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Is it cruel to tell the truth?

April 21, 2012

That is the sort of question that comes up in your 20s: “Is it cruel to tell the truth – the you are just not that into someone , who wishes that you were?” etc. All the big questions in your 20s seemed to about where we were going: in relationships, in careers. I gather that there is no place to “go” anymore. Careers are only for a blessed few; relationships are desultory and sporadic, or set for life. The new economic realities have constricted people’s choices about where they can go.

But there are still interactions in which the quandary arises: is it cruel to tell the truth? This is true in the CPS Alliance. A new member joins, and has a lot of questions. What can we expect? Do people get well from this, as they do from every other disease that is not fatal? Are there drugs that help? What potential cures are in the works? I know what they are too scared to ask: Does this get any better? Is this abysmal pain all I – or my love one – have to face, every minute, every day, for the rest of my life?

They want comforting. They want hope. They want …. a lie I cannot lie tell. They want to know that there is a cure. They want to know if acupuncture helps. They want to know if there is some secret, non-Western cure. They are looking for the secret to not feeling this abominable pain every second of every day for the rest of their lives. (which, ultimately, in the question that each of us asks.)

I hate being the person that tells them “No. There is no cure,” Or do I? I sometimes feel like “Welcome to my world” when I write my responses to their first posts on the CPSA. Is it cruel of me? It is what it is.You lived  in a world where you had no idea that CPS existed. Now you know it exists, because you have it. I don’t want to be cruel in the way I tell you about the way the body can work, but, yes, it can work this way.: it can create the sensation of continual, excruciating pain, even when there is no “cause.” The “cause is the lesion that creates Central Pain Syndrome. You have a lesion, somewhere along your “spinothalamicocortical pathway. *That* is why you have CPS.” My cruel answers to your questions”

“1.)     Yes, any of us who have CPS as a result of thalamic pain syndrome will have pain on whatever side has been hit. I have left side pain, b/c II had a right-side stroke. My leg is most severe in my hand and in my foot, and progresses up the limb. Without my drugs, it is unbearable and on my entire left side. With my drugs, it is tamped down to about a 3. When I’ve gotten enough sleep and have just awoken, it feels like I almost don’t have pain. The lack of tactile sensation, however, never goes away. Those of us who have gotten CPS as the result of a spinal injury or a disease like MS will have pain in other parts of the body, perhaps even the whole body, and many cannot find relief from any drugs except narcotics and opiates.

“2.)     If Lyrica is working to any extent at all, that is good news. It means that her CPS responds to anti-convulsants that work with the GABA neurotransmitters in the brain. She mat also respond to gabapentin (Neurontin) which is the drug I take, or Horizant. Gabapentin worked for me from the first time I used it, four days after my stroke. With any of these drugs, you start low and are gradually worked up to an effective level. Do NOT stop until you reach that level. There will be extreme sleepiness for up until two weeks after each new higher dosage, but she will get used to it. I take 3200 mg/day, and some of us take much higher doses. There is no known overdose level of gabapentin – I don’t know about Lyrica. Perhaps someone here can tell you. The point is that you should ask your doctor to prescribe what you need. You tell HIM, not the other way around.

“3.)     Acupuncture does not help. This is an organic disease caused by damage to the brain. The mechanism is till not understood, but apparently there is either an overabundance of neurotransmitters, or not enough reaching damaged neurons, or some combination. Almost all non-traditional treatments will not ease the pain. Some of them – like meditation – make it easier to live with mentally. This can be a psychologically devastating disease if you let it get to you. Most people don’t even want to believe that such a disease is even possible – endless, excruciating, incurable pain, that has very few treatments? So to discover you have it – and are faced with it for the rest of your life – is rather disheartening to say the least.

“4.)     The pain will increase *if* she doesn’t take her meds. We’ve found that if the pain is left untreated, it does spread, as apparently more and more neurons become sensitized. If she has found a med that is helpful, then she should continue on it, or switch to a drug in the same class.

“5.)     There is no natural healing. Unlike most illnesses, the body has no way to correct this (as far as we know.) In the past, before even the meager treatments that we have were discovered, suicide was one of the usual ways that this disease ended. Some of us – those with less pain than others, or the spouses of CPS sufferers – are working to form a 501 c 3, so that we can kickstart some research and educational programs.

“6.)     No physical therapy will work with this. No one has tried the sort of treatment that your granddaughter is receiving – which sounds terrible. All I can say is that these are not “false pain signals” in that the pain is very, very real. The pain that CPS causes is essentially a combination of all the pains that the somatic nerves can deliver – freezing, burning, electrical shocking, acid-eating, and crushing – all at once.  What is “false” is that our limbs are not actually being burned, frozen, crushed, electrocuted, etc. Stretching, yoga, tai chi, and other exercise programs will help her keep flexible, since spasticity is often a secondary condition that develops

 “The hardest thing to understand about CPS is that right now there really is no cure, no truly effective treatment, and no healing. It is like being in Hell while you are still alive. What your wife is going to have to do is spend the next several weeks increasing her dose of Lyrica (if that is working for her) until she is able to do something more than pay attention to her pain all the time. Once she gets to that point, she will probably find as much relief as she is going to get*at this point,* until some new treatment is found”

Is it cruel to be blunt?  At this point, the only hope that I can give to anyone who has CPS is that the people that are working on the 501 Charter Committee with me at amazing. They have carried this ball far beyond any goal line that I could have set. We have a name: the Central Pain Syndrome Foundation. We have managed to set up a bank account, so that we can receive seed money donations. Doug Sharp was given us a tremendous outline that we are using as the outline of our Strategic Plan. We have an outline for fund raising , and are working on the materials that we need for solicitations.

I couldn’t do this by myself; I am blessed with a group of people that share the same vision. When I tell new members that there is no cure *now*, I do not mean to be cruel, even if the facts are harsh. The truth is that no one is going to bring us any solace, much less cure, unless we do it ourselves. We cannot wait for someone to help us. We are going to do it ourselves. The progress that is being made on the creation of the 501(c)(3) gives me faith in the belief that we will actually be able to control our future as CPS sufferers.


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