Helping Others Understand: Post-stroke Central Pain

Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know:

I wrote my first article on central pain syndrome (CPS) more than 20 years ago, when the disorder was most commonly referred to as “thalamic pain.” It seemed to me then that CPS was the cruelest of all stroke consequences — pain that never stops. Even preparing this article, I grit my teeth when survivor Patti Gilstrap describes her experience. It is hard for others to imagine pain that does not go away but can intensify.

To help us explain the unimaginable, we enlisted professor and chair of the Department of Anatomy at the University of California San Francisco, Allan Basbaum, Ph.D., who focuses on nervous system injuries and chronic pain; and clinical psychologist Patrick Finan, a chronic pain specialist at the Johns Hopkins School of Medicine.

The neuroscience of CPS

There are two major types of chronic pain conditions. “One is associated with tissue injury and usually inflammation, like arthritis, or because of tissue damage that comes with cancer,” Basbaum said. “The other is neuropathic pain caused by damage to nerves, generally in the peripheral nervous system. People with diabetes often get this type of neuropathic pain. Chemotherapies can damage peripheral nerves, usually in your leg or arm, and that can result in chronic pain.”

CPS falls into neither of those categories. With CPS there is no tissue injury or peripheral nerve damage. But CPS is a neuropathic pain, one that results from damage to the central nervous system. Stroke is one of the conditions that can do that, so can multiple sclerosis and spinal cord injury. This post-stroke syndrome was first identified by two French physicians, Dejerine and Roussy, in 1906; they described it as pain that could not be quieted by any drug. “The pains that are characteristic of CPS are very different from arthritis-type pain,” Basbaum said. “It’s not a deep pain. It’s often a burning sensation, often with terrible hypersensitivity, both of which are common features of neuropathic pain. These are not pains that are particularly responsive to opiate-like drugs, so they are unquestionably very difficult to treat. In fact, most drugs used to treat these pains are anticonvulsants, which are used to treat seizures. Unfortunately, these approaches are not very effective.”

Dr. Allan Basbaum
Dr. Patrick Finan

There are two reasons why opiates don’t work. First, because they work on opiate receptors, which are all over the body, they can’t be targeted just to treat the pain, and inevitably have adverse side effects, including lethal ones because opiates can block respiration. And second, the neural pathways that send and regulate pain signals are likely injured when there is damage in the central nervous system: “What we think is going on in the case of this type of central pain syndrome is that the stroke actually kills the inhibitory systems that should normally keep pain controlled,” Basbaum said. “Basically, the controlling system has been destroyed, so opiates can’t work because the system they would normally interact with is gone. And the result is spontaneous, often burning pain, and terrible hypersensitivity. In other words, stimuli that are normally not painful become very painful. That’s what makes this pain so difficult for patients.”

So, in 2018 it is not that different from 1906, few drugs help and even those that do provide very limited relief, often with unacceptable side effects.

The psychology of CPS

According to clinical psychologist Patrick Finan, there has been some progress in understanding interventions other than medications for treating central pain disorders. “An early focus of many psychosocial chronic pain interventions is to help patients understand that pain is a phenomenon that is necessarily regulated by our brains,” he said. “It is important to teach patients that fact because many patients come into our clinics fighting against a perceived stigma that pain is ‘in their head,’ that it is psychological. That idea can come from several sources — interactions with physicians or friends and family — but there tends to be this stigma that generally reflects a patient’s concern that the medical community won’t believe them or will think that they’re in some way ‘overselling’ the degree of suffering that they’re experiencing.”

To lessen this stigma, pain psychologists may have an open and frank conversation early on about the neurobiology of pain and how the way our brain processes emotions and thoughts is integral to our experience of pain.

It is not unusual for CPS and depression to co-occur and treating the depression can improve the quality of life. “Successful psychosocial intervention for depression can lead to the development of coping skills and resources that can help with coping with pain,” Finan said. He uses the example of “pain catastrophizing,” where a person tends to think about and magnify the threat value of pain and may feel helpless. “The result tends to be the perception of greater pain via this cognitive construct of catastrophizing. That’s a maladaptive coping strategy, and it tends to result in a greater experience of pain. But it’s also something that is directly targeted by cognitive and behavioral interventions. The clinical community can provide cognitive and behavioral interventions for depression that can be quite effective at reducing pain catastrophizing. That can lead to, at times, a reduction in the perception of pain and perhaps more often, an improvement in the perception of quality of life.”

Illustration of man having pain on one side

A common behavioral result of CPS is a tendency to withdraw from the world as a safeguard for avoiding triggers that can intensify pain, which can be very unpredictable. “That type of variability and that level of uncertainty can be quite distressing over time and leads patients to withdraw and guard against experiencing that pain,” Finan said. “Withdrawal is a long-term problem in patients with chronic pain and something that we try to address very directly in psychosocial interventions. Patient engagement with their environment—be it social or physical—is one of the key elements to making improvements and seeing gains over time in pain-related symptoms. We work with patients to develop greater behavioral activation by countering some of these maladaptive thoughts that lead to guarding.”

CPS patients are often depressed and anxious. “Neurobiologically, the experience of persistent pain is thought to alter functioning within some of the same neural circuits that facilitate depression and anxiety,” Finan said.

Family can play an important role in a CPS survivor’s quality of life. Of course, it helps if family members educate themselves on chronic pain and the interventions and strategies to help patients cope with their pain. “Generally though, the most helpful thing is fostering a supportive family structure where the patient feels understood and can express their feelings,” Finan said. “For example, where the perception of judgment or the perception of bias — ‘it’s all in your head’ — is not around, that would be a familial environment that we would encourage. We try to engage family in therapy and encourage patients to be open and honest with their family members about what they’re experiencing and what they need to successfully adapt to chronic pain over time.”

Families also have a role to play in eliminating maladaptive coping such as pain catastrophizing or withdrawal and avoidance. “They can really play a key role in helping to promote the adaptive coping strategies and avoid the maladaptive ones,” he said. “To do that family members need to be aware of the differences between adaptive and maladaptive coping. A psychologist can introduce this concept if the family members themselves aren’t aware of them or don’t really know how to look out for things that might be considered maladaptive or adaptive.”

One way family members can help their survivors is to help them set goals. “If a survivor is going to make progress and see symptom improvement over time, and if that symptom improvement is going to derive from self-management of pain, then the individual has to have goals, and those goals need to be reasonable,” Finan said. “If the goal is ‘I want to feel zero pain,’ that’s most often an unreasonable goal because it can’t be attained. In contrast, if the goal is, ‘I would like to feel less pain and be more active,’ they can start to make more reasonable goals around that. After setting goals, keep track of the behaviors that move them toward those goals. Keeping logs and maintaining that consistency can help you get a sense of whether your goals are indeed attainable.”

Finan cautioned against wishing for a magic bullet. “Focusing on such a solution can lead to greater anxiety and eventually, greater depression when the goal is not attained,” he said. “The search for a cure is something that most people who experience chronic pain go through at some point. Getting to a place of pain acceptance is a real challenge, but there are interventions that are designed specifically to work with patients on this concept of pain acceptance, and gaining access to pain psychologists would be a real benefit, I think, to people with CPS.

“I would say the number one thing the family can do is to approach the survivor without judgment, to be receptive and open to listening to them and how they are experiencing pain.”

Survivor Patti Gilstrap Shares Her Experience with CPS

My life-changing journey began between 1987 and 2010 with hemorrhages and surgeries of multiple vascular malformations known as cavernous malformations (CM) throughout my brain. CMs are abnormal, thin-walled blood vessels that tend to leak or seep blood. In 2010 a thalamic, deep-brain CM persistently hemorrhaged and surgery was required. I was 50, and that’s when life turned upside down, and I was introduced to a new and painful body. Since then, I live with an incurable, torturous and poorly understood neurological pain known as central pain syndrome (CPS).

Upon awakening from surgery, I soon discovered my affected left hand had a pins-and-needles sensation. I couldn’t understand what was happening until a nurse simply stated, “You have thalamic pain.” This is also known as central pain syndrome or post-stroke pain. Shortly after the initial CPS symptoms of pins and needles, the burning began in my affected hand; it was so bad that I inadvertently gave myself frostbite with the overuse of ice packs trying to cool it down. Little did I know then the brutal meaning of CPS and the harsh impact it would have on my life and that of my husband, Rick.

CPS is caused from damage to the central nervous system, a pain which makes the simplest, most basic tasks and activities unimaginably painful, limiting and often undoable.

My entire left-side is numb, yet it is also affected with a relentless muscle tightness, electrifying burning, throbbing, stabbing and searing pain of CPS that even the strongest painkillers cannot relieve. If you can imagine wearing denim on your worst sunburn or immersing and keeping part of your body in a pot of scalding water, that is what I live with every waking moment of my life. Unfortunately for me, the medications and acupuncture I’ve tried to treat my pain have remained unsuccessful in providing relief. While temporary, a squeezing-like massage on painful muscles or my affected knee given by my husband brings momentary relief.

To add to my discomforts, with any gastric distress, my affected left side feels like there is a giant basketball pushing against the side of my abdomen and/or ribs.

Survivor Patti Gilstrap with her friend Harper

This is so uncomfortable, yet a gastroenterologist has no answers.

True to the nature of CPS, I’ve observed my progressive, evolving, escalating symptoms and decline, and often fear how these symptoms will progress as I age, as well as the unknown effects of constant pain to my mind, body and soul.

Chronic pain affects not only the pain sufferer, but their loved ones as well. Simple, basic things such as, holding hands with my husband, petting our cats, grasping a tissue, or turning pages of a book feels like razor blades on my affected hand.

No matter how soft the material, clothes feel very abrasive, much like a Brillo pad on raw skin. Getting dressed is excruciatingly painful. Wearing shoes has become a discomfort since developing CPS — my foot feels as if I’m walking on marbles. I’ve found the most tolerable shoes are the inexpensive, mesh shoes or clothmade materials with no arch support. Adding to my pain is an old, minor knee injury. Because of CPS, when I walk it feels like my knee is bone on bone. Imaging tests have confirmed there is no visible damage to repair, so I do the best I can, but future mobility is of concern.

Seasonal elements wreak their share of torments, such as a cool breeze on a warm summer day that would normally feel good, but instead feels like a shower of burning needles. Cold winter months especially increase pain. Even in the warmth of home while resting under a heat lamp and using heating pads, the pain is so great that all I can do is lie still, since movement escalates the pain.

Activities I once enjoyed — leisurely walks, bike rides, or yard work — I can no longer do. At one time I was very independent, but because of CPS and double-vision secondary to brain damage, I depend on others for transportation and have had to adapt to many aspects of visual impairment — such loss is very devastating. Car rides once enjoyed with my husband are now minimal and few since movement is painful, as well as leaving my comfort zone of home is discomforting and exhausting.

I do the best I can to participate in activities within reason, often pushing myself to participate, aware that overextending myself will lead to cognitive fatigue and exhaustion. Avoiding overextending myself is often difficult to do and listening to my body is most important to help avoid this. Stressors of any kind will only aggravate and increase pain and symptoms. Planning for activities is difficult to do, since I never know from moment to moment how I will feel.

My essential coping skills and simple pleasures are: distractions, humor, adult coloring books, reading, flower gardening during spring and summer months. Participation on health-related forums and advocating whenever possible provides purpose and meaning to what I’ve been through, and helps me feel like less of a “victim.” Communicating via social media with family and friends I’ve known for a long time helps with the isolation, loneliness and depression of chronic pain and illness, as well as keeping updated on current events locally and across the nation.

While exercise is not pleasurable as it used to be because it adds to pain, I feel it’s very important to my overall health. For myself, 15 to 30 minutes of daily recumbent exercycling or chair exercises on YouTube provides good aerobic workouts that raise my endorphins, energy and spirits.

During these years of coping with CPS, I’m shocked, saddened and angered there is so little acknowledgement or information from health care providers. Had it not been for the post-op nurse telling me I had thalamic pain, I question how long it would have taken the medical communities to acknowledge and inform me of my pain and bizarre, discomforting and frightening symptoms. Knowledge is essential when living with any illness, and in this sense, I feel I was neglected.

Until there is more awareness, there will be more experiences like mine. Awareness is the beginning of my hope. Presently, CPS is not known to the general public, and patient-friendly articles are scarce. CPS awareness will create a better understanding among patients, the general public and health care providers, leading to increased interest and research in the neuroscience communities and eventually creating effective treatments for many people across the world. Until then, CPS treatment will remain the same.

PATTI GILSTRAP | Survivor Medford, Oregon

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke central pain may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet available on the Stroke Connection website that you can print or share via email or social media with family and friends.

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