Chris DeWald | Central pain syndrome
November 6, 2009 by afp
Filed under *Blogs-Commentary
Let me introduce you to central pain syndrome, a.k.a. CPS. This is a real nasty side effect from strokes and brain injuries. There are other causes of CPS, but let me shed some insight as to my partnership with CPS. CPS does not have to begin immediately after a brain injury, but can come on at a later stage from the result.
I have had a bilateral stroke, which means I had been attacked from both sides. My CPS was mainly in the top of my numb foot. Now although my foot is numb from touch.
I had a feeling like someone driving a hot large nail through the top of my foot. It was so bad that I cried in anguish. My left shoulder was less painful, but felt like someone was nailing a picture in it. I am now on a great medication that has almost completely stopped this pain, so I am lucky. You need to know that this pain is real for the survivor.
You may not see it, but “Good grief, Charlie Brown,” it sure hurts.
Let’s turn to the National Institute of Neurological Disorders and Stroke under the National Institute of Health – www.ninds.nih.gov/disorders/central_pain/central_pain.htm
What is central pain syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord.
This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma or Parkinson’s disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes.
Central pain syndrome may affect a large portion of the body, or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures.
Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.
Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain
According to the CPSA (Central Pain Syndrome Alliance) – www.centralpain.org – central pain syndrome can be 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 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 that can be irritated by any light touch, sometimes just the feel of cloth on skin, which can make dressing an ordeal. 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.
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.
It 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. CPS 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 defined the following things that can we call triggers to start or increase one’s sensations and pain levels: Movement, daily activity, ROM exercising; exposure to sun, cold, breezes, AC, barometer changes, weather. hot and cold, rain, snow; real pain or swelling, stress, anger, depression, touch from another person, blanket, tiredness. Sudden movements, ie yawning and other reflexive involuntary movements, like sneezing, being startled, fear and a vibration as riding in a car.
Synopsis
Knowledge is power. Most medications are ineffective for treatment of CPS. Therefore we must rely on our physicians. We as caregivers and patients must be aware this may not be in the survivor’s imagination. It was very real to me. No pain killers would touch the degree of pain I felt. I do believe the pain meds induced sleep which in turn assisted me.
Here are some more websites to assist you.
- www.wrongdiagnosis.com/c/central_pain_syndrome/intro.htm
- www.painfoundation.org/learn/library/pain-conditions/central-pain-syndrome
- www.strokeassociation.org/presenter.jhtml?identifier=3030470
- www.painonline.org/intro.htm
- Column by Chris DeWald
Donna Straugh on Fri, 6th Nov 2009 3:37 pm
Thank you so much for this information Chris. As a survivor myself, thankfully I’ve not experienced CPS yet. At almost 5 years post, I probably will not. I know have your article as a great source of reference in case I do develop problems.
Stroke has no mercy whatsoever on a person that’s for sure. It can keep on giving when we least expect it.
Andrew Sutton on Fri, 6th Nov 2009 5:36 pm
The sleeping medication zolpidem (aka Ambien) has now helped hundreds of people who have brain damage and a lot of them had a stroke. It includes reversals of paralysis, speech loss and even pain in a few patients. The cases are mostly in South Africa where this surprising effect was discovered by Drs Nel and Clauss, but there are reports now from several countries. Do a Google search on zolpidem and brain damage, stroke etc.
I think Chris should try zolpidem as soon as he can.
Good luck
Andrew
kim anderson on Sat, 7th Nov 2009 12:00 am
chris, i just love reading your articles, they are loaded with correct information and knowledge and experience, who better to write them than a stroke survivor themself.no one can understand a stroke unless they have walked in our shoes. i was fortunate to not have to deal with what you have had to. but i sure can sympathize with you. cps must be an agonizing deficit to deal with. i can only hope and pray you find relief soon. knowledge is the key to any illness. thankyou so much for this article and keep them coming!
Chris DeWald on Sat, 7th Nov 2009 8:18 pm
Thank You ladies and gentlemen. The med that was precribved to me is Cymbalta. This was a wonder drug for me. I am not a doctor no play one on TV, but this works for me. I thought there would be no end to the sudden pain onsets and heavy meds would not work to correct the pain. It knocked me out and therefore the pain was gone. Hahaha
My physician recommended it for it had benfits to fight depression and was aso nerve pain. Dang the doctor was right..again…..
Please always consult with your physician and advise them of “all” the meds and over the counter meds you take. Do not window shop docs and get drugs from a variety of Physicians without them having communication about your condition.
My GP and neurologist keep an eye on me. I need it too, I seldom listen to their advice(Impulsiveness)…an article I did a few ago…Thanks Again
Carole Sund on Sun, 8th Nov 2009 4:57 pm
Great article! Useful to give to medical professionals, since so few of them have heard of this condition. My stroke (lacunar, and very mild) was in 2001 and the CPS appeared in late 2006 while I experienced extreme stress during the illness and death of a loved one. My legs now sting and burn all the time and I can only tolerate fleece, so it’s sweatpants, short skirts or shorts for me. It’s a good thing I’m retired! Lyrica ( usually prescribed for fibromyalgia) and Cymbalta help to take off the edge. I find that the only thing that really helps is distraction. TV, grandkids, whatever. Please spread the word about this, because so few people know about it and so many go misdiagnosed and unrelieved.
URSULA PEGG on Sun, 8th Nov 2009 6:34 pm
i have been suffering from thalamic/central pain for almost 18 yrs. it is a lifelong condition, for which there is no cure. my stroke was very mild, but the pain set in
after just a few weeks. i wrote a poem on “adjustment” for the centraL pain alliance, WHICH DESCRIBES OUR FEELINGS: “Oh, GOD, IT IS SO HARD TO ADJUST, BUT WE LEARN THAT ADJUST WE MUST. CUT OFF FROM ALL OUR YESTERDAYS, BEFORE US LIFE’S MOST DEMANDING PHASE, OUR TOMORROWS HIDDEN IN IMPENETRABLE HAZE, MERCIFUL IGNORANCE OF WHAT WE’LL HAVE TO FACE – NOT TO REAILIZE NOR DEAL BEFOREHAND WITH THE TEST OF HOW MUCH PAIN WE CAN STAND – A TEST UNRELENTING AND WITHOUT END. OVER OUR BODIES WE HAVE LOST CONTROL, A MEAN STRANGER BURIED HIMSELF IN LIKE A MOLE. OUR MIND DETERMINES HOW MUCH OF US HE STOLE. FROM DAY TO DAY THE FIGHT GOES ON, LOOKING BACK ONE DAY, WE’LL KNOW WE HAVE WON. EVEN THOUGH IT WAS SO HARD TO ADJUST, WE LEARNED, INDEED, THAT ADJUST WE .MUST.
URSULA PEGG
Louise Mowder on Sun, 8th Nov 2009 7:01 pm
CPS is a very real and yet almost-unheard of pain. It is caused by Central Nervous System damage that somehow prevents the proper working of neurotransmitters in the brain, resulting in the endless sensation of severe pain in the body. Chris, you are lucky to have found pain relief with Cymbalta. CPS sufferers can sometimes get relief with medications that affect neurotransmitters – anti-convulsives, etc. But often they cannot.
It is a true disability with no visible signs, so others find it difficult to understand. What is far worse is that most people recoil in horror when they hear about it, and don’t want to believe that such a thing can exist. A disease comprised of nothing BUT constant, agonizing pain, that has no cure and will last your entire life? It sounds too horrible to be real. Many, many people don’t want to even think that such a thing can happen. And yet it is estimated to be as coomon as Parkinson’s Disease.
Combine its brain-created pain with the fact that spasticity is often a common side-effect of the disease, which results in actual peripherally-cause pain upon movement. You end up with an utterly disabling disease that can drive a person to suicide.
I pray that those of us who suffer from this may someday be truly blessed with a cure. Stem-cell therapy may yet provide treatment.
Melisa on Sun, 28th Feb 2010 6:25 pm
In January of 2009, my Husband and I happily gave birth to our 2nd child. 7 days later I suffered a stroke. I thought I was one of the lucky ones…I had survived…able to talk and only unable to walk for 8 days and only hospitalized for 10 days. I found out that the entire right hemisphere of my brain was one big malformation and that I had a blood clotting disorder and that I would have to remain on anticoagulants for the rest of my life, so I was happy to move on. However, the chronic and severe pain in my lower extremeties soon set in and my doctor told me that there was nothing wrong with me and that I must be suffering from Post-Tramatic Stress Syndrome. Long story short…I was just diagnose with Thalamic Pain Syndrome, which is essentially causing the Centralized Pain Syndrome in my lower extremeties. I have been unable to work and barely able to take care of my children or my household. It has been an unbearable year for myself and my family!