CENTRAL PAIN SYNDROME

Lets begin with what is "post stroke pain".......about 10%-15% of all strokes
will end up with this long term affect. Most Brainstem strokes result in this
type of pain. The following is the definition we use to explain these many
sensations to strokees and to the professionals we often need to educate.

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http://www.centralpain.org
CENTRAL PAIN SYNDROME, A DEFINITION

Sinus headaches are a pain. Backaches, toothaches, sprains, strains all cause
pain of some kind, and at some level. We have all experienced some pain at
one time or another in our lives. Some people swear by acetaminophen, others
Ibuprofen, NSAIDS of different forms, all the way up to the big guns of
Narcotics. Most of the pains mentioned previously go away at some point.

But for many of us, there is another pain, one with various names, that stays
with us almost always: Its called Central Pain Syndrome, CPS for short.

Also known as Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Posterior
Thalamic Syndrome, Retrolenticular Syndrome, Central Post-Stroke Syndrome, and
often found under Neuropathic Pain. You may have heard it referred to by any of
these names, or perhaps even something else.

Central Pain Syndrome is a neurological condition, meaning it stays with us,
can affect us all differently, in different places on our bodies, and at
different levels of pain and suffering.  It is also extremely difficult to
diagnose, sometimes sending the patient to many doctors to find one that
believes
them, and/or has even heard of and dealt with and treated this savage pain.

Caused by damage to the central nervous system by stroke, it also includes
injury to the  thalamus; brainstem; spinal cord injury; MS;  reaction to
medications; TBI injuries;  and many, many  other conditions.

It is a steady, sometimes deep burning, aching, cutting, tearing sensation. 
CPS may be mixed with sudden, excruciating shots of pain. It is often mixed
with other distracting sensations like bone cold, tingling, a "pins and needles"
effect, a ballooning sensation, throbbing, and the feeling of a dental probe
on a raw nerve.

Intense skin reactions can accompany these symptoms, such as burning,
stretching, tightness, itching, or a crawling feeling. CPS can be irritated by
any
light touch, sometimes just the feel of cloth on skin, which can making dressing
an ordeal. As can the touch of a sheet or blanket. Sometimes the touch of a
loved one, or family member, in fun, or love, may often be a way to overwhelm
the brain with the pain from CPS. Gut pain, stomach  nausea and vomiting can be
a part of CPS. Light sensitivity is  also a common  problem.

Sometimes the hands and feet are affected with a numbness that is painful,
and does not offer any relief, only adding to the pain. It is often aggravated
by temperature changes, particularly cold/cool air  barely touching the skin.

CPS  can begin from day one of the stroke or can take months, even years,
after a stroke to make it's appearance, well after the patient thinks they are
well on the road to recovery. It can often cause depression, anxiety, anger and
frustration.

In some cases, when a person rates the pain as a 9 or 10 on a pain scale, and
there seems to be no relief in sight, no hope or understanding with support,
they may even come to feel that suicide is the only way out. In that way
Central Pain Syndrome can be a life threatening condition.

We have determined the following things that can  be called TRIGGERS to start
or increase one's sensations and pain levels: Movement; daily acitivity; ROM
exercising; exposure to sun; cold; breezes; AC;  barometer changes;
weather..hot and cold; rain; snow; sun flare activity; real pain or swelling;
stress;
anger; depression; touches of another person; blanket; clothes; splints;
tiredness; "sudden movements".. ie..Yawning and other reflexive involuntary
movements
like sneezing,  being startled, fear; and  vibrations as from riding in car.
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Most CPS strokees do not have all these sensations and pains going on at once
in their life. However CPS is an always changing affect. It usually gets
worse as time goes by, unless the right combinations of medications and methods
of
treatment for you can be found. This takes just one "kind" Doctor who is
willing to first "believe you". One who is willing to learn what can be tried
and
hang in there through all the ups and downs of this condition.  Many
neurologists do not have a great understanding of CPS so don't expect them to be
"THE"
doctor that is going to help you. Sometimes just your personal MD. is the
right ticket.....or  Psychiatrists
Anesthisiologist AND Rheumatologist  could be the one.

There is hope, the research coming along  looks like it might be more helpful
to CPS in the past. For now the best things to do are:

• Don't fight this alone. Join the online email group for support and
information. Reach out. <<http://groups.yahoo.com/group/CPS_ALLIANCE>>

• Find a "caring" doctor, any doctor that is willing to learn and to help. Do
not continue frustrating yourself with  those  doctors that do not believe
you or are unwilling to do their best to help you. Once a knowledgeable, (and
caring) physician  is found,  treatment of CPS usually begins with a long
journey  to finding the best combination of medications for each  individual
(effective therapy with a single agent is rare.) To achieve any  level of
success,
both the treating physician and patient must recognize and accept that this will
be a long and ongoing  process. Medications must be added one at a time, with
the dosing gradually increased over weeks and  judged for efficacy and
tolerability at  each step. Some medication side effects can  decrease, to some
extent, given time. Full analgesic efficacy can literally take months to
accomplish. This makes it critical that both the treating  physician and patient
recognize that treating CPS is an long and ongoing process.

• Learn all you can about CPS by going online to
<<http://www.painonline.org>>. This is the website you will share with any
professional who is willing to
learn about central pain syndrome. Copy many pages of this informational site
and if you have to pay for a sesson with the doctor as he/she reads the
information while you sit there it is well worth that money. Make sure
information
about CPS is in your files in the doctor's office.

• Stay as stress free as possible. Stress causes causes more pain.

• Learn  to use coping skills....meditation; visualization; music;
self-hypnosis; yoga; biofeedback; diversion; distraction; keep the mind busy
with loved
activities if possible, focus must be shifted to anything other than the pain.
Know your physical limits and plan life around them as much as possible.

• Understanding, patience and perseverance are required by
affected individuals and their loved ones.  It must be remembered that while
CPS often dominates the world and function of the affected individuals because
of the sheer enormity of the pain involved, it is not an isolated  condition.
It is an "add on" to those who already are trying to cope  with often
dramatic changes in personal living caused by the conditions.... such as stroke,
that
caused the CPS.

• Learning to live with CPS is difficult,  but it can be done.

• Do not give up hope! There is hope to help control this stroke affect. It
is such a big help to have a "term" for what you are living through, as is
having friends who can give support and information. Our email group keeps a
running list of what meds  that can help and other methods of lowering the
suffering.

We care about you.

Love, Light, Rainbows
and Blessings
Mary Simpson
centralpain101@aol.com
http://groups.yahoo.com/group/CPS_ALLIANCE







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