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.
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. ********************************
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:
• 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.
