When the Pain Never Goes Away
Understanding central pain syndrome (aka, thalamic pain) after stroke
Adapted from "When the Pain Never Goes Away," Stroke Connection September/October 2003
Last updated January 2014
“I feel like I have no skin, only flesh showing, and it’s being rubbed or scratched constantly. My leg feels like it’s made of solid wood, and my skin is too tight. Someone is ripping at my arm, hand, face and foot with razorblades constantly. My fingers are made of metal worms that move constantly. My arm and other bones are broken and sticking out of my skin.
“I cannot let air blow against my affected side because it hurts too much. Someone is constantly slapping and clawing at my face, arm, hand, leg and foot. It feels like I just pulled my arm and hand out of a meat grinder. I have sharp metal objects ripping at me all the time.
“I have been burned severely to the point of melted flesh, and someone is clawing at it. Basically, it is whatever you think it is at any given time, as it feels like all the different types of pain you can imagine, all happening to you all at the same time. I know that’s difficult to imagine, but it’s difficult to explain the evil, horrific, non-stop ripping, clawing, beating, burning,…on and on…AND IT NEVER STOPS, EVEN FOR ONE SECOND. IT’S CONSTANT AND WILL NOT STOP, AND YOU ENDURE IT FOR THE REST OF YOUR LIFE!”
This is the living nightmare of Robert, who had a stroke when he was 29 years old. This definition of hell, as bad or worse than any of Dante’s tortures, is so far beyond our experience that we can’t imagine it is real.
The inability to imagine this sort of pain is a problem. Because healthcare providers are unlikely to see many cases – CPS is, thankfully, relatively rare – they often dismiss it as a psychiatric problem.
Patients are told they are making it up. Sometimes they are accused of faking it. And sometimes they are told to stop being so weak.
“It’s embarrassing how ignorant physicians are about central pain,” says Dr. Kenneth McHenry, a physician who developed CPS after a spinal cord injury 14 years ago.
One thing is clear, it’s impossible for someone else to truly comprehend the experience of someone with CPS. Most of us simply don’t have a context from which to imagine central pain. When we think of pain, it is localized and we know it won’t last forever. While it may be intense, it responds to some treatment or another and eventually goes away. Even migraine sufferers find some relief. None of that it true for people with CPS.
Central Pain Explained
It’s difficult to leap from peripheral pain, or motor pain to central pain syndrome, or CPS. With peripheral pain, the sensation is experienced immediately at the site of the injury. Central pain response may be delayed.
An injured motor nerve carries less current, but an injured pain nerve does exactly the opposite. Its signal increases, but it’s not a simple increase. Pain nerves eventually gain the power to influence uninjured neighbor neurons, which begin firing independently. The process can become so violent that the thalamus, the brain’s pain center, records “bursts” of impulses from these injured nerves.
After sufficient bombardment threatens neuron death in the thalamus, this pain center “shuts down.” Central pain apparently occurs at this point. It’s as if the entire pain system is acting like a nerve ending. These pain signals reach the cortex of the brain, causing unbearable suffering.
For many, intense episodes are stimulated by something as simple as a very light touch. Many who experience CPS have to wear light, abbreviated clothing because they simply can’t stand the touch of anything on their skin. Dr. McHenry is hardly able to sleep at night because the touch of the sheets causes pain.
Patients may not feel any sensation in a limb when touched, but can feel constant pain. Other survivors with CPS may report reduced sensation, the inability to feel normal stimuli, while feeling a constant burning.
“All the pain is central because you experience it in your central nervous system,” says Dr. Thomas Swift, president of the American Academy of Neurology, “Central pain syndrome is a convenient term doctors use to refer to a lesion in the brain or spinal cord. This pain has characteristics that are different: unrelenting, very severe, with peculiar qualities – the skin is coming off, boring into the bone marrow. There are people with CPS who commit suicide because of the pain.”
Although there is no official scale of pain intensity, there seems to be a continuum of CPS pain. Dr. McHenry and Robert are at the extreme end, at levels 9-10, while others report constant pain of less intensity and are capable of managing it to varying degrees.
Psychological Impact of CPS
In addition to the physical pain caused by misfiring neurons, CPS also has a psychological component. Not only is the nervous system under assault from extreme, unrelenting pain; a person’s psyche is under assault as well. Survivors with CPS may need psychological care, along with medication such as tricyclic anti-depressants to help them have some experience of life outside their pain.
Most of the survivors we talked to had or were taking anti-depressants with varying results.
As with other stroke deficits, CPS removes people from normal living. Besides constant pain, there is always an underlying concern that too much movement or a change in the weather will explode into a full-blown pain episode.
Amanda, 45, survived a double brain aneurysm. She describes her situation as “burning, searing pain that feels swollen, as if the skin around it will explode. Muscles in a knot. Skin all over so sensitive sometimes I can’t even get dressed. I can only wear the softest clothes. My feet are so tender to walk on that I fear I may not be able to walk at all soon. I’m sensitive to changes in temperature and mostly can’t be touched at all without pain.”
Virginia Peter survived a cavernous angioma (clusters of abnormal blood vessels) in her right thalamus almost three years ago. “Bad weather can really irritate the CPS to a point where I just want to sleep. When I take some of the pain meds, I am pretty knocked out, so I can’t participate in much. My hand is probably the worst place of pain. When the CPS is at one of its roaring times, I cannot tolerate using my hand at all. Therefore, I am not willing to participate in normal activities such as preparing a meal or using the computer.”
Robert has stood against his relentless pain for more than a decade. “I cannot run or hold things with my hand. I cannot walk very far without great pain going from bad to worse. When it gets worse, it stays that way the rest of the day.
“My left-side movements are jerky, I must always have my left hand in my pocket, or squeeze it with my right hand, or sit on it. The pressure helps the pain some. I have double vision so it’s difficult to drive or do anything that takes depth perception. I limp still. My mobility is limited. At first I didn’t even want to leave the house…gradually I got to where I would drive to work, but I didn’t want to travel anywhere that I didn’t’ have to.
“Pain, as I have it, consumes so much of your energy, you cannot enjoy life as you knew it. Nothing sounds like fun anymore. I guess you want to withdraw from life to deal with pain, as there’s not room for fun and pain in the same sentence. Sometimes, even with the medication I’m on, I don’t want to participate in anything. I must guard my existence, for I feel I may fall over the edge at times.”
Central Pain Syndrome: Treatment
Treatment for central pain syndrome (CPS) has varying degrees of success. Some are able to manage it with medications, generally anti-convulsants and anti-depressants. But finding the right medication regimen takes time.
Dr. Swift explained that pain treatment is progressive. It starts with common analgesic drugs like ibuprofen. He adds “tricyclic anti-depressants, which are cheap, safe and effective.” Depending on how effective these methods are, treatment may progress through increasingly strong analgesics and possibly up to narcotics.
“Narcotics are the best drugs for pain because they bind to pain receptors specifically. Narcotic analgesics like morphine, methadone and heroin are very effective. If it gets where you’re taking too much, you can get an implantable pump. Because you are putting the drug right in the spine, you can use tiny amounts that just affect the nervous system, so you don’t get a lot of the side effects that you get when taking it orally or by injection.”
The absolute last resort is neurosurgery, such as deep brain stimulation where an electrode is implanted and sends stimulation to the pain receptors.
Robert has a morphine pump implanted and credits it with saving his life: “The pump is a gift from heaven to me. It takes the edge off, but I still have great pain.”
Finding the right doctor is crucial. Some find the right one on their first neurologist visit. Others have to go through many before finding the one who believes them and begins the treatment process. For Robert, Dr. Swift played an important role, eventually authorizing the morphine pump.
“I am a strong believer in the doctor-patient relationship,” says Dr. Swift, who retired as the chairman of the department of neurology at the Medical College of Georgia. “When a patient goes to a doctor, good things can happen. But if you go to a ‘program,’ I’m not sure good things can happen. Whose responsibility is the patient’s pain at the end of the day? The doctor-patient relationship is really an amazing thing. In it the doctor takes full responsibility for the welfare of the patient.”
So how does a patient find such a doctor, one who is best suited to treating this horrific pain from stroke?
“Some patients have difficulty choosing doctors,” Dr. Swift says. “Sometimes they see one just because they can get an appointment. I would advise them to look in Best Doctors in America and find a doctor that is board certified in neurology, anesthesiology or physical medicine and rehabilitation. Most important is a doctor who takes you seriously and will be available when you need help.”
The Need for Research
There are no solid statistics for central pain syndrome (CPS). In a recent online survey by the American Stroke Association, nine percent of respondents reported they had CPS. We simply don’t know how common it is. Those who suffer from it are often dismissed as making it up or exaggerating it.
Dr. McHenry says that people with central pain need to unite and advocate for pain research. “Living with central pain is like living in a kind of Auschwitz. You are tortured constantly. No on in America would allow people to go to a place like Auschwitz ever again. If they knew the reality of the lives of central pain sufferers, they would not allow it.”
A consistent theme among central pain syndrome (CPS) survivors we contacted is the belief that most doctors don’t understand. Dr. Swift points to the fundamental issues of time and money. It takes a lot of time to treat a patient with CPS, and that treatment will likely go on for a long time without substantial improvement – two circumstances that insurance companies are likely to challenge. Reimbursement does not begin to cover the amount of time necessary to investigate this mysterious syndrome.
“Obviously, doctors cannot lose money on every transaction and stay in business,” Dr. Swift says. “But I’m not concerned with doctor’s incomes. I’m concerned with the care of patients. When doctors sit down with them, patients feel better. That’s called healing, and doctors are supposed to do that, but they can’t because there is no reimbursement for the thing that really makes being a doctor worthwhile, being in the trenches with the patients.”
He also identifies doctor-patient communication as another problem, one compounded by the lack of time spent together. When they only have a few minutes, “It’s hard for patients to remember more than a couple of things. They’re scared, they’re hurting and they’re having a hard time taking in what the doctor is saying.”
“For instance, I might prescribe a tricyclic anti-depressant, and I would explain that it makes you feel better by changing your brain chemistry, so you won’t feel better for three weeks. But when the patient returns, they tell me they took it for a couple of days but they didn’t feel better so they stopped taking it.
“Add that to the feeling that they aren’t really getting meaningful time with the doctor, and you can see why patients feel like they’re not being served.”
To help clarify communication, Dr. Swift says that patients should go into a visit with their doctor informed about their condition. “Either get on www.PubMed.com or go to a patient support group Web site,” he says. “Have your questions written out and don’t let the doctor leave the room till he’s answered them.” He also suggests tape-recording your session with the doctor.
Advice to Caregivers
Just as pain takes all the energy of those who have it, it drains other members of the family. Central Pain Syndrome (CPS) isolates those who have it because the pain causes a person to be constantly focused on an interior state and on guard against what could make it worse.
“Spouses and others need to cut people with CPS some slack,” Dr. McHenry says. “They need emotional support. Some people are embarrassed to talk about it. They are embarrassed to say they don’t care about anything else because it is so bad. They feel broken. They have lost their human dignity. They are very isolated.”
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Article updated 3/13/19 and 6/14/18: Removal of information about support organizations that are no longer available.