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Discovering Central Pain Syndrome

June 13, 2013

 

panopticon

 

There are cyberplaces where CPS is known and discussed – the CPS_Alliance@yahoogroups.com being the oldest. But there is also a CPS page on Facebook, a private CPS group on Facebook, and now the pages for the Central Pain Syndrome Foundation, the nascent 501(c)(3).  It’s practically a daily occurrence that CPS sufferers or family members join one of another site. Everyday, another member signs up. All of us are looking for answers, or at least information. It’s positively soul-crushing to discover there really is none.

There are as many ways to discover the name for this intense, constant pain, as there are people who have the ill fortune to develop it. Some folks, like me, are very lucky. I found out only four days after my stroke, while I was still in the hospital. It only took politely demanding information from two doctors before I heard one say, “I think  I’ve heard of something like this. Let’s start you on gabapentin, and see how that works.” At the same time, nobody that I spoke to in the hospital could give me any more info about whatever was causing the increasing torture I was experiencing. So, surprisingly, shockingly, I discovered that medical professionals couldn’t help me. It seemed impossible that no physicians understood this scourge. I was convinced that it was perhaps because the excellent members of the Neurology Department at my top Research Hospital were out of the loop on CPS studies. It was harrowing to think that the “top docs,” the experts that I was depending on to heal me, were essentially as clueless as I was.

Well, of course no one expert can know, *I* would have to find out all about this disease.When I got home, I spent a month googling various terms “thalamic stroke,” “post-thalamic stroke syndrome,” “dejerine-roussy,” “central pain syndrome.” There wasn’t very much information on the web in 2007. A lot of it was on sites specifically for the medical profession, and behind steep paywalls.

Still, I searched and searched, certain that the medical profession wouldn’t have left the sufferers of such a bane without recourse. There must be some effective treatments! There was certain to be research ongoing. Perhaps someone had found a cure! I was certain I could uncover it, and help myself. When I found the CPS Alliance, it was such a relief. Hope, eternal even though banked, sprang up again. Here was a group of hundreds of patients, helping each other. Surely there would be answers to my questions there!

Again, no joy. We were all a united brotherhood in two things: an unbearable, indescribable pain – and a frustrating search for a cure, for effective treatment, hell, for doctors that even had any idea what was wrong with us! We traded potential solutions, many still experimental, such as ketamine infusions, and Deep Brain Stimulation. Nothing seemed to work for long. Treatments that relieved pain for a week, maybe two, eventually folded underneath the people who tried them like broken folding chairs, leaving them even worse off than before.Eventually, a group of the more healthy, determined and desperate of us started the long process of creating the CPSF. It seems the only way to get the research done, and the answers we need, is to finance  that research ourselves.

But while I was performing my own fruitless searches for the CPS Anodyne, more and more people kept joining our groups. Most of them were completely bereft. They had been kicked from ignorant doctor to arrogant ignorant doctor to flummoxed doctor for years, with no answers. They often didn’t know the name for what was tormenting them until they did web searches and found the patient groups pages. The stories of suffering were overwhelming and emotionally draining. The amount of physical torture that our members had suffered for years, with no true respite, was staggering. Doctors who didn’t know about CPS refused to help[ these patients, because they refused to believe their stories. The patients were “drug seeking,” “hypochondriacal,” “neurotic,” even” “schizophrenic.” So of course they were sent home with pamphlets on mental techniques to control pain, instead of actual pain relief.

Not only that, CPS had destroyed more than their bodies. It also frequently destroyed their families, their finances, their entire lives. It’s incredibly difficult for even “lucky” patients on “good” days (stable barometric pressure, the right temperature range, no stresses, no demanding activity, sufficient sleep) to have more than four hours of productive,somewhat taxing work. This means that you can’t hold a steady job – but you probably can’t collect any kind of disability, including Social Security. You will have to hire a lawyer you can ill afford to win your SSI benefits, and those are not enough to cover your living.  Judges who award disability payments don’t recognize it. If you can find a physician who understands your disease and write you prescriptions, the treatments are expensive. Spinal CPS sufferers, in particular, can often only find relief in narcotics, and the Federal government’s regulations on narcotics make it very difficult for them to get what they need for pain relief.

Without their job, without an income, and in constant burning torment that no one can see, and that almost no one has heard off – if such a person is married or in a committed relationship, they have immediately changed in major and important ways. All of the expectations and plans that a couple may have made now must be altered or abandoned. Joint financial obligations, such as a mortgage, become dependent on the one healthy person who can work. Frequently, the burdens are too much: the spouse leaves, the house is foreclosed, a person is left alone, alone, alone, with nothing but the terrible pain that will never end as long as you live, and a perpetual struggle to survive financially. Suicide begins to look like a reasonable choice – at least you won’t be living in endless excruciation for decades to come, alone and unloved.

Yes, it is a prison, and the prisoners have been sentenced to a life in what seems solitary confinement. I often envision it as a psychological form of Jeremy Bentham’s panopticon prison, illustrated above. In 1791, the Utilitarian philosopher proposed a new form of prison to the British government, one designed to cause psychological distress among its prisoners (as well as saving money on guards). He proposed a circular prison, with a guard tower in the center, and cells arrayed along the outside walls like petals on a sunflower. Each cell would only hold one prisoner, who could not see or converse with  any others. The tower itself would be concealed by venetian blinds, so each prisoner could never be sure whether he was being observed or not. This was designed to create a permanent sense of *helplessness* in the prisoners, who, having lost all hope, would become docile. The benefit to the government was that it would be much less costly than the regular chokeys, with their cells laid out in rows. This would only require a few guards in the center tower. But since the prisoners could not see the guards, they could never be sure whether they being  were watched or not.

No panopticon prisons were ever built, but the concept has been often used as a metaphor for the Surveillance State, a 1984 vision of a citizenry kept in line by the idea that. at any moment, Big Brother might be watching you. (You may here about the panopticon during discussions of Edward Snowden’s revelations in the past week about the possibly unConstitutional activities of the NSA.) But if CPS survivors live in a prison , it is a panopt6icon. (I don’t know enough about the prison at Guantanamo to be able to use that as a metaphor.) We are all helpless under the perpetual presence of the pain, who has been made our jailer for a lifetime. We all feel alone, trapped in our narrow cell, with no knowledge of any other prisoners in similar situations. The loneliness compounds the stress, which intensifies the pain. What is worst of all is that we don’t have any idea why *we* have been so incarcerated. The jailer s heartless; even a hunger strike will not move him. There is no possibility of appeal.

This is the Central Pain Syndrome that we have all discovered We didn’t know the name of our prison at first. It was only persistence, and the hope of finding relief, that made most of us pursue its name. But knowing the name of our jailer isn’t enough. We need to break out of our separate cells so that we are no longer suffering from the torments of solitude.

Most of all, we need hope that we will someday walk out of this prison. We have to plan and stage that jailbreak ourselves.

How did you discover CPS?  How long did it take you to find its name after you first experienced it? Every piece of our testimony will help chip away at the thick stone walls that imprison us.

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5 Comments leave one →
  1. Eileen permalink
    June 13, 2013 10:26 PM

    Louise, your writing style leads the reader down the path of your experience like we were right there with you. A well-articulated map of where you have been, and where you are heading. “What a long……………..strange trip it’s been!”
    Thank you for sharing……
    Eileen

  2. Patti permalink
    June 22, 2013 9:02 AM

    Well said, Louise!
    As for when my CPS had a name to it? While still in the hospital following brain surgery for a progressively bleeding thalamic cavernous malformation (also known as cavernoma, cavernous angioma), a nurse explained the pins & needles sensation in my hand was “thalamic pain.” The hellacious CPS journey began & continues to evolve…

  3. Kelly permalink
    June 22, 2013 10:19 PM

    Great story Louise,
    Post AVM Surgery, I noticed the burning and pins and needles, but didn’t mention it to the doctors, as I thought it would be going away. Follow up visit I asked the doctors, they said Thalamic pain. Gabapentin was prescribed and it made things a bit more tolerable. It wasn’t until I started seeing another neurologist that he said it was CPS, and I was now a medical experiment.

  4. December 30, 2013 6:24 PM

    Thank you so much for writing this, this is balm for my sad soul, and so beautifully written. I have struggled for years with this debilitating pain, and while I would never wish it on anyone, not even my worst enemy, at least I don’t feel so alone. And now I have a name to take to my doc, and a some resources to investigate. And thank you so much for describing the “ideal” day, those are exactly the conditions of my ideal day, and trying to help people understand this is so hard. (The barometric pressure always trips them up even though an ENT even dx’d me with vasomotor rhinitis some years ago.)

    BTW, it took me a long time to find the term CPS because I have not had stroke, nor do I test positive for signs of MS or Parkinson’s, the conditions that seem to be most associated in the literature with CPS. I have been dx’d with classic SLE (Lupus) – butterfly rash, ANA, the whole nine – comorbid with 11-12 tender points positives for FM. This just goes to show that when they say Lupus can have “various CNS symptoms,” CPS should be added to the list, because finding CPS associated with Lupus or even FM is next to impossible until you finally have the term CPS or Central Pain Syndrome. (Reading about it also reinforces for me my suspicion that FM is a symptom associated with autoimmune disorders, not a separate condition.) While stroke runs in my family (and I remain vigilant), I have not suffered stroke to the best of my knowledge. It does make me wonder about genetic markers for all of this. (I do get the occasional migraine, but none that have ever qualified as even TIAs.)

    My saving grace was that I had already entered the system because of PTSD combined with what we now know were precursor symptoms of the Lupus, including a thyroid that had grown a toxic nodule – assumed retrospectively to be the first major sign of autoimmune trouble. That sent my system into rollercoaster metabolic mode. (I had successful surgery for that, although I remain suspicious of the replacement hormone I take, Synthroid. I’m not sure I could do without, but always wonder if I shouldn’t be taking something different.) Ironic, the PTSD is much less a problem now (thanks to some good therapy), but the physiological stuff is often horrible enough to make me feel like I’m having PTSD symptoms again just from the stress and anxiety of the health problems. Still, I consider myself luckier than most, I have a doc who believes me and treats me, under the assumption that this is some kind of idiopathic manifestation of SLE, and I have an income and health insurance. I’m not rockin’ the casbah, but I squeak by, month to month with shelter, food, and medical. I know many who are not so lucky. My one serious deficit was a name for the pain and a way to articulate it. Thank you for erasing that.

    I notice you are more active on FB than on the blog, so I will follow you there, while reading up on past entries and links here. Thank you again.

  5. Teresa Garcia permalink
    January 26, 2014 2:06 AM

    Luckily for me, tramadol gets rid of most of the pain. Unfortunately one has to keep increasing the dosage and eventually take more than allowed.

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