19th we are able to change all this at a tribunal again.

    Like

  9. I went into the Ontario WCB court of appeal with the facts from 9 different Dr’s backing my claim. They used a puppet who works for them who did all the wrong tests to refute everything I had on file and of course they listened to him. I got 000 as the lies were just too much. I knew before going in that the judge had her orders never to let us win anyways as that’s what they do. Lie lie lie is all they are good for in Ontario. Pass the costs onto welfare or other tax payer funded accts but never the Employeers who get the huge reates for causing all this grief and lieing thru their teeth.

    Like

  10. Considering the approaching birth of a new baby a lot of new parents are occupied
    with things to purchase and how exactly to decorate the nursery.
    Unfortunately, as a result a lot of parents may not be educated
    on cord blood donation and the advantages of doing so.
    If only more parents could donate their baby umbilical
    stem cells it could help to cure more diseases (presently it helps
    fight approximately 80 conditions and illnesses) and save
    more peoples lives.

    Like

  11. I wish I was young enough to have more kids but I sincerely appreciate any research or help being done to cure this filthy disease. I am 38 years living with it now and am in stage 1. No turning back ever. I have excepted that part years ago now but I still hate it.

    Like

  12. I have RSD after a bad ankle break. I did not realize that pain could be so debilitating. I have had 4 nerve blocks, each lasting about ten days of pain free days. Today I had an alcohol block, painful but am hoping it works. Since I have an addiction problem I wasn’t given any opiates until today, the anesthesiologist gave me a script for oxycodone, but still have pain in the foot. Also am taking Lyrica and Soma. Now I suppose I will just be a drug addict again. My depression is so dark, at times I don’t want to live another day. It is so totally a life changing disease, like having a chunk of ice in the middle of my foot but affecting my whole body. It is awful and everyone who suffers from it is experiencing a type of pain that is unimaginable. And explaining it to those who don’t understand is futile. I want to get on the medical marijuana but I live in North Dakota-good luck there, huh? Peace.

    Like

  13. I am very sorry to hear what you are going thru with this disease as I also have it down my left side and arm. For me its been since 1974 and i finally have been medicated properly about 20 years ago now with 200 mg of Morphine every day. I get no side effects from it with the drug at all and take it on a dailey basis ever since. Unfortunately there is many of us in Canada who suffer from this problem and someday there may be a cure we hope. Please know that those of us who are there suffer with you and know how bad it can be as well. You are Never alone in this fight to be Pain Free as well. For me I have found between the Morphine and a Very strong Will I Block the vast majority of the daily pain levels out. That has been MY most successful way of dealing with it to this day and I suspect the rest of my life. Please Remember you are NEVER alone in this battle against it. Barrie Dale

    Like

    • Barrie, I can’t imagine having this for 40 years. My heart goes out to you for enduring it for so long already. I’m happy to know you have found relief without side effects. I do believe that people who need a medication to reduce and maintain pain levels do not generally experience side effects, nor do they abuse and they don’t become addicted crazed people. You are the perfect example. I very much thank you for sharing. I took Morphine for a few years myself. Ms Contin 15 mg x 3, so 45 mg a day. I was able to get off it in 2009, when I had my second lead added to my Spinal Cord Stimulator. I then opted to try another form of med for 3 years. Today, I do use the lowest dose of this Rx pain patch to assist enough to take the edge off some of the symptoms. I agree that will power is most important for day to day, even for moment to moment survival. Thank you so very much again. ~T

      Like

      • Thank You Twinklev for your comments. Its been a long road for many of those years until I finally was able to learn how to use the power within my own mind as much as I do. Its hard to believe what the mind alone can do for ones own self. One of the worst parts of this disease is the fact that No-body else can ever know how you feel on any given day with regards to your pain levels as they cannot see anything wrong with you. Now I tell anyone who aks ” I am fine” as they would probaly never understand anyways unless they have a similar problem. I KNOW I understand when someone else says they hurt what it really means to Hurt. I promised my self I will never let it win and destroy me. Thats when my mind starting taking care of the pain levels much better after that..

        Like

      • You’re most welcome, Barrie. I very much agree. Other’s don’t know because it’s invisible to them. If we look fine, we must be. They don’t realize what it takes to get through. Especially to live in our own head/minds in order to do it. Using positive affirmations, or mantra’s through out the day to release negative thought brought out by unrelenting pain. You’re right, they don’t know and they don’t know the strength it takes to keep from bailing on life itself. One day those people will know pain, even if in old age, because everyone will eventually, healthy bodies, too. Arthritis alone is most painful. Perhaps it will only be then that those who didn’t understand, will. My thoughts are with you. Sending a hug your way,. ~Twinkle

        Like

  14. Cortical Integrative Therapy has been used for RSD and I am looking into it. I broke both ankles and my leg in 2008 and have been living by taking oxycontin, neurontin, injections and a muscle relaxant. You have to include your wiil power as this is the most important ingredient used to control the pain that no one understands. Although I am not pain free, I have to schedule what I do around the time I take my meds and what the day requires. I am looking into CIT in my area and will advise if I am a candidate for this treatment. Please always remember, especially when the pain has taken over your day or it’s at the worst, that we who have this affliction suffer with you and know what you are going through.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s