Please read and pass along to your friends and family members, and medical professionals as well if given the opportunity. Knowing how to recognize RSDS/CRPS in its early stages can literally save a person from a life of crippling, disabling pain, cramping, dementia, and many other conditions associated with RSDS. If anyone has any questions, I would more more than happy to explain the syndrome, go into further detail concerning the RSDS/CRPS communities thoughts on Paula Abdul's diagnosis, and so forth.

I have included many links at the end of this letter; these are some of the best and most accurate sites and organizations out there for RSDS/CRPS. This is, however, only a short list. While there are many other great sites available and sources available, I have chosen a select few which will provide all information you may want to know. As with anything and everything, the internet is full of incorrect and misinformation, so you must be careful what you read and learn to be true...especially in a case such as RSDS/CRPS where very little is known about the syndrome. I encourage all of you to learn, at least a little, about RSDS/CRPS. Anyone can get it: young, old, male, female, lazy, athlete, black, white, Asian, housewife, or businessman. RSDS does not discriminate. It may be caused by something as little as a pinprick from having blood drawn or a vaccine, to something as traumatic as a crush injury. It is very important to know and understand that RSDS/CRPS affects the ENTIRE body and it's organ systems, not just the sympathetic nervous system.

IMPORTANT ENTERTAINMENT/MEDICAL ALERT

For those of you who have not heard, Paula Abdul was recently interviewed by People Magazine regarding her medical past. In this article, she admits to having been diagnosed with RSDS/CRPS. Please be advised that Paula Abdul IS NOT what RSDS represents. The article, as well as her own confessions, are very inaccurate and misleading. According to the writer, as well as Abdul, she is taking no drug other than Enbrel, an injectable drug designed for rheumatoid arthritis and some cases of psoriasis. In her own statements, Abdul says Enbrel cured her RSD. Those of us who truly have this syndrome know that there is NO CURE and LIMITED treatment once the disease progresses.

RSDS/CRPS is a DISABLING disease and recognized by the Social Security Administration as a qualifying disabling condition. According to Abdul, she developed RSD after a cheerleading accident at the age of 17. There is no possible way that she could have had RSDS and continued to cheer, much less enjoy the career that she led as a singer, dancer, and choreographer throughout the 1980s. Abdul does admit to using pain medication, opioid and morphine based, in the past; however, a narcotic pain medication, Oxycontin, had not been developed during a time period in which she states she used that drug.

Anyone living with RSDS/CRPS, as well as their friends, family, and caregivers, know fully well that the skin becomes extremely hypersensitive, to the point where a slight breeze on exposed skin can cause crippling pain and tears. The skin also becomes discolored, splotchy, and swollen. The skin itself swells, the joints swell, non-affected areas develop severe arthritis, there is a change in the growth of body hair and nails. We also itch... A LOT...to the point where some medical professionals suspect heavy crystal meth use (heavy crystal meth use causes the drug to crystallize underneath the skin, causing the addict to constantly itch). Paula Abdul never presented any of these signs and symptoms. Also, whether one has "hot" RSDS or "cold" RSDS, the sufferer CANNOT and WILL NOT use icepacks of any kind. Anything cold, including the weather, intensifies the pain tremendously. Topical creams and ointments must be heated prior to application (just like warming a baby bottle), body parts must be wrapped in layers of special material, often neoprene, to hold in heat. Heating pads, electric blankets, hot epsom salt baths, infrared therapy, and trans-epidermal neuro stimulation are daily essentials. Most sufferers cannot tolerate atmospheric temperatures below 75 degrees F, and direct temperatures below 80-85 degrees F. How then, is it that Paula was able to consistently apply ice packs to her neck every day?

Documented back prior to the Civil War, RSDS/CRPS has been around for a very long time, but has only recently begun to be studied. The most common complaint of patients is the constant burning pain, like hot oil is on the skin. One man, after developing RSDS in the 1800s, never took his hand out of a bowl of water that he carried with him everywhere due to the burning pain. By her own admission, Abdul never experienced this pain. The second most common complaint is a feeling of the affected limb or limbs "not being a part of the body," and having to concentrate and focus in order to use and move the limb. Again, Abdul did not present this symptom. RSDS/CRPS also causes muscle twitches, spasms, and cramps...none of which Abdul ever had.

After waiving her HIPAA rights, Abdul's physician released a statement to the Reflex Sympathetic Dystrophy Association of America (RSDSA) stating that Paula took Enbrel for an inflammatory arthritis, not RSDS. This raises even MORE skepticism, since according to this statement, she now would not be taking any drug for her supposed RSDS/CRPS. Additionally, Abdul states that she is not addicted to drugs of any kind. Unfortunately, for those having RSDS/CRPS, this is impossible. Once the disease sets in past six to eight months, it continues to progress. Heavy medication cocktails are a major aspect of RSDS treatment. Most patients are put on high doses of Neurontin and Tegretol, two anticonvulsant medications. Tricyclate antidepressants such as Amitriptaline are also used. Anti-inflammatory medications are heavily prescribed. Personally I have had two of my medications pulled from the market in the past year. Vioxx and Bextra were very popular, as the cox-2 inhibitors are safer on the GI tract than the older, more traditional non-steroidal anti-inflammatory drugs such as ibuprofen and Aleve. Unfortunately, the only cox-2 inhibitor available now is Celebrex, which does not work as well as Vioxx or Bextra. Naproxen is often prescribed (heavy doses, not OTC Aleve), as well as ibuprofen (again, prescription strength). Along with these medications, narcotics are also used. The most common is Oxycontin. Others include Percocet, Tylox, Soma, and morphine. Xanax and Flexoral are two other drugs very commonly prescribed. Ketomine ("Special K") has started to be used in certain cases as a pump (similar to a morphine pump in the spine). There are of course many, many other drugs that are used, as each case is different and each person reacts differently to their own cocktail. However, with having to take all these medications, one naturally becomes addicted...purely not by fault, just through prescribed use. To suddenly wake up one day and stop taking your medication would send the person into severe withdrawal symptoms, even shock.

Abdul, 42, now says she is pain free, with only having to take one shot a week of Enbrel. Extremely unlikely if the case were RSDS/CRPS. If, as she states, she developed the condition at 17, the years of abuse on her body from numerous injuries, a plane crash, auto accidents, bulimia, and jumping/bouncing/twisting/etc. on stage would have caused the condition to spread or worsen. Just the head and neck movements of being a dancer would be nearly impossible in themselves as RSDS/CRPS severely limits joint movements without proper therapeutic in a specialized therapy regimen. Having twelve surgeries, as Abdul did over the past few years, on an RSDS affected area would be detrimental for someone suffering from RSDS/CRPS, the act alone would cause a severe spread and worsening of symptoms.

Not much is known about RSDS/CRPS, even today. It is known by six different names, and the majority of medical professionals still do not know about it...and if they do, they do not fully understand the physiological aspects of it, what to look for, and/or how it affects and reacts within the body. For years, it was considered strictly a psychological disease and physicians would not do any type of treatment whatsoever. Patients were rather referred to psychiatrists and psychologists. It was not until 1997 that the American Medical Association came out and classified RSDS as an actual physiological condition.

Once thought to be strictly a disorder of the sympathetic nervous system, it is now known to involve and affect the entire nervous system...central, autonomic, sympathetic, etc. It has also been found to "jump" body systems to affect the other systems in the body...in my case the endocrine and digestive systems, as well as the immune system. I can be hospitalized by the common cold due to a compromised immune system. Fortunately, I have been very blessed this past year and have not been sick (knock on wood). MRI studies indicate that prolonged periods of chronic pain cause brain degeneration, as most of you know I have as well. RSDS/CRPS also causes bone deterioration in affected areas...in my case my femur, tibia, and fibula in the left leg are slowly loosing density. Severe insomnia is a major aspect of RSDS; prescription sleep aides, OTC sleep aides, and homeopathic remedies do not help with the sleeplessness. We must sleep when we are able to, which quite often is early and mid to late afternoon...for some reason most RSDers are able to nap during these times much easier than other. The solution is not stay awake during the day and sleep at night either. If that were the case, things would be wonderful. Most nights we log online and enter our support chat rooms to talk to our fellow RSDers throughout the country and the world, offering words of advice, encouragement, news, and so forth...all while our significant others are sound asleep. One common factor every person who has RSDS/CRPS is memory loss. For some reason, yet to be determined, we are able to maintain our long term memories, yet our short term memories quickly fade away into oblivion. I must carry a notepad everywhere I go and write everything down, otherwise I will forget. I often make notes on Post-Its, and end up loosing the notes because I forgot where I put them. Many people with RSDS also suffer from severe "hot flashes." I think I am the only man I know that can give a menopausal woman in her 40's a run for her money. My laundry load is immense, as some days I change clothes six times because I am so hot. I can get out of a "cold" shower (as cold as I can possibly tolerate), dry off completely, and by the time I am dressed I am dripping with sweat.

In many ways, RSDS/CRPS is like cancer. It affects many aspects of life, the body, and relationships. It is impossible to describe to our loved ones the pain that we are in, and often impossible for our loved ones to understand why we just can't do this or that, go here or there, sweep the floor, weed the garden, etc. There is only a limited amount of energy, and it is used up quickly. RSDS can also spread: it can spread continuously (expanding from an affected area), mirror image (if the left knee is affected, the right knee becomes affected), and randomly. The ultimate key to treatment is early detection, within the first 4-6 months of onset. If caught in time, the patient has an excellent prognosis. RSDS/CRPS, however, mimics many other conditions which doctors must first rule out, thus taking up valuable time. Many times the doctor will not know to even consider RSDS due to the type of injury, the signs and symptoms presented, or his/her own lack of knowledge. Unfortunately, there are still many physicians in the US and beyond that will actually amputate a limb to "treat" RSDS (which does not help and often worsens the condition). RSDS/CRPS can be caused by something as severe as a crush injury to something as simple as a pinprick (which is another point concerning Paula Abdul: someone having RSDS/CRPS cannot have surgery unless it is a lifesaving procedure. Any cut, surgical or otherwise, can cause random spreading of symptoms. This includes needle pricks. No doctor treating someone having RSDS/CRPS would prescribe a drug that must be injected, such as Enbrel, via needle, it is too risky). A study by Johns-Hopkins University found that the majority of RSDS type I cases are actually caused by needle pricks from having blood drawn, IVs, insulin shots, immunizations, etc.

There are two types of RSDS, type I and type II. Type I is more severe and more painful. Type II can be better controlled and is often referred to as causalgia. Those with type I can have two types of pain, independently maintained pain or *please forgive me, but my mind is drawing a blank on this one (maybe sympathetically maintained pain ?)* Some people have both types of pain. The most common pain is independently maintained. The second form is considered a "malfunction" within the syndrome. It is quite difficult to explain.

It is rare for RSDS/CRPS to "jump" body systems, but it does happen and has been fully documented. The much more perplexing thing is that just like cancer, RSDS/CRPS can go into remission at any time; however, this is EXTREMELY rare and unheard of. Only a tiny few RSDS remission cases have been seen or documented. Someone with RSDS can wake up one morning and be pain free for the first time in decades...and there is no explanation...it is not any drug therapy or herbal remedy or Chinese medical magic. It is the mysterious nature of the syndrome. On the other hand, that same person can go twenty years of absolutely no pain, then wake up one morning and the RSDS will be active again, with no justifying cause. If more than one area of the body is affected, some parts may go into remission, while others remain active.

There are four stages of RSDS/CRPS. Although it is difficult to distinguish between the stages, experts have developed some basic guidelines. One part of a persons body may be in stage four, while another is in stage two, while another is in stage one, and so forth. Like I said, RSDS/CRPS is very difficult to explain, understand, and live with. I applaud the many out there that live their lives with RSDS and try daily to not let the pain get to them. I also applaud the friends, family members, and caregivers of those with RSDS/CRPS, as they stay by our sides, take us to our many doctor appointments (anyone with RSDS has multiple doctors: pain management specialists, orthopedic surgeon, physical therapist, rheumatologist, primary care, etc.), and turn their head when we have bad "pain" days and unmeaningly take out anger and frustration on them.

RSDS/CRPS has been named as the most painful chronic pain condition that exists today. On the McGill pain scale, which rates pain levels of various conditions, injuries, and diseases, RSDS/CRPS causalgia on this particular model) is ranked ABOVE the amputation of a digit.

It is true that RSDS/CRPS affects every individual differently...absolutely NO two cases are the same. However, there are key characteristics that are present in every case, and Paula Abdul simply did not/does not exhibit these.

Please, I encourage you all to learn more, for your own knowledge...you may know someone who may have RSDS or may develop it. Remember: EARLY DETECTION IS KEY! I would be more than happy to answer any questions you may have, talk to groups, provide educational materials, posters, etc. I have spent six years educating medical professionals in Central Florida about RSDS/CRPS. I am very happy to say that it has paid off: recently an ambulance was called for me as I was having a seizure. One of the paramedics, noticing my medic alert bracelet, saw that I have RSDS and alerted the team. I have included links below, the first is to the People Magazine article. The second is a message board regarding Paula Abdul and various responses to the article in question from other people living with RSDS/CRPS.. There is a lot of misinformation out there on RSDS/CRPS, so you must be careful what you read and research. I have also included links to the most trustworthy RSDS/CRPS websites where you may find almost any information you need. Again, please feel free to ask me anything if you have any questions.

Although I do not completely discredit Paula's story or her complaints of chronic pain and other health problems, I do not believe she has/had Reflex Sympathetic Dystrophy Syndrome/Chronic Regional Pain Syndrome. The facts of her story do not add up, she did not present the basic qualifying signs and symptoms, there are too many holes in her story, the "treatments" are not valid, credible, or did not exist at the time she states she received them. She currently sees only one physician, Dr. Daniel Wallace, a rheumatologist. Rheumatologists treat joint problems, most notably various forms of arthritis. Those having RSDS/CRS must have a large network of doctors of a variety of specialties, as each will treat a different aspect of the disorder. According to Dr. Wallace, once he started treating Paula's RSDS as an inflammatory condition with anti-inflammatory drugs (in actuality he immediately started her on Enbrel and no other drug), everything changed. However, when RSDS/CRPS advocacy groups raised questions regarding her treatment and diagnosis, Dr. Wallace issued a statement to the Reflex Sympathetic Dystrophy Syndrome Association of America, in which he states that Paula is prescribed Enbrel for an "inflammatory arthritis," not to treat her RSDS. Once again, we see a major contradiction. Enbrel will not have any effect on RSDS in any way whatsoever, and since Abdul is taking no other medications, could she truly have RSDS? Developing the condition at age 17 and continuing down the path in which Paula Abdul took is nearly impossible. Having RSDS/CRPS in her neck, being untreated in any way, she states she was still able to cheer...even becoming a Lakers Cheerleader. The heavy, drastic, and rapid movements necessary in her career as a dancer/choreographer would not have been possible. As I stated above, RSDS severely limits joint movement...this would include the movements of the head and neck with untreated RSDS. Being involved in a plane crash and auto accidents where she suffered head and neck injuries would have progressed the disease if she has RSDS. Her numerous surgeries, all on a supposed affected area, would have been intolerable.

While I (as well as many others that live our lives with RSDS/CRPS and our family members) absolutely disagree with Dr. Wallace, Paula herself, and the various reporters covering the story, I do believe that she does/did suffer from a type of neuropathic pain, most likely a moderate case of neuralgia. This would better explain her type of pain complaint of pins and needles, as well as her "treatment" and "cure." If she truly had RSDS, she would have to be on basic medications, even in the extremely rare case of remission. Dr. Anthony Kirkpatrick, M.D., Ph.D, founder and director of the International Research Foundation for RSD/CRPS in Tampa, Florida agrees, Abdul just does not fit the necessary requirements for a diagnosis of RSDS/CRPS.

People Magazine Article: http://people.aol.com/people/ataol/articles/0,19736,1051641_1,00.html

AOL Paula Abdul Message Board:
http://boards.aol.com/aolopen/artlist.mbl?boardid=379401

International Research Foundation for RSD/CRPS:
http://www.rsdfoundation.org/index2.html

International Reflex Dystrophy Foundation:
http://www.rsdinfo.com/

Reflex Sympathetic Dystrophy Syndrome Association of America:
http://www.rsdsa.org/

RSDHope:
http://www.rsdhope.org/

List of RSDS/CRPS Articles:
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=51

National Institute of Neurological Disorders and Stroke: RSDS
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm

Neurological Associates, Pain Management Center
http://www.rsdrx.com/

Angel Eyes World of Chronic Pain Network:
http://www.geocities.com/Heartland/9897/

McGill Pain Scale in Color:
http://www.manbit.com/oa/f58-1.htm

National Organization for Rare Diseases:
http://www.rarediseases.org/

RSD Alert:
http://www.rsdalert.co.uk/

RSD & CRPS: Chronic Regional Pain Syndrome:
http://artzoo.com/health/rsdcrps.htm

These are just a few that I have compiled to help you out. Most, if not all, information and questions can be answered within these websites. There will also be links to other noteworthy sites. Again, there is much false information out there regarding RSDS/CRPS, causalgia, and neuropathic pain. Be mindful of where you get your information. For instance, at http://www.rssdsa.org/, the second edition RSDS/CRPS clinical guidelines is posted. Be advised that this is outdated and you may find the new and accurate third edition at http://www.rsdfoundation.org/.

I thank you for you time in reading this, and hopefully you will be passing it along to others so that we may hopefully begin to get the word out to the public and medical communities regarding this painful and debilitating disease, and possibly raise more funds for further research, development of treatments, and financial assistance to those who are fully disabled from Reflex Sympathetic Dystrophy Syndrome/Chronic Regional Pain Syndrome. And again, despite what People Magazine reports or what Paula Abdul states, you must remember that THERE IS ABSOLUTELY NO CURE FOR RSDS/CRPS!

~Kaiser~