RSD/CRPS Facts

1.) 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.(1)

2.) One of the symptoms of RSD/CRPS is Edema (Swelling.) Medical Professionals tend to tell Patients to use Ice.  Ice is OFTEN mistaken as the best treatment, but in many cases it can actually cause further nerve damage.  Moist heat has been shown as a better alternative with elevation and other means to control the edema.

Everyone is different but use caution any time ICE is suggested.

3.) There is no cure for RSD but the earlier you can get treatment the better, but never give up the hope of remission.  

Some promising treatments include sympathetic nerve blocks, medication (such ascalcitonin, IVIG, Ketamine, Calcium channel/Beta/Sodium/NDMA blockers, steroidstricyclicanti-depressives, anti-convulsives, and NSAIDs), physical therapy (Aqua, Horse, and Typical Dry therapies)psychotherapy, Calmare, ultrasound and electrical stimulation. More invasive treatments include, spinal cord stimulators, dorsal column stimulators,  ketamine infusions, morphine pumps, STS (Vecttor). There are more treatments available as the research progresses.

Any treatment you start should be well researched and discussed with your doctor before starting or ending regimen of treatment.


4.) RSD pain is ranked 45 on the McGill pain index, which means it is rated as the most painful chronic pain disease that exists. It is above cancer(non-terminal), and both medicated and non-medicated pregnancy.

5.) Early and accurate diagnosis and appropriate treatment are key to recovery, 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.(1)

6.) It is not a rare disorder, and may affect millions of people.  It is hard to pinpoint the number of people who have RSD/CRPS, though some estimates put the number of people afflicted with this syndrome at 6 million (2) and other estimates claim between 5% and 10% of the population.
That makes the RSD/CRPS population of the United States greater then that of the Combined Military, 
2,221,502. (3)

7.)This is not a mental disorder. The development of psychological problems does occur in some patients.  It is important to develop a good support system with your doctors, family and friends to alleviate additional stress.  Find and utilize local or online support groups.  YOU ARE NOT ALONE, YOUR PAIN IS REAL

8.)There are two types of RSD/CRPS

Type One (I) is what we would call classic RSD and now it is called CRPS. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the medical issues that end in “itis” ; bursitis, arthritis, and tendonitis to name a few. It can involve minor nerve damage.
Type Two (II) involves damage to a major nerve. It used to be called Causalgia. It also involves a clearly defined nerve injury that can be tested by an Electromyography (EMG).(4)
9.) 54% of returning war veterans with chronic pain, according to a 2006 survey taken by the American Pain Foundation, are diagnosed with Polytrauma or Causalgia (both military “code” for RSD). This is “Easing the way for vets and civilians, [as] more insurers are covering Ketamine infusions, says Dr. Getson. (8)10.) A lot of studies now show it is rare in Chronic Pain Patients, who take Opioids and Pain Medicine daily, to become addicted to them, even in patients with histories of drug abuse and/or addiction.  RSD/CRPS patients can develop a physical dependence on opioid drugs, but this is not the same thing as addiction, which is an aberrant psychological state. (5)

11.)

We deserve to wake up each day and smile. We are more than just patients, we are mothers, fathers, daughters, sons, aunts, uncles, nieces, nephews, grandchildren, grandparents, and more greatly we are unique. We are what we allow ourselves to be and if we allow a big bully like RSD/CRPS define who we are, then that is wrong! You are worth it, and that’s a FACT!12.)

Reflex Sympathetic Dystrophy remains grossly under treated in most patients. The reasons for this are:  lack of knowledge among both health professionals and consumers about pain management; exaggerated fears of opioid side effects and addiction; and health professionals’ fear of medical board and DEA scrutiny, even when controlled substances are used appropriately for pain relief. (5)13.)

The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although this progression has not yet been validated by clinical research studies.
(The Stages are no longer used for Clinical Use)Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.

Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.
In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted. (6)

14.)Allodynia (Ancient Greek άλλος állos “other” and οδύνη odýni “pain”) is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site.

Allodynia is different from hyperalgesia, an extreme reaction to a stimulus which is normally painful.Those who experience allodynia can experience severe pain sensation simply from clothing, air movement (such as a breeze or wind), or a light touch on the arm.

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16.)RSD/CRPS is often called the “Suicide Disease,” because it causes so much pain that the patients are in greater risk of taking their own life. That is why it is so important to get support for yourself and fellow RSD Angels. Let not one flame of an RSD Angel burn out! We are here for you! If you ever need to talk email rsdcrps@gmail.com or call the National Suicide Hotline 1-800-273-8255.

17.)Consult with a knowledgeable Anesthesia Doctor when considering surgery, as there are studies regarding different methods to decrease the risk for spread or worsening of symptoms.

18.)Immobilization is not recommended in many cases so be sure to discuss the need,

if it arises, with your RSD/CRPS doctor

19.) Pain is a vital sign! Do not allow it to be ignored. Your pain should be assessed before and after intervention, if it is not please advocate for yourself in this area.

20.)Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Causalgia, Sudek’s Atrophy,Sudek’s Dystrophy,traumatic arthritis, minor causalgia, post traumatic osteoporosis, post traumatic pain syndrome, post traumatic edema, post traumatic angiospasm, shoulder/hand syndrome, and sympathetically maintained pain syndrome.

All names for the same disease!

No Matter how you say it….it Hurts!

10 Responses to RSD/CRPS Facts

  1. Sue says:

    I developed crps in my right arm/hand following rotator cuff surgery 3 years ago. Over the last few months I have felt it spreading into my left arm/hand and have developed a frozen left shoulder. Fortunately, I have a ketamine infusion scheduled to be done 3 days from now. I’m a bit nervous about the hallucinations. A question I have to answer soon though is whether or not to have manipulation under anesthesia done on my left shoulder. The surgeon and a PT who works with me said it won’t aggravate the crps. However, another PT I work with said to definitely avoid getting it because it will most likely cause spreading. How do I make the right choice? The pain in the shoulder is excruciating on top of the already existing crps pain!

  2. Alison grimes says:

    I developed rsd 9 yrs ago in my right hand/ arm/ shoulder.. I have been in severe pain with this, now it seems like its spreading down my spine and into my left arm. But because I have multiple health problems this condition has been pushed 2 one side. I have had no help or support and going doctors about it spreading etc I’m made to feel like I’m a hypochondriac, where do I go for support. Is there anything that can be done for this, I’m now getting added pain in my wrist and palm. I am soo frustrated!!

  3. I developed crps back in 2009 i fell while working broke my wrist impacted my shoulder severely, I have marked nerve damage in on my left hand ring and middle finger don’t work properly. I had to file this injury under workers comp.i did not get help with the rsd about a year after the accident. The insurance company refused to add my shoulder on. So after fighting them they finally added my shoulder, and I eventually got to c a pain doctor in 2011 and was diagnosed with rsd at that time. But since my primary care physician w/ workers comp dropped me in 2011, and my pan Dr. Dropped me in 2013. I have been trying since then to get another pain Dr. But workers comp and insurance company are halting the process. I believe the rsd is spreading to my other organs I was diagnosed with chronic bronchitis/copd in 2015, and diagnosed with chronic abdominal pain just days ago. Dr. said my stomach problems are due to my rsd. I can’t get help from workers comp, and I need to see a doctor for my rsd and the other diseases I have developed because of the rsd. Any advise would. be appreciated. I have a lawyer that helps me get my supplemental income from the insurance carrier, but they refuse to help me find another primary care physician to get a referral to another pain management doctor. I am suffering and I don’t know what to do. I have an email address but I don’t. have internet in my apartment.

  4. rsdno says:

    Hi Ive had RSD and Fibro dxed in 1968 been on same amount of pain meds since 1983 but this silly opiate game where “If we punish the good then society will get the abusers ” I hear if I cant handle opiates how can anyone else Gee Thanks never had one problem in 35 years but see the happy people wanting the people who use medication as its written by the Doctor
    RSD is like when I had a Third Degree Burn watching my flesh drop like liquid and I only had %15 ,the stress so happily brought against those of us who never did one thing wrong get tortured with the bad. I now sleep 4 even six hours occasionally a Doctor took pity on me,if you saw the Sean Penn movie “Dead Man Walking”its like the torture Lobbyists and politicos and people who dont have RSD plus different things work for different people ,I never felt anything like RSD and its sick but I was happy I could say see :The Doctor said it can be the most painful disease there is ,so Im maybe not the worthless useless peice of art you called me.
    Fibro pulls my muscles I even get TOS in my jaw when does this end oREGON IS THE aSSISTED sUICIDE rIGHTS state ,if that ever comes true for me I want to sign up.Look Pain Patients are expensive think of the money they save by getting us to kill ourselves (lost my best guy friend last week) Im a sad PTSD of what 10 years ago was a vital human being

  5. Mike Krol says:

    I know. I’ve been pushed to see a psycologist to a certain Medication that I was told they couldn’t give me anymore. Long story Short. I found in my Medical records about seeing her that I was being evaluated for Suicide tendacies. They give them to me because they treat me like I am doing this to myself so I can get high!. I’ve had RSDS-CPRS since 1989 and they were going to amputate my leg. It finally took hold when an elderly Dr saw me and said my GOD you need pain relief! in 1993 , 4 years later after getting RSDS. Then I was able to start getting able to fight it more and actually get of bed and my wheelchair. They still want me dead and I can prove it, but I dont dare try. GOD BLESS Everyone with this problem, We will get help in heaven. I Hope.

  6. Marion Lewis says:

    I also was diagnosed with RSD/CRPS after having had my second knee replacement in the same knee. I am in constant pain, and everything I have tried, topical, drops or pain meds, only helps me temporarily.

  7. Jodi says:

    A nerve block given to me pre-ACL surgery resulted in CPRS in my leg. This was optional and I made the wrong choice. Swelling is terrible and impedes movement of my leg.

  8. Tracie Barnhill says:

    When was CRPS first called the suicide disease? Trigiminal Neuralgia Association UK was known as the suicide disease in 2013. I’m having to educate the doctors that I see more than I realized.

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