HI MY HEART GOES OUT TO HIM AND EVEN MORE TO YOU.
I STROKED 16 YRS AGO AND A COUPLE THINGS WERE BROUGHT TO MIND WHEN I WAS READING YOUR UPDATES. FIRST IT IS ALMOST IMPOSSIBLE TO FISH ONE HANDED [ I HAD NO LUCK EITHER] ALTHO THERE IS A CONTRAPTION THAT IS SUPPOSE TO HELP REPLACE THE OTHER HAND. I THINK ITS AT LEAST A GOOD SIGN THAT HE GAVE IT A TRY BUT VERY FRUSTRATING FOR HIM WHEN HE FOUND IT TOO HARD TO ACCOMPLISH. ITS A SHAME HE CAN NOT GET AROUND. BEING ONE HANDED IS NOT SUCH A BIG DEAL AS NOT HAVING THE ABILITY TO MOVE AROUND AT WILL.
I WANTED YOU TO READ UP ON HIS PAIN. HERE IS THE CENTRAL PAIN SYNDROME'S CURRENT DEFINITION .... ONCE YOU READ THIS YOU WILL BE AWARE THAT ANY MOVEMENT WILL TRIGGER MORE PAIN SO THATS WHY HE JUST WANTS TO LAY THERE. YOU NEED TO MAKE SURE ANY THERAPY OR ACTIVITY SHOULD BE FOLLOWING HIS MEDS SO THEY CAN HELP KEEP HIM COMFORTABLE AND AFTER TOO, HE WILL NEED SOME.
I AM GLAD HE IS AROUND THE 3 YEAR OLD ...I AM SURE SHE BRIGHTEN HIS DAY.....BUT ITS TIME YOU STOOD UP TO FAMILY AND TOLD THEM THEY TOO NEED TO BE AROUND TO HELP YOU OUT. I KNOW HOW HARD IT IS TO CAREGIVE ALONE. A COUPLE YEARS AGO I WAS MY 91 YR OLD MOM'S ONLY 24/7 CAREGIVER. YOU NEED TO MAKE SURE YOU ARE GETTING ENOUGH SLEEP. AND REST. ASK PEOPLE AT CHURCH TO HELP IF YOU CAN. OR LOOK INTO SOMEONE BEING HIRED TO COME HELP TAKE CARE OF THE BATHING ETC. ONE NOTE ABOUT THAT. SHOWERS ALSO HURT CENTRAL PAIN SO HE MIGHT LIKE IT BETTER IF IT WAS MORE GENTLE IF YOU CAN. HOWEVER LIGHT TOUCH HURTS MORE THEN FIRM PRESSURE SO PERHAPS THE WATER IF ALREADY TOO GENTLE. YOU SOUND LIKE YOU CAN COMMUNICATE SOME WITH HIM. ADDED APHASIA ON TOP OF THE CPS PAIN MUST BE SOOOO HARD ON HIM. AND YOU.
HERE IS THE DEFINITION. DO MAKE COPIES FOR ALL WHO COME IN CONTACT WITH HIM. SO THEY CAN BE AWARE OF WHAT NOT TO DO.
BLESS YOU FOR BEING HIS ANGEL. HAVING BEEN ON BOTH SIDES OF AS STROKEE AND A CAREGIVER I WISH YOU BOTH MORE HELP AND PEACE.
FOUNDER OF CENTRAL PAIN SYNDROME ALLIANCE
CENTRAL PAIN SYNDROME
A neuropathic pain with various names.....In an effort to get everyone on
the same page term we use is
Central Pain Syndrome
We will often use "CPS" for short.
Synonyms: Also known as
Central Post-Stroke Syndrome
Posterior Thalamic Syndrome
Thalamic Hyperesthetic Anesthesia
Thalamic Pain Syndrome
Central Pain Syndrome is a neurological condition.
24/7 Sensations can affect us all differently, in different places on our
bodies, and at different levels of pain and suffering.
Extremely difficult to diagnose.
Often sending the patient to many doctors to find one that believes in
Finding a doctor who is willing to treat and work to find relief for the
person that suffers with this savage pain becomes a miracle in the mind of
those that suffer.
Central pain syndrome occurs because of injury to central nervous system...
CPS can be caused by stroke, multiple sclerosis, epilepsy, Parkinson´s
disease, toxins, tumors and trauma to brain or spinal cord, any diseases that
eventually reach the central nervous system.
It can be a steady, sometimes deep burning, aching, cutting, tearing,
pressing, lacerating mixture of pain sensation.
Pain may be moderate to severe in intensity.
CPS may be described
as weird sensations like Burning: "A chemical, not a purely physical burn"
, "bone cold", "wet" sensations, tingling, a "pins and needles", a "
ballooning" sensation, throbbing, 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 aggravated by any light touch such as the feel of cloth on skin
making dressing an ordeal, as can the touch of a sheet or blanket.
The touch of a loved one, may overwhelm the brain with the pain from CPS.
Gut pain, stomach nausea and vomiting can be a part of CPS.
The hands, feet, head, and trunk can be affected with a numbness that is
painful, and does not offer any relief, only adding to the pain.
CPS can begin from day one of the stroke/injury or can take months, even
years to make it's appearance. Central Pain Syndrome can be a life
It can often cause depression, anxiety, anger, frustration and
When a person rates the pain as a 9 or 10 on a pain scale, and there seems
to be no relief in sight, with no hope or understanding or support from
family and professionals, they may even come to feel that suicide is the only
Triggers and Sensitivity reactions
Stress, anger, depression.
Movement, daily activity, ROM exercising, tiredness.
Exposure to sun, rain, cold, snow, breezes, AC, drafts, unseen sun flare
activity, barometer changes.
Environments of warmer and cooler from the particular person´s comfort
Added pain or swelling.
Light touches of another person, blanket, clothes, splints.
Yawning and other reflexive involuntary movements such as sneezing, being
startled, loud noises, bright lights and even vibrations as from riding in a
Light sensitivity for the eyes,
noise sensitivity for the ears can be triggers for higher pain levels.
7 Types of pain sensations
Any or all of these pain types can overlap. A person could have one or all
of these that can come and go as time passes.
- Burning dysesthesia:
A mixture of pain sensations in which persistent light
touch is perceived as a thermal sensation. There are four overlapping
"A chemical, not a purely physical burn"; "A mentholated burning"; burning
it up with fire and acid".
"Like touching dry ice"; "bone" cold.
Wet and uncomfortable underneath the burning."
Motor or Kinesthetic Dysesthesia:
A feeling of cramping and contraction
associated with burning. "A terrible fatigue in my muscles, "A feeling of
drawing, pulling, crushing."
Heightened response to a noxious stimulus.
Pain from a very mild stimulus. Can also describe referred pain.
Can relate to touch, location, temperature or muscle loading.
"Light touch from clothing becomes unbearable after a few minutes,
like an awful sunburn"; "Paper laid on the legs begins to burn unbearably
after a minute or so."
Touching the face might show up as burning on the outside of the forearm.
Sitting long enough for the skin to burn can become burning out to the side
on the legs
Picking up a warm drink, it feels hot in the hand. Warm ambient
temperature sensitizes the skin so that all the other pain features appear
Movement makes the body unbearably sore. The day after exercise, the body
might have awful feelings of lactic acid buildup. Lying in bed can feel like
sleeping on rocks.
Shooting or 5. Lacerating:
Sharp stabbing pains with an electrical quality.
A very common type in which circulation feels compromised. The feeling of
pins and needles in parts of the body.
Feeling of fullness, burning, cramping, nausea or distention.
Central Pain Syndrome
can require a multidisciplinary team of pain specialists.
Anesthesiologists, neurologists and neurosurgeons, rheumatologists,
psychiatrists, physiatrists, family doctors, nurses, physical therapists,
acupuncturists, massage therapists, and chiropractors all
have different methods of treating chronic pain.
www.painonline.com for more detailed infomation