To whom it may concern:
I am writing to you in
hopes that you will take a few moments and read the following information and help RSD/CRPS patients raise public awareness
of this horrible disease. Below I will share with you Facts or RSD/CRPS, Basics of RSD/CRPS, pictures of implantation devices,
pictures of effected areas of RSD/CRPS patients, my story, support group information, website & organization information,
ways you can help raise awareness.
Facts of RSD/CRPS:
Dystrophy Syndrome (RSD) - also known as Complex Regional Pain Syndrome (CRPS) - is a chronic neurological syndrome characterized
- severe burning pain
- pathological changes in
bone and skin
- excessive sweating
- tissue swelling
- extreme sensitivity to
There are Two Types of
CRPS - Type I and Type II. (Possible 3 - 4 stages)
The best description of
RSD/CRPS is in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path.
The development of RSD/CRPS does not appear to depend on the magnitude of the injury (e.g. a sliver in the finger can trigger
the disease). In fact, the injury may be so slight that the patient may not recall ever having received an injury. For reasons
we do not understand, the sympathetic nervous system seems to assume an abnormal function after an injury. There is no single
laboratory test to diagnose RSD/CRPS. Therefore, the physician must assess and document both subjective complaints (medical
history) and, if present, objective findings (physical examination), in order to support the diagnosis. There is a natural
tendency to rush to the diagnosis of RSD/CRPS with minimal objective findings because early diagnosis is critical. If undiagnosed
and untreated, RSD/CRPS can spread to all extremities, making the rehabilitation process a much more difficult one. If diagnosed
early, physicians can use mobilization of the affected extremity (physical therapy) and sympathetic nerve blocks to cure or
mitigate the disease. If left untreated, RSD/CRPS can become extremely devastating due to permanent deformities and chronic
pain. There are no studies showing that RSD/CRPS affects the patient’s life span. The potential exists for long-term
financial consequences. At an advanced state of the illness, patients may have significant psychosocial and psychiatric problems;
they may have dependency on narcotics and may be completely incapacitated by the disease. The treatment of patients with advanced
RSD is a challenging and time-consuming task.
of RSD/CRPS & statements from RSD/CRPS patients:
is a debilitating disease which affects an estimated 6-7 million people and numbers are rising. Although the number
of RSD victims continues to rise, research and treatments are virtually non-existent!! It is now believed that for every Aids
patient in America, there are atleast 10 times as many RSD patients!
patients are often told that the pain is in their head and is a physcological problem which this is not true. Many are told
they are looking for sympathy or attention, again not true. All RSD patients are not looking for any sympathy; all they are
looking for is anyone to understand them such as family, friends and their treating doctors. It is known that if there is
a lack of physical evidence then it is not believed. Some RSD patients have no physical signs of their pain until later stages.
This is why it is believed to be in their head.
patients tend to lose our jobs due to the disease and this is often followed by losing everything that means anything to them
such as their homes, possessions and even their families!! Very far & few between does the RSD patient have support
of loved ones because of lack of understanding and or knowing their lives will never be the same again. The ones who do are
- Many of RSD patients
cannot find doctors who know how to treat RSD. If an RSD patient finds a doctor who treats RSD, often they are guinea pigs
until they find the appropriate treatment as it is been found that not one person can be treated successfully as another.
Not one patient can be treated the same nor are the symptoms. RSD is presently not being taught in the medical schools because
it is known as “The mystery disease and complicated
is a chronic disease which affects the nerves, muscles, skin, bones, and even the internal organs of one's body. Advanced
stages can be called Full body RSD, and or have mirroring affects where original affected limb goes to the opposite side and
has the same affect. Some instances of RSD problems are with loud noises, headaches, sight & hearing problems, lack of
interests in sexual activity and or loss of, unable to wear clothing or have anyone touch the affected area, even wind causing
extreme pain. Many RSD patients suffer from other effects from RSD/CRPS such as constant burning pain, dizzy spells, black
outs, mood swings, depression, insomnia, lack of energy, memory problems, and thoughts of suicide. Many RSD patients have
or will have unsuccessful nerve blocks, physical therapy, surgeries, implantation of medical devices (see
pictures below). The finally given prescriptions for Opiod medications and told to live with it. Too
many RSD patients go misdiagnosed and made to suffer because of lack of treatment which causes their pain and symptoms to
get worse. It causes many of them to be diagnosed too late. This leads to devastating problems with RSD.
& Spinal Cord Stimulator:
Graph of Mechanism of RSD:
Sample picture of a Lumbar Sympathetic Block:
The Mc Gill Pain Index shows that RSD “Causalgia” is the most painful disease even
more painful then Cancer pain.
(Mc Gill Pain Index)
online support groups:
Many are very lucky
to find local support groups and online support groups which supplies RSD patients and their caregivers and loved ones with
an array of support, encouragement and information. Their amazed that there are others out their like them and people who
really understand them! Many say they could not get through this horrible disease without them. Many have benefit from support
groups local and online as they get a lot of strength, understanding, information and friendship through meeting many other
The support groups
that have helped me are:
Please feel free
to visit their web site to see what they have to offer!!
- The lack of public awareness
and medical knowledge causes an alarming number of RSD patients to be misdiagnosed & under-treated and unfairly accused
of wanting sympathy & attention, when all we want is fairness, support, understanding and a cure!
- We have to fight to get
the coverage we deserve! Many RSD patients and caregivers have contacted the local and national media with little success.
Having contacted TV talk show hosts in huge numbers, we are ignored! Why we ask, basically it is because there is no success
story involved to do such shows. Well IF the media and talk shows would help raise awareness we would have more success stories
because we would be able to get this disease treated early and treated successfully and in hopes of raising more money for
a cure, but we need everyone’s help to achieve this goal!
- RSD Patients need support,
understanding and changes at all levels of social security, workman's comp, and insurance companies as well as the medical
community and help from our governmental agencies and the media. Many RSD patients have to fight with what little strength
they have to get any benefits to get treatment for RSD as well as finding good RSD doctors to treat them appropriately. RSD
patients are told to remain stress free as it exacerbates pain.
- Most people can't understand
why RSD patients are constantly in pain can't work and barely function or begin to understand how RSD has totally changed
their lives. It takes away their dreams, jobs, family, friends, social lives and their dignity.
Story Dealing with RSD/CRPS
How you can help:
for more awareness of RSD/CRPS and you can help now.
- Contact local and national
- Contact local and national
- Contact medical professionals
- Do fundraisers to raise
money for a cure
- Handout information, brochures,
pamphlets, business cards
- Start or join a local
- Start or join an online
- Contact local stores to
do a bake sale
- Contact local officials
to set up a table at state and county
- Talk about RSD/CRPS at
anytime with anyone
- Sign petitions to get
- Contact RSD/CRPS organizations
and ask how you can help them
Thank you for taking the
time to read this awareness letter and in hopes that we, the RSD/CRPS community, has touched your heart enough to help make
our lives a bit easier and help save a new RSD patient from having to suffer like the millions that already do.
(Your Name Goes Here)
awareness letter was created by Shari M. Utter : © 2009 Copyright All Rights Reserved