Lyrica - New Drug Survey

Lyrica is a fairly new medication for peripheral neuropathy. RSDHope is conducting an unofficial survey of those who have taken this drug for at least 3 weeks. Please answer the following:

1) What dosage you started on and what side effects you experienced at the different dosage levels?

2) How you feel it has helped you?
For instance, has it helped decrease your pain?
Increased your sleep?
Enabled you to decrease your other medications, and if so, which ones?

3) Have you found a good time to take it in the evening? 6pm? 8 pm? 11pm?

Please send your Lyrica survey reply to:

rsdhope@mail.org

Also, please remember the basic tenets when sharing information about medication online:
1) Never stop or start any medication you hear or read about without checking with your Doctor first.

2) Always try to have ONE Doctor prescribe all of your medications if possible, that way you are less likely to have crossover problems and/or accidental overdoses.

3) Don't buy your medication online unless you know it is from a reputable pharmacy and/or company approved by the FDA.

4) Understand that different patients will react differently to the same levels of medication. Results vary depending on body weight, other medications being taken, other diseases conditions you have known and unknown, allergies you have known and unknown, and many more things.

Bottom line? Take what you read on the Internet as a guide, share it with your Doctor and together decide on a course of action. You might be fortunate enough to find a new medication that does wonders for you! You also may learn things about the medications you are on that could save your life. But remember these are JUST observations made by fellow patients.

Thank You!
http://www.rsdhope.org

For additional information: LYRICA

More Research Information!

Ongoing Research Studies for People with Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy

Please visit: http://rsds.org/3/research/index.html to determine your eligibility to participate in four ongoing clinical research trials.

"Insufficient medical research can be hazardous to your health."Former Surgeon General C. Everett Koop

Please help us spread the word!

No Help from Schwarzenegger in California

RSD Education Bill Vetoed by the Governor

Public Awareness Campaign Denied Signature for Little Understood Disease that Affects Up to 6 Million Americans

Sacramento, CA, October 7, 2005 – Today, Governor Arnold Schwarzenegger vetoed AB 1648, the Reflex Sympathetic Dystrophy Education and Research Program Act, introduced by Assemblywoman Fran Pavley (D-Agoura Hills). The bill would have authorized the State Department of Health Services to establish and implement a Reflex Sympathetic Dystrophy public awareness campaign using non-public funding. “It is unfortunate that the Governor vetoed AB 1648 since RSD affects more Americans than victims of breast cancer and HIV / AIDS combined.

The RSD and pain community is to be commended for its efforts to raise public awareness since there is no way to detect or cure this painful disease,” said Assemblywoman Pavley. RSD, which is estimated to affect between 1.5 and six million Americans, is a little understood chronic neurological pain condition of the central nervous system characterized by severe, burning pain (often described as being doused with gasoline and lit on fire). Many patients suffer alone in pain because of the stigma and misunderstanding associated with the disease. RSD is typically triggered by a minor injury or trauma.

Cynthia Toussaint, the bill's sponsor and founder of For Grace, a nonprofit dedicated to achieving the ethical and equal treatment of all women in pain, said, "RSD is a devastating illness if not caught and treated early. In signing AB1648, the Governor would have recognized the importance of educating allCalifornians about the consequences of delayed diagnosis and treatment for RSD.

"Toussaint, who suffers from RSD herself, knows all too well the consequences of delayed treatment and misdiagnosis. For 13 years, doctors told her that the chronic pain she felt was "all in my head. "Toussaint testified before the California Assembly and Senate Health committees this year in support of AB 1648, known as "Cynthia's Bill" in Sacramento. “The demise of 1648 is an unfortunate example of the short-sighted politics and economics that rule Sacramento today.

Make no mistake—hundreds of thousands will continue to suffer needlessly due to the ravages of RSD—and that's a terrible shame as the opportunity for change was just a signature away”, concluded Toussaint.

A prisoner in your own home?

An Alert from the United Spinal Association

"We need YOU to educate your representative in Congress about what
Medicare is doing to YOUR power wheelchair/scooter benefit.

The Center for Medicare and Medicaid Services (CMS) has recently issued
a series of draft and final policy changes to the coding, coverage and
documentation rules for power wheelchairs and scooters. Some of these
changes are scheduled to take effect October 25; some are scheduled to
be effective January 2006. CMS implementation plan for these separate
but related policies is undefined and could mean you might lose your
power wheelchair/scooter benefit and become a prisoner in your own home.

What can you do?

1. Go to www.rightwheelchair.org to educate yourself about this issue.

2. Call the Capitol Switchboard, 202-224-3121 and tell your
representative what Medicare is doing to threaten your independence"

Medicare Prescription Drug Coverage - NEW

Information on the Medicare Prescription Drug Coverage http://www.medicare.gov/medicarereform/drugbenefit.asp

ON THIS WEB PAGE YOU WILL FIND THE FOLLOWING SUB SECTIONS
Medicare Prescription Drug Plan Cost Estimator
This tool provides beneficiaries with an example of potential savings they can anticipate with Medicare Prescription Drug coverage. The cost estimator assumes that you have no current drug coverage or receive any type of discounts, such as from a drug discount card, on your prescription drug cost. If you know what you spend monthly on prescription drugs you can use the cost estimator to see what your potential savings will be by joining a Medicare prescription drug plan. It will also provide you with information on the lowest premium available in your State. The cost estimator is a quick tool to give you a sense of the savings you can anticipate with Medicare Prescription Drug coverage. This tool is not able to take into account any insurance you may have now for drugs. Therefore, if you currently have insurance for drugs, the tool will not be able to compare current costs to those you may have in the future if you switch to Medicare drug coverage. It also has two articles in PDF format, one entitled
"Getting Started" and the other "Things to Think About When You Compare Plans."

Your Medicare Prescription Drug Coverage Options Starting January 1, 2006, Medicare will offer insurance coverage for prescription drugs through Medicare prescriptions drug plans and other health plan options. Medicare's new prescription drug coverage will typically pay over half of your drug costs next year, for a monthly premium. It will also provide peace of mind because it protects you once your out-of-pocket drug spending is more than $3600 in a year. Even if you don't use a lot of prescription drugs now, you should consider joining. Your next steps depend on the type of coverage you have now. Please answer the questions below for information to help you understand what you need to do next. Important points you need to know:
· Medicare prescription drug coverage helps you pay for the prescriptions you need.
· Medicare prescription drug coverage is available to all people with Medicare.
· There is additional help for those who need it most.
· Medicare prescription drug coverage pays for brand name as well as generic drugs It then has a tool to help you decide if this program will be of benefit to you. Some people on Medicare already have other prescription plans that may be better than this new plan.

Extra Help for People with Limited Income and Resources
This is one that many of you will no doubt be able to take advantage of or are already taking advantage of. Apply Online for Extra Help with Medicare Prescription Drug Plan Costs If your resources are less than $11,500 (single) or $23,000 (married) you may qualify for extra help paying for Medicare Prescription Drug Coverage. If you haven't received an application or information about the extra help, and you think you may be eligible, you should apply. Remember, as Department of Health and Human Services Secretary Leavitt says, "If in doubt, fill it out!" You can apply Online by visiting the Help With Medicare Prescription Drug Plan Costs section on the Social Security Administration website. Some of you who have been getting this extra help may have already received notification that your new prescription drug plan premiums will be paid for you. This will be a huge help.

Frequently Asked Questions
All types of Questions and Answers concerning this program, such as:
QUESTION - How do I join a Medicare Prescription Drug Plan?
ANSWER - You can join a Medicare Prescription Drug Plan in the following ways:
*By paper application. Contact the company offering the drug plan you choose and ask for an application. Once you fill out the form, mail or fax it back to the company.
*On the plan's website. Visit the drug plan company's website. You may be able to join online. *On this website. You will also be able to join a drug plan at www.medicare.gov by using Medicare's online enrollment center.
*By calling 1-800-MEDICARE. You can join a drug plan by calling 1-800-MEDICARE (1-800-633-4227) and talking to a Medicare customer service representative.
*TTY users should call 1-877-486-2048.

QUESTION - Are any drug categories not included in Medicare prescription drug coverage?
ANSWER - Yes. Certain drugs are excluded, which means they can't be provided as part of standard Medicare prescription drug coverage. Some examples of excluded drugs include:
*benzodiazepines
*barbiturates
*drugs for weight loss or gain
*drugs for relief of colds.
However, except for non-prescription over-the-counter drugs, a plan can choose to cover excluded drugs if the plan offers more than standard coverage. Non-prescription drugs can't be included. However, under certain circumstances, they may be provided at no cost. (some examples of Benzodiazepines are Xanax, Klonopin, Diazepam) Another answer gave this information concerning what to do if your medication wasn't covered by the Prescription plan.
ANSWER - Medicare drug plans don't have to cover every drug that's included in Medicare prescription drug coverage. They only have to cover every type of drug. You should review what drugs are covered by the Medicare drug plans available in your area and try to join one that covers the same prescriptions you take now. If the plan doesn't cover your exact prescriptions, it's required to have a transition period where your current drugs may be covered for a certain length of time while you work with your doctor to find an alternative prescription drug to take that is covered by the plan. If your doctor believes you need to take your current prescription drug and should not switch to a covered prescription drug, you or your doctor can contact your plan and ask it to give you an "exception" which means the plan agrees to pay for your current drug. If the plan refuses to give you an exception, you can appeal the plan's decision. However, if you are currently stabilized on certain specific prescription drugs (like drugs for depression, cancer or HIV/AIDS), you don't have to switch to a different prescription drug. Please talk to your doctor or pharmacist to see if your prescription drugs qualify. When you join, the Medicare drug plan will send you information about its appeal procedures. Read the information carefully and call your plan if you have any questions. There are tons of Questions and Answers and if you don't see an answer to a question you have you can email them or call them. http://www.medicare.gov/ContactUs.asp
Here is a list of quick Fact Sheets that are available that can further assist you from the Centers for Medicare and Medicaid Services Website, an amazing website; http://www.cms.hhs.gov/medicarereform/factsheets.asp
Quick Facts about Your Current Prescription Drug Coverage and Medicare's New Coverage for Prescription Drugs
New Medicare Prescription Drug Coverage.
Who Can Help Me Apply and Enroll?
Quick Facts About Medicare Prescription Drug Coverage and Protecting Your Personal Information
New Medicare Prescription Drug Coverage: A Message for People Who Care for Someone with Medicare Quick Facts about Medicare's New Coverage for Prescription Drugs Tip Sheets

What Medicare Prescription Drug Coverage Means for You
Comparing Medicare Prescription Drug Coverage
Medicare Prescription Drug Coverage:
How to Join Information Partners Can Use on:
THE FIVE MAIN GROUPS BASED ON THE COVERAGE PEOPLE HAVE NOW
Information Partners Can Use on:
*People With Medicare and HIV/AIDS Other Publication
*Introducing Medicare's Prescription Drug Coverage (American Indians and Alaska Natives Version)
Medicare Prescription Drug Coverage is Available for American Indians and Alaska Natives *Prescription Drug Coverage is Available for all People in Medicare (Brochure) Introducing *Medicare Prescription Drug Coverage What Medicare Prescription Drug Coverage Means to You: A *Guide to Getting Started Vignettes/Bios/Case Studies
Basic Questions and Answers about Medicare Prescription Drug Coverage
Group 1 Basic Questions and Answers about Medicare Prescription Drug Coverage
Group 2 Prescription Drug Coverage Basics

Introducing Medicare's New Coverage for Prescription Drugs
Here are some websites if you need additional help. http://www.medicare.gov/medicarereform/drugbenefit.asp - All the Info on the New Plan http://www.medicare.gov/Subscription/default.asp Medicare Emailing List http://my.medicare.gov/ Main Medicare Portal http://www.medicare.gov/spotlights.asp#medicare2006 Medicare and You, 2006! http://www.medicare.gov/Health/flu.asp Information about Getting Your Flu Shot! http://www.cms.hhs.gov/partnerships/tools/materials/caregiversresources/default.asp

Care-giver Publications or call 1-800-MEDICARE (1-800-633-4227)

BEWARE OF FRAUD AND UNETHICAL PRACTICES!
Quick Facts About Medicare Prescription Drug Coverage and Protecting Your Personal Information

Protect Yourself from Identity Theft and Fraud
Identity theft is a serious crime that happens when someone uses your personal information without your consent to commit fraud or other crimes.
Your personal information can include your name:
*Social Security
*Medicare
*bank account
*credit card numbers
Medicare is working hard to protect you from identity theft. To help protect yourself when dealing with plans and others about Medicare prescription drug coverage:
-Keep all personal information, such as your Medicare number, safe.
-Protect your Medicare number as you would your credit card information.
-Don't give out your personal information until you are sure that a person is working with Medicare and their product is approved by Medicare.
-Know the rules about when someone can ask for your personal information.

Here are some rules from Medicare to help protect you
Medicare Prescription Drug Plans:
- can't begin marketing their products until October 1, 2005.
- can't begin enrolling people with Medicare until November 15, 2005.
- will have this "Medicare-Approved" seal on their materials. People who are really working with Medicare
- can't come to your home uninvited to sell or endorse any Medicare-related product, but they
- can call you about their plan.
- can't enroll you into a drug plan over the telephone unless you call them, or unless you are adding prescription drug coverage to a Medicare Advantage Plan or other Medicare Health Plan you already have.
Note: State Health Insurance Assistance Programs and other local organizations may help you enroll over the telephone.
- can't ask for payment over the telephone or web. The plan must send you a bill if you enroll over the telephone or web.

CENTERS FOR MEDICARE & MEDICAID SERVICES
Publication No. CMS-11065
December 2004
Remember, Medicare doesn't recommend one product over another. Call 1-800-MEDICARE (1-800-633-4227) if you aren't sure about Medicare's rules or if any of these rules appear to be broken. Don't respond to anyone or any material that breaks Medicare rules. Know who you can trust. Most people are honest and want to help you make health care decisions that are best for you. Only give out your personal information to someone you trust or to a doctor or supplier approved by Medicare. Also, make sure that you are present when your personal information is used. You can trust and get help from:
. family and trusted friends
. senior centers and other local organizations working with Medicare
. State Health Insurance Assistance Programs (call 1-800-MEDICARE (1-800-633-4227) or visit www.medicare.gov on the web to get the telephone number)
. 1-800 MEDICARE (1-800-633-4227) (TTY users should call 1-877-486-2048)or
. www.medicare.gov on the web. If you think someone is misusing your personal information, call . 1-800-MEDICARE (1-800-633-4227) (TTY users should call 1-877-486-2048), or
. the Fraud Hotline of the HHS Office of the Inspector General at 1-800-447-8477, or
. the Federal Trade Commission's, ID Theft hotline at 1-877-438-4338 to make a report (TTY users should call 1-866-653-4261).
Note: If you filled out an application for extra help and there is missing information, someone from SSA may contact you to ask for the missing information. They will only ask you for the information that's missing from the application. If you feel like you are in danger for any reason, call your local police department immediately.

If you lose your Medicare card or it's stolen, or if you need a new Social Security card, go to www.socialsecurity.gov on the web or call the Social Security Administration at 1-800-325-0778. TTY users should call 1-800-325-0778.

If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772 or visit www.rrb.gov/default.asp on the web. For more information, about how to protect yourself from identity theft, look at www.consumer.gov/idtheft on the web. CMS Pub. No. 11147 September 2005

Any Medicare beneficiary who suspects fraud should call 1-800-MEDICARE (1-800-633-4227), local State Health Insurance Assistance Program (SHIP) or a local law enforcement agency. Medicare beneficiaries also need to be aware of how to protect themselves against identity theft. CMS has released "Quick Facts About Medicare Prescription Drug Coverage and Protecting Your Personal Information," to help beneficiaries learn some of the key ways they can protect themselves. Fact sheet can be found at : http://www.medicare.gov/Publications/Pubs/pdf/11147.pdf

Anyone with Medicare who finds that someone is inappropriately using their personal information should contact: 1-800-MEDICARE and The Federal Trade Commission's, ID Theft hotline at 1-877-438-4338 to make a report (TTY users should call 1-866-653-4261). Beneficiaries who feel in danger for any reason should call their local police department immediately. For more information about ID theft protection, visit www.consumer.gov/idtheft.

ERROR IN THE "2006 MEDICARE & YOU HANDBOOK"
Where Does the Error Occur?
This notice affects the printed area-specific versions of the "Medicare & You 2006" handbooks, which were mailed in October to people with Medicare. The error occurs in the comparison charts listing the Medicare Prescription Drug Plans, beginning with page 97-A.
Note: The electronic versions of the handbook that will be posted on www.medicare.gov by October 7, 2005 are accurate.

What is the Error?
The last column of the charts is headed "If I Qualify for Extra Help, will My Full Premium be Covered?" For each plan listed, this column should show "Yes" if the plan's premium is at or below the regional benchmark, and a beneficiary who qualifies for the low-income subsidy would pay no premium for this plan. The column should show "No" if the plan's premium is above the regional benchmark and a beneficiary who qualifies for the low-income subsidy would pay some cost toward the premium for this plan. Due to an error, this column lists "Yes" for every plan.

What is the Scope of the Error?
Approximately 60% of the Prescription Drug Plans listed in the handbook should have a "No" in this column. This error does not impact the charts listing Medicare Advantage plans.

Does this Affect Auto-Enrollment? No. People with Medicare who qualify for the low-income subsidy will still be auto-enrolled ONLY into plans where they will incur no premium. The information in the printed handbook would be used only by people who qualify for the subsidy and are considering changing to a plan other than their auto-enrolled plan.

How Can a Person with Medicare Get the Correct Information?
The handbook is just one piece of a very large effort to educate people with Medicare about the new Prescription Drug Coverage. Individuals who qualify for the low-income subsidy and use the Medicare Prescription Drug Plan Finder on www.medicare.gov will be able to see the exact dollar amount of the premium they will pay for any plan. People with Medicare who call 1-800-MEDICARE for assistance will be accessing correct premium information to make accurate comparisons and decisions. Beneficiaries will have many opportunities for personalized counseling in the local community, including outreach targeted to people who qualify for the low-income subsidy. In addition, each organization offering Medicare Prescription Drug Plans will be aware of this issue. Plans must provide correct premium information to individuals who qualify for the low-income subsidy, prior to enrollment. Medicare also has corrected the information in the affected column in the handbooks before posting electronic copies at www.medicare.gov on the web. Copies that will be posted on the web by October 7, 2005 are accurate. In addition, CMS has provided information about the error to all of our outreach and education partners and we have equipped them with information to assist people who ask about plans available to people who qualify for extra help.

We hope you find this information helpful. Please feel free to pass this information along to your groups and anyone who might qualify for the new Prescription Program.
Please contact www.medicare.gov if you have any questions concerning this program.

Alert - Set your VCR!

RSD Featured on Discovery Health's Mystery Diagnosis

October 15, 16 & 17, 2005

December 18 & 23, 2005

For Grace founder Cynthia Toussaint's journey with Reflex Sympathetic Dystrophy will be the focus of an upcoming segment airing on Discovery Health channel's Mystery Diagnosis show.

Told from four different perspectives, this segment will provide an in-depth look into the full RSD experience.

Mystery Diagnosis airs worldwide and will reach 58 million households in the US alone with each broadcast. Wonderful RSD awareness across the globe!

http://health.discovery.com/
Please check your local listings.

Isaac's Nightmare

www.forgrace.org

Living in agony

A success story.

(Published Wednesday, September 28, 2005 10:44:32 AM CDT)
The Janesville Gazette
By Chris Schultz, Gazette Staff

SHOPIERE - Tera Hayward, 17, has a relentless enemy.

The Big Foot High School senior is dogged by a rare condition that causes her excruciating pain.

It is pain severe enough that nerve blocks - shots of powerful local anesthetics-are needed to stop it.

Tera suffers from a condition called Complex Regional Pain Syndrome. Physicians are still not sure what causes it - and while they can mitigate its pain, there's no recognized cure.

Although she's not suffering any pain right now, Tera has to be careful not to get the slightest injury or the syndrome, and its crippling pain, will recur.

Big Foot High School senior Tera Hayward suffers from Complex Regional Pain Syndrome, a rare condition that causes excruciating pain. 'American Idol' judge Paula Abdul has battled through a similar disorder. Hayward isn't currently in pain, but even a slight injury can cause a recurrence.

Tera was first diagnosed with the syndrome when she was 9 years old and has suffered through three bouts with the pain.

According to medical literature, the pain is considered at the top of the pain index - even higher than the pain experienced by people suffering from nonterminal cancer.

Tera has a better description.

"If you were to drain your veins of blood, fill them with lighter fluid, and then light it, you might have an idea of the pain," she said.

Still, Tera is facing up to her enemy. It kept her out of school all last year. But she made up her junior year through tutoring and summer school. This year, Tera walked through the doors of Big Foot High School in Walworth as a senior - and she plans to complete the school year and graduate. She wants to attend Washington University in St. Louis. Her goal is to become a physician. "I want to be a doctor," Tera said. "I want to treat this. "With all of the school I've missed, I could be several grades behind," Tera said. She's not. Perhaps because her parents are teachers, she's fought hard to keep up and maybe forge a little bit ahead.

Her mother, Kim Hayward, is a science teacher at Edison Middle School in Janesville and her father, Ken Hayward, teaches vocational technology at Big Foot High School.

The Haywards live in rural Shopiere, within the Clinton School District. But Tera attends Big Foot as a transfer student.

Tera's bout with the pain syndrome started with a simple childhood accident. She picked up too much firewood and dropped a piece on her foot, breaking her toe. Within 24 hours, Tera's foot turned purple, and it was oddly cold to the touch, Kim said. Tera described the onset of the pain as a cold ache. It didn't stay cold for very long.

The family was living in Tennessee at the time. The doctors there made a mistake. They put Tera's foot in a cast. While that may be the right treatment for a broken bone, patients with Complex Regional Pain Syndrome should not have their limbs constricted, Kim said. The cast caused Tera tremendous pain.

Sometimes people with the syndrome are accused of faking symptoms, Kim said. But Tera was losing sleep. "You don't fake not sleeping," Kim said. It was a podiatrist who first recognized Tera had the syndrome.

At a hospital in Nashville, Tera began years of treatment for an enemy that attacked her from the inside and stole her peace of mind and proper use of her legs and feet. It took four months of treatments to finally chase the pain away. Tera said she was in remission for two years.

"There's no cure for it. You just keep it at bay," she said. Complex Regional Pain Syndrome lurks like a predator, waiting for another opportunity. And it can strike after even a trivial incident.

At age 11, Tera tripped over the family cat and landed on her arm. The pain came back, flooding her right arm with fire from the finger to the shoulder. Kim said the syndrome affects the appearance of the affected area. The skin on Tera's arm turned red and the hairs stood straight up. The skin can be either very hot or cold to the touch. But touching is not recommended.

"You can't get it wet," Tera said. The water causes pain. "You can't put it under the covers," she said. Even the softest sheet causes agony. Even noise can set off or escalate the pain, Tera said.

Again, this attack lasted between three and four months. Pain blocks aren't the only treatment. Once the pain is controlled, the patient needs therapy because the syndrome causes muscles to wither away if they're not kept in motion. Tera said she squeezed tennis balls, learned sign language and did a lot of writing and drawing.

The pain left for five years, but when Tera was starting high school as a freshman, she began to experience low back pain. A benign tumor was found on her spinal column. She went through surgery at UW-Madison in October 2004 to remove the tumor. The operation was a success, but the surgery triggered another bout with the syndrome, Kim said. The onset this time was slow, but it came on nonetheless.

By April, the pain started in earnest. Tera found starting her junior year at Big Foot High School was impossible. "I do want to be here, but I can't be here," Tera said. "School is a privilege. It's been taken away from me.

"Tera is on the 504 plan, a federal program that gives students an extra year to complete a school year. She's had tutoring and does research on the Internet to make up for lost classroom time. "The Internet is my biggest resource," Tera said.

Tera had to complete her entire junior year during the summer. By late August, she was certain she would finish her junior year and be ready to start her senior year this fall. Tera said Big Foot did everything it could to help her complete her junior year. "The students and teachers are very supportive," Tera said.

By August, the Complex Regional Pain Syndrome was going into remission again. Tera can't participate in contact sports. But she is active - when she can be. "I can't live in a plastic bubble," Tera said. "It's just a risk you have to take." Tera takes pain counseling, but she doesn't put much stock in it. Instead, she relies on a matter-of-fact, grit-your-teeth, fight-through-the-pain attitude. "Everyone falls down in life, but you have to get back up," Tera said.

"You have to be an advocate for yourself."

Article on RSD in New Yorker Magazine

The Big Hurt

Issue of 2005-10-10 Posted 2005-10-03

This week in the magazine, Jerome Groopman writes about reflex sympathetic dystrophy, a type of intense chronic pain, and how a better understanding of R.S.D. might help to explain certain fundamental aspects of the nervous system. Here, with Ben Greenman, he discusses the topic.

BEN GREENMAN: What first interested you in R.S.D.?

JEROME GROOPMAN: Several people I know developed it, and they saw a number of physicians until the correct diagnosis was made. Along the way, they were given a lot of misinformation and misdiagnoses. I became intrigued. I didn’t know much about it myself. And, the more I looked into it, the more I realized that it was important. It was not that rare a condition. And thinking about pain in this new way had the potential to give us a window into a new understanding of the central nervous system.

How much is known about pain in general? In medicine, obviously, it’s managed all the time, for surgical procedures and terminal illnesses and everything in between. But pain itself seems poorly understood. Why is one of the most common conditions also one of the most elusive?

I think that, in classic medical education, pain has either been overlooked or disliked. It’s the kind of situation that is often very frustrating to doctors. The therapies are not easy or pleasing. Until recently, it did not have its own specialty. In the past, physicians would just write a prescription for a narcotic and hope that the patient found enough relief not to come back and bother them. A lot of the patients in my article, the ones suffering from R.S.D., would have entered a medical purgatory, where they were largely shunned by the medical establishment. More recently, two things have happened. There’s been increased understanding of the biology of pain, and I talk about that in the article. Also, there are very committed physicians who believe that this is an important clinical issue, and they have begun to devote themselves to the care of these patients.

One of the things about pain that you mention in the article, and that people intuitively understand, is that it’s subjective. When you take a history of a patient’s pain, you have an essentially subjective complaint. Thresholds are different, and there aren’t always visible or measurable symptoms—although, in R.S.D., there is skin-temperature increase and inflammation. The subjectivity of pain must be something that thwarts and frustrates physicians.

I just got off the phone with a close friend who fell yesterday and smashed her arm. Luckily, nothing’s broken, but she has an extraordinary pain threshold. She does not take Novocain when she goes to the dentist, and it’s not because she’s a masochist; it just doesn’t bother her that much.

So is that the kind of person who might, in theory, have a low-lying case of chronic pain?

Well, there are some pains that wouldn’t register with her. But I think that what’s interesting about R.S.D.—and what distinguishes it from any other pain syndromes—is that it can affect anyone. It’s not predicted based on people’s prior pain thresholds. For example, the woman who is the main figure in this week’s piece, whom I call Barbara, is someone who’s very athletic and active. She doesn’t have the “classic pain personality,” which physicians have portrayed in the literature: people who don’t want to work, people who are not motivated, people who are terrible complainers, people who have a little bump and think it’s the end of the world. This is a woman who has been thrown from a horse, fallen down a flight of stairs, torn her hamstring, and hardly complained about any of her injuries. Then R.S.D. came along and affected her the same way it affects everyone—it’s debilitating. So the mystery of this is that the psychological predisposition to reacting to pain doesn’t seem to be determinative.

Can you explain the difference between adaptive and maladaptive pain?

Adaptive pain is pain that assists the body in healing or protects the body. So, classically, you’ll withdraw your hand from a flame, or you’ll have surgery and the area will become inflamed and swollen and painful, and you’ll be forced to rest it, so that healing can occur. It’s either protective or it fosters the natural healing process. Maladaptive pain—and R.S.D. is a severe version of it—is essentially a neurological disease. You develop circuits in the spinal cord and in the brain which are signalling continual pain, despite the fact that there is no painful stimulus. Or you develop circuits in the spinal cord and in the brain in which peripheral nerves—nerves from your fingers or feet or legs, which normally carry innocuous or even pleasant sensations, like a breeze fluttering or a soft touch—now send signals that are interpreted in the brain as being painful. That’s maladaptive. It gives no benefit to you, and actually is extremely destructive.

What are the effects of defining something like R.S.D. as a disease, as a neurological condition in which signals are crossed or distorted?

By focussing on the authentic biology and casting it as a neurological disease, it takes away the negative stigma and elicits not only sympathy but concentrated clinical attention.

The cases cited in the article seem to involve truly excruciating pain. One woman who was a friend of Barbara’s has committed suicide, and Barbara admits that she has considered it. If someone is afflicted with R.S.D. in a foot, would amputating the foot help?

The stump would still be excruciatingly painful.

So the pain remains whether or not the limb does?

Correct.

And the effect seems to be to drive people out of their minds, and out of their lives.

That’s exactly what it does. The only analogy that I can think of is being under constant torture. For people who were in concentration camps or at prisons under Saddam—those kinds of places where every day you are subjected to excruciating pain, with no guarantee that it is ever going to be alleviated—their lives would have become empty, and not only empty but torture.

Traditionally, as you say, pain has been treated with narcotics, and there are often side effects—addiction to painkillers being the most obvious. As you point out in the piece, therapies like nerve blocks are used to treat R.S.D. as it becomes better understood. Are there also cases where old, blunt, and not so efficient therapies are being abused? Or, for that matter, are there crank therapies?

It’s interesting. These people generally don’t have a very high addiction problem, because they don’t have what’s called an “addictive personality.” They have terrible pain, and they use their medicines very judiciously. In fact, a lot of them don’t even want to use their medicines, because they don’t like the side effects. So they’re not psychologically predisposed to addiction. I think there is still a tremendous need for better therapies. As the biology has become better understood, there are drugs emerging that target specific neurotransmitters, specific channels, and so on, which can help these people. The more extreme interventions, with nerve stimulators, for example, are a relatively recent development—in some cases the results are tremendous, and in others the technique doesn’t succeed. I haven’t seen a lot of crank therapies, because there is not much placebo effect here. You tend to see crank therapies proliferate where the placebo effect is profound. But the kind of pain that these patients are having is not amenable to suggestion or emotional state.

Do you have any sense of how common something like R.S.D. is? There seem to be diseases that crop up more and more often—because of the way people live now, or because of environmental conditions. Carpal tunnel is one. Is there any sense of whether R.S.D. belongs in this category?

I wrote a piece for The New Yorker a while ago about fibromyalgia, and how, historically, there have been poorly understood pain syndromes that were related to the introduction of new technology. For example, there was something called railway spine, chronic and disabling injuries sustained as a result of minor railway accidents, often, when railroads were first introduced, in the nineteenth century, and clearly that’s gone. This is different. To me, it was fascinating to trace this back to the Civil War. And I’m sure it antedated that as well. This doesn’t, to my knowledge, have any cultural or sociological overlay.

So this has probably existed with the same prevalence as long as there have been people but has only recently been better classified and understood?

That’s right. And I think there are large numbers of people who aren’t diagnosed. Some of them are fortunate, because in the acute setting, in the initial setting, if you can tolerate the pain to some degree and keep functioning, the nervous system may be able to rewire itself. Other people, unfortunately, who are not diagnosed, who have chronic R.S.D., just go from pillar to post, basically, and suffer terribly.

As this particular syndrome is better understood, is it likely that the medical community will develop a deeper understanding of larger neurological issues?

If you’re asking whether more attention to this will lead to a proliferation of diagnoses, what distinguishes this from other pain syndromes is that there are objective findings. If you look at the limb of a person with R.S.D., it’s not as though someone has carpal tunnel or someone has railway spine and they’re complaining of pain and there are no objective clinical findings. Here, there are really impressive and bizarre clinical findings. You touch the person with cotton and they’re on the ceiling. I hope that one of the consequences of the article will be that people who have this will realize they have it, and physicians like myself, and even specialists who were never formally schooled in this, will be more alert to it. It’ll be on the radar screen, so that patients can be referred to get help by specialists, and also so that the research that’s done on this condition may lead to better treatments