Depend on Yourself! Be an Informed Patient!

I have been searching recently for alternative treatments/therapies to ease the pain caused by my RSD (Reflex Sympathetic Dystrophy) and other conditions I live with on a daily basis. I don't expect every ache and pain to disappear. I'm not that unrealistic.

However, I have made up my mind to live my life using as many "alternative" therapies as I can that do not involve multiple pain medications. There is a whole breed of doctors who believe in medication to solve every issue. Some of the medications I had been taking for years have caused permanent amnesia. A side effect...that's what they call it. How in the world could a person know they were slowly mentally slipping away if they had amnesia? If it was not for an emergency trip to the hospital, due to a reaction to some medication, I may have never found out.

Because they cannot cure RSD, they don't even try to treat it. I have had several doctors try to talk me into amputating my right hand (the original RSD site) to prevent it from spreading or so they said. It is a good thing my husband always stays with me, in the room, during all my office visits. With my mind so muddled and confused from medications, I had begun to believe that may be the answer. If it wasn't for my husband questioning the logic of their "remedy", I could have made a big mistake! I believe they wanted to amputate what they (the doctors) perceived the problem was by just cutting it off! Their idea of a 'cure" so they can feel they did their job by fixing me!

That is not a life. After 5 yrs. of numerous doctors of every specialty, physical therapists that do NOT know how to treat RSD (but claim they do). You get the picture. Enough is enough!

"Due to the incurable nature of RSD and my neuropathy, I need to find something I can live with forever that does not destroy my "quality of life".

Pallative Care looks very interesting and promising. I am surprised it is not utilized especially for chronic conditions like RSD. But, I have a feeling it has to do with cost. This is the first of several on Pallative Care that I will be posting. Please leave a comment and let me know your thoughts!

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What is Palliative Care

Definition watch video

Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness.

Palliative care is not dependent on prognosis and can be delivered at the same time as treatment that is meant to cure you. The goal is to relieve suffering and provide the best possible quality of life for patients and their families.

Ensures quality of life

Palliative care is not a one-size-fits-all approach. Patients have a range of diseases and respond differently to treatment options. A key benefit of palliative care is that it customizes treatment to meet the individual needs of each patient.

Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps patients gain the strength to carry on with daily life. It improves their ability to tolerate medical treatments. And it helps them better understand their choices for care. Overall, palliative care offers patients the best possible quality of life during their illness.

Palliative care benefits both patients and their families. Along with symptom management, communication and support for the family are the main goals. The team helps patients and families make medical decisions and choose treatments that are in line with their goals.

Different from hospicewatch video

Palliative care is NOT the same as hospice care. Palliative care may be provided at any time during a person`s illness, even from the time of diagnosis. And, it may be given at the same time as curative treatment.

Hospice care always provides palliative care. However, it is focused on terminally ill patients-people who no longer seek treatments to cure them and who are expected to live for about six months or less.

Provided by a team

Usually a team of experts, including palliative care doctors, nurses and social workers, provides this type of care. Chaplains, massage therapists, pharmacists, nutritionists and others might also be part of the team. Typically, you get non-hospice palliative care in the hospital through a palliative care program. Working in partnership with your primary doctor, the palliative care team provides:

• Expert treatment of pain and other symptoms
• Close, clear communication
• Help navigating the healthcare system
• Guidance with difficult and complex treatment choices
• Detailed practical information and assistance
• Emotional and spiritual support for you and your family

Source: www.GetPalliativeCare.org.

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FDA Mandates Tougher Warnings for Pain Pills

FDA Mandates:

Tougher Warnings for Pain Pills

TUESDAY, July 7 -- Concerns about the possibility of fatal overdoses led U.S. health officials Tuesday to take several steps to limit the risk of using pain medications containing propoxyphene, including Darvon and Darvocet.

Manufacturers must strengthen the labels of propoxyphene-containing products by adding boxed warnings that emphasize the potential for overdose and developing medication guides to be given to each person filling or refilling a prescription.

The manufacturers must also conduct a new safety study to assess unanswered questions, such as how propoxyphene affects the heart when taken at higher-than-recommended doses, Dr. Janet Woodcock, director of the U.S. Food and Drug Administration's Center for Drug Evaluation and Research, said during a news conference.

The FDA is also working with several health-care organizations to collect additional safety data on these products, Woodcock said, adding that "the data we accumulate could result in additional regulatory action."

Woodcock also announced that the FDA has denied a petition from the consumer advocacy group Public Citizen asking for a phased withdrawal of products containing propoxyphene.

"The reason for the denial is that FDA has determined that propoxyphene is an acceptable option for relief of mild-to-moderate pain when taken as directed," she said. "Moreover, FDA recognizes that other options clinicians might have for pain management come with their own safety concerns".

Propoxyphene-containing products have been linked to fatal overdoses, FDA officials said. Between 1959 and 2005, 91 deaths attributed to an overdose of these products have been recorded in the adverse-events database, said Dr. Gerald Dal Pan, head of the FDA's office of surveillance and epidemiology.

But that database would not necessarily register information on deliberate overdosing, Woodcock said.

Last month, European regulators called for the withdrawal of dextropropoxyphene from the market because people taking the 50-year-old drug have been dying from overdoses.

Dextropropoxyphene, which is called propoxyphene in the United States, is an opioid widely used to treat mild to moderate pain. It was first introduced in the United States in 1957 under the brand name Darvon and is marketed today by a wide number of generic drug makers.

Last week, an FDA advisory panel recommended that the popular prescription painkillers Vicodin and Percocet, which combine acetaminophen with an opiate narcotic, be banned.

Darvocet contains acetaminophen.

More information

The U.S. Food and Drug Administration has more on propoxyphene.

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From the desk of thematrix777:

For all chronic pain patients, please contact your doctor and discuss these new FDA changes. Do not wait until it is too late! We all manage our RSD, CRPS and other pain issues using several methods, including medication for the pain.

Please pass this information along to anyone that may not be aware of this new mandate!

Wishing everyone a low pain day!

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Sparta woman's disease causes chronic pain

From the desk of thematrix777:

I was feeling so positive this morning, I wanted to post an uplifting story of a very brave, courageous woman, who despite living with RSD continues to live a full life.

By SETH AUGENSTEIN
saugenstein@njherald.com
NJ Herald

SPARTA - A burning pain shoots up the arm and shoulder of Doreen Berg.

She describes it as sticking a finger in a electrical sop the arm and shocket, and then lighting a fingertip on fire.

The pain's not a single, senselessly self-inflicted injury; it's an everyday, chronic occurrence for Berg in the past four years.

In January 2005, Berg slipped on black ice, upending herself, tearing her rotator cuff and leaving her bicep "hanging by a thread." She had the surgeries to repair what had ripped in her body, and she worked at recovery. The muscles healed, but the true recovery never came.

"After the surgery I was not getting better - and the pain was getting worse," she said.

The former aerobics instructor eventually was diagnosed with reflex sympathetic dystrophy syndrome, or RSD. She had never even heard of the affliction, and didn't understand its full import until she looked up the complex-sounding symptoms online, and until she began to feel the characteristic, burning pain of RSD.

The syndrome is not completely medically understood. It's basically a malfunction of the nervous system. Most people unlucky enough to have Berg's injury will feel pain, but the nerves eventually will stop flashing pain signals to the brain once the healing process is finished. In RSD patients, they don't, and doctors don't know exactly why.

Essentially, Berg continues to feel the effects of her fall four-plus years ago.

According to the Reflex Sympathetic Dystrophy Syndrome Association, any number between 200,000 and 1.2 million Americans suffer from the condition - and may follow as many as 5 percent of all nerve injuries. The syndrome even can follow a simple ankle sprain. Often, it goes undetected for a painfully long time; people with the disease see an average of five physicians before they are diagnosed.

Berg's injuries were more serious than a routine sprain, but they were wounds that, given time, normally heal enough to avoid constant, lingering pain - at least when the right steps toward healing are taken.

She's had several procedures - removing scar tissue from her shoulder, 16 separate injections in the sensitive nervous system locus of her stellate ganglion, a bicep transfer to strengthen her tendons, ongoing infusions of ketamine - a strong tranquilizer - every six weeks. Simple balms and ointments do little but distract from the constant transmission of burning pain. A litany of medications have done nothing to dull the relentless pain. "I've been on and off nearly every medication you can think of," she said.

Of course, she also keeps active as much as possible. Although she needs some help with household chores, most notably vacuuming and mopping, she keeps pushing her body to its maximum effectiveness. Berg also walks at least six miles each day.

She's also taking her daily walk for the greater cause, as well. On June 28, she will be a part of the Achilles Walk for Hope and Possibility in Central Park for the second year in a row. She will walk the five miles to raise money for various causes, perhaps the closest to her heart being the Reflex Sympathetic Dystrophy Syndrome Association and its push for a cure to the baffling disease.

In the meantime, the daily pain continues for Berg. She continues to work part-time at a doctor's office. This week she departed for Northwestern Memorial Hospital's pain clinic in Chicago. She's applying for a month-long boot camp of sorts plotted to help people cope with unrelenting pain without the crutch of medications. Berg said she's hopeful about what the future holds, including the possibility of a cure.

"I always say, I've got RSD, but RSD doesn't have me," she said.

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APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!

To: All individuals and organizations who care

about access to pain care in America.

URGENT CALL TO ACTION!

The Federal Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.

The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.

ACTION REQUESTED

Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.

Please review the following to assist in your letter writing and to provide further information on the issue:

• Frequently Asked Questions
• Risk Evaluation and Mitigation Strategy (REMS) Consumer Talking Points
• American Pain Foundation's Position Statement on REMS
• American Pain Foundation’s Recommendations on REMS

Click here to go directly to the FDA comment submission page to submit your letter electronically or mail your letters to:

Division of Dockets Management (HFA305)
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852

Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter to advocacy@painfoundation.org so we can also have an opportunity to hear your commentary.

Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.

• Mark Maginn
• Carolyn Noel
• Teresa Shaffer
• Mary Vargas

FDA’s REMS Information

THANK YOU FOR SUBMITTING YOUR LETTER

AND

ALLOWING YOUR VOICE TO BE HEARD!

Sincerely,

American Pain Foundation

© 2002 - 2006 American Pain Foundation
201 North Charles Street, Suite 710, Baltimore, Maryland 21201-4111
A 501(c)3 nonprofit organization.

From the desk of thematrix777:

As most of my readers know, I myself am a sufferer of chronic pain. I have Reflex Sympathetic Dystrophy (RSD), neuropathy, and inoperable back issues. Although I use many types of therapy to manage my pain, there are times when only medication makes my life bearable. My only other option available to me for my hand is amputation which I refuse to consider.

RSD is a chronic, progressive, incureable and extremely painful disease. The same with neuropathy.

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Study Finds That Rents for Modest Studio and 1-Bedroom Housing Units Are Higher Than Monthly Income or People With Disabilities‏

CONTACT: National Low Income Housing Coalition
Taylor Materio, Communications Associate
taylor@nlihc.org
Ph. 202-662-1530 x. 227

Study Finds That Rents for a Modest Studio and 1-Bedroom Housing Unit

Are Higher Than Monthly Income For People With Disabilities

TAC and CCD Housing Task Force release new study documenting extreme housing affordability crisis for the most vulnerable people with disabilities

WASHINGTON-April 13, 2009

Across the United States in 2008, people with disabilities with the lowest incomes faced an extreme housing affordability crisis as rents for moderately priced studio and one-bedroom apartments soared above their entire monthly income. The national average rent for a one-bedroom unit climbed to $749 per month in 2008-higher than $667, the average monthly income of over 4 million people with disabilities.

These shocking statistics are some of the important findings included in Priced Out in 2008-a study of the severe housing affordability problems of people with disabilities who must survive on incomes far below the federal poverty line.

The study compares the federal Supplemental Security Income (SSI) payments of people with serious and long-term disabilities to U.S. Department of Housing and Urban Development (HUD) Fair Market Rents for modestly priced rental units.

Priced Out is published every two years by the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force to shine a spotlight on our nation's most compelling - and least understood-housing affordability crisis.

In 2008, 219 housing market areas across 41 states had modest one-bedroom rents that exceeded 100 percent of monthly SSI, including 25 communities with rents over 150 percent. Between 2006-2008, the number of market areas with modest rents higher than SSI rose from 164 to 219-a 34 percent increase.

For the first time, there were 3 housing market areas - Honolulu (HI), Columbia City (MD), and Nantucket County (MA)-where SSI recipients needed to spend over 200 percent of their income for a modest 1-bedroom housing unit-not only an impossibility, but absurd.

Perhaps the most shocking revelation in Priced Out in 2008 is the precipitous and relentless decline in housing affordability for SSI recipients since 1998 when the first edition of Priced Out was developed.

The amount of monthly SSI income needed to rent a modest one-bedroom unit has risen an astonishing 62 percent from 69 percent of SSI in 1998 to 112.1 percent of SSI in 2008. The root cause of the nation's most severe-and most hidden-housing crisis is clearly revealed in the painful statistics included in the 2008 edition of Priced Out.

As stated by Congressman Barney Frank in the Foreword to Priced Out,

"The lack of adequate housing is a serious obstacle to a decent life for anyone. It can be particularly troublesome for people dealing with disabilities, for whom the physical and emotional stress of a lack of decent shelter are added burdens for people already doing their best to deal with difficulty."

Discretionary state SSI supplements provided by states are not the solution to the housing affordability problems experienced by people with disabilities living on SSI payments.

Even in the State of Alaska-which had the highest state SSI supplement in 2008 of $362 and a total monthly SSI payment of $999-people with disabilities receiving SSI still needed to pay 80.6% of their monthly income to rent a modest one-bedroom unit.

While some progress has been made by Federal officials responding to creating additional affordable housing resources, a bolder action is essential to inaugurate a new era in housing policy that places the housing needs of people with disabilities within the mainstream of national housing policy. TAC and the CCD Housing Task Force urge the federal government to take the following actions:

• Enact Section 811 legislation that will create at least 5,000 new units of permanent supportive housing each year.
• Provide 10,000 new Housing Choice Vouchers for People with Disabilities in HUD's annual budget.
• Support the Administration's proposal to appropriate at least $1 billion in funding for the National Affordable Housing Trust Fund.
• Remove Barriers to Permanent Supportive Housing in the LIHTC Program.
• Facilitate a Coordinated Disability Housing Policy Across the Federal Government.
• Reinvigorate Fair Housing Enforcement.

By implementing these recommendations, the federal government will send a powerful message of inclusion to state and local communities, along with the housing resources necessary to finally begin to achieve the vision of community integration for people with disabilities first articulated almost 20 years ago through the ADA.

A copy of Priced Out in 2008 can be found online at http://www.tacinc.org/pubs/pricedout/2008.html.

For more information about Priced Out, please contact Emily Cooper at ecooper@tacinc.org or call (617) 266-5657 x123.

The National Low Income Housing Coalition is dedicated solely to ending America's affordable housing crisis. Established in 1974 by Cushing N. Dolbeare, NLIHC educates, organizes and advocates to ensure decent, affordable housing within healthy neighborhoods for everyone.

NLIHC provides up-to-date information, formulates policy and educates the public on housing needs and the strategies for solutions.

http://rsds.org/5/news/2009/April/NLIHC_30_178.html




From the Desk of thematrix777:

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BAD RSD STUFF !

"After 5 years of doing nothing except medications, my OLD pain management doctor gave me a referral to see a Reflex Sympathetic Dystrophy specialist.

one of my new pain managements doctors wondered what a Trigger Point injection might do".

The rest is history..................I have already written three (3) posts on the results of that one injection.

Let's go back to my first pain management doctor, (May, 2005). He did 5 stellate ganglion blocks SGB's in the past and he figured since they didn't work, neither would this.....duh..............

you would think they would have least TRIED ONE!

But no, that doctor in his ignorance, let me suffer for FIVE more YEARS!

Within 5 minutes, the injection restored the circulation in my right hand!!!
NO MORE COLD, NO MORE SENSITIVITY, NO MORE PAIN....

My doctor, Dr. Kenneth Hampar, M.D., said it was similar to a wall outlet that had just been turned on. My hand almost buzzed with circulation!

I was so happy, I cried like a baby. He looked puzzled and my husband had to explain that I hadn't been able to use the right hand in over 5 years and that they were tears of joy.........

I only needed the one shot so far because it never "wore off". Now my entire body has got better circulation and they have started to lower my medications because I don't need as many.

Yes, I still have major back problems and I can't walk. I still have RSD in several parts of my body.

IT IS NO CURE FOR RSD! But it sure has improved my "quality of life" and that's enough right now!

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