Home » Uncategorized » From Louise: I received this comment today on my personal blog, “The Fires of Hell”. It speaks for itself.

From Louise: I received this comment today on my personal blog, “The Fires of Hell”. It speaks for itself.

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Hi all. I have searched for a place to discuss CPS with others who suffer, and wonder if I have found that place?

The story on this page about sleep made me stop and read deeply. Truly, I understand the problem. Had if for over two years and am ready to make it end by ending me.

Until today, I did not know of the terminology CPS, as I am told it is neuropathic pain. I will settle for CPS, as I can spell that much easier.

Today is my 58th birthday and I am so depressed I just want to cry out for help. I am divorced and very much without family or friends and am living in “the perfect storm” of hell. Three years ago, massive ischemic stroke. Amazingly did not die, or become totally disabled. Fact is, I lived a year, without medical assistance, no insurance, and had no idea how lucky I was at the time, to have only come away with a lot of trouble in the left leg, and essential loss of my left hand. I had a memorable day in the park, throwing a football around with my children a month after the stroke.

A year after the TBI, all hell began to rain down. The brain damage started to become very apparent, and I began to physically come apart. About that time I finally pushed through to a disability claim so I could see a doctor. She is a god incarnate with regards to her manner and willingness to believe me and help me. She is a neurologist, and after I explained my pain symptoms, and we worked on issues, she determined I have no neuropathy, but that the pain is all from the body attempting to repair all the blown up nerve connections, which has wiped out my entire left side, toe, to ear and all points in between.

The pain is like nothing I could ever imagine. I read others description and just nod my head, I have that, I have that, never had that, I am in big trouble since I am totally alone in all of this.

The brain damage is extensive and since it took out most of the right frontal lobe, my emotional controls are gone, and in addition to congetive, anlytical, short term memory, and host of other functions, depression is rampant between the depression from the brain damage and end of my normal life, when I add in the CPS, I spend a lot of time on the suicide hotline and am simply screaming for help and relief. None has appeared so my time on earth is very limited, since the only way to end the pain, is to end the life

Those of you who suffer this pain, my heart goes out to you. I would give you a warm, affectionate, caring hug if I did not know the pain would be unbearable. I cannot stand because of the pain in my feet. I cannot sit, because half of my rear end is on the left side :-) and is just hurts to much. I cannot lay down, because eventually I need to roll over and that means the left side is touched and so I can’t stand, sit, or lay down. I still live, but I don’t knowy why.

I was told two years ago, that I would try dozens of meds, but that in the end, the pain will never go away. She was correct, I have tried more than a dozen to no avail. Most of the “miracle” meds, lyrica, gabapentin, you name it, all bring me crippling side effects, from nausea, to uncontrollable thoughts of suicide and major attacks of vertigo that make life unlivable.

I do not know where to turn, as without the brain functions, its hard to deal with the pain, and the pain affects the brain via depression. I only receive SSI payments, and of course cannot work. I lost my home an all possessions, along with every penny, and lived for time on money from when I had to give away my home, but that is long gone and now I have not enough money to pay for a home, or any other necessities.

It is such a brutal existence. I see at least one doctor a day, every day for months. Mental doctors. pain doctors, physical therapists, you name one, I see them Pschologist, Psychiatrists, social workers, the whole gamut, but they can’t help until the pain goes away and its not going away as long as I am alive.

I guess no one gets what they truly hope for in life, but I never thought I would be the end at only 58 years of age. Worse than most all of it, I will never be able to afford to live, as SSI does not provide and I am locked into that pittance of a payment, every month, forever. IF I live four more years, I can “retire” at 62, but that is a miniscule increase of only a few hundred$ and will mean medicare instead of medicaid. I hate being on welfare, but medicaid pays for nearly everything. medicare will mean I need a supplement an that will take way any increase I might see from SSI to retirement.

IF you are in pain that makes you wish to die, I want to talk with you, because I am, and its incomprehensible to most people.

curse the luck, look at the economy that had me out of work when I had the stroke, which meant I cannot have SSDI. the difference in help financing would have let me keep my home, but dramatically, it means I am going to die. Its not the forum to complain about they system, but I am one who can understand chronic pain 24/7/365 My heart goes out to anyone there. The docs ask for a number from 1 to 10. I ten is being completly on fire, while being pummeled with a baseball bat ever minute, I am at 16, and most physicians think I am lying about that.

thanks for the space. You are in luck, I am worn out from typing with one hand, the right one doesn’t work, so I gotta move around, and sorry that I am too weary to proofread all of this.


John is the reason that we are creating this Foundation. Right now, there is NO one truly searching for a way to end John’s anguish. All of us who suffer from CPS know the utter extreme of pain that John is suffering, because we have felt it. Even if we do not feel it right now, we have the horrible knowledge of what it is. That knowledge, once learned, is impossible to forget, and impossible not to fear. Right now I – or you _ may be in a much better spot than John, a 5 or a 4 instead of a 10 – or a 16.But you know what a 10 and even a 16 feel like.

For me, the thought that I could someday end up as a 10 or a 16 is the ultimate goad towards making this organization work. That may sound selfish, but it is a selfishness I urge you all to adopt. Help the Central Pain Syndrome Foundation because you, too, may end up like John. You may – or someone you love dearly, who has a medical tragedy still in front of them – pay feel this freezing, burning, electrical lash of the neurological Devil, the lash that never flicks off of your skin, but burrows inside you and infiltrates all your muscles like an acid. So please forward this website, and its story, to anyone that you feel should understand more about Central Pain Syndrome, and our mission here.

If you wish to write to John individually, I urge you to do so. There may not be much that we can always do for one another, but the human hand of comfort is felt not only in person. It reaches through electronic written means as well. You can reach John at [email protected]


  1. staffy says:

    Hi john,
    I totally understand what you are going through as I m also in super chronic burning pain 24×7 till having difficulty sitting, lying down, stand or even walk. I m hoping the damaged nerves regeneration will speed up and give me a painless life back soon. Take care !

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  21. Kimberly Dawn says:

    Laws Making Treatment Impossible

    Hi, I’ve had this torturous condition for 8 years after Brain/Spine/CNS injury from being in a rental with a slow carbon monoxide leak for several years. It’s a miracle I’m alive several times over, but I’ve found myself wishing for death many times from all the problems trying to get treated over the years.

    Once I finally found treatment that took me from a 15/10 (ungodly horrors) to 7/10, able to function and be grateful for what I could do…even getting ready to try to work part-time again, with animals, who are great for the spirit as it is…

    Now states are passing worse and worse laws, that do no allow doctors to treat patients with real, proven pain conditions, especially the insidious, torturous ones like Central Pain Syndrome. I was diagnosed at Cleveland Clinic years ago and told I’d have to take pain meds for life, unless a cure was found.

    Though I was an engineer and consultant prior to all this and have a fighting spirit, so I’ve done all I can to research constantly, trying all kinds of things other than pain meds. I’ve even gone off my pain meds several times on my own before, truly believing that I was being healed, as I was getting alternative treatment and have spiritual beliefs in a loving God/Creator/Universal Source. Yet each time, I would end up back in bed being relentlessly tortured.

    And when I say tortured, I mean that literally… feeling like a prisoner of war with several people with crude instruments attacking different parts of my body. It feels like my nerves have been struck by lightning and set on fire; like my bones have been covered with “Icy Hot”, filed, and beaten with hammers; joints feel like being scorched with a soldering iron; muscles feel like being put through a meat grinder; skin feels like several cats all over me, clawing in different directions; jaws feel like being drilled; head, face, teeth, eyes, etc…it all hurts.

    And when I say a 15 out of 10, when I first started out with such ungodly pain, what I thought was the worst possible pain soon proved to get worse and worse. The sensitization makes the pain we feel way worse than “normal” people (those without this insidious condition) would. I’ve had tests showing the pain is real.

    Anyway, this false “War Against Pain Patients” is ridiculous. Now they’ve moved to just wanting to do dangerous spinal and brain surgical procedures that often leave people way worse, and have left people paralyzed and dead… all in the name of making tremendous amounts of money (which can’t be compared to by the small amount made with pain medications that have proven to work for years and not be dangerous unless most often misused by drug addicts, or by medical malpractice (rampant with the current medical model that doesn’t even leave doctors time to look at patients’ charts!).

    Though now that they’ve made doctors and patients be scrutinized and treated like criminals…which was at least still allowing people who truly needed it to receive treatment, now states, like Ohio are now passing laws that limit the amount of pain medication that a person can take. So people with our condition cannot possibly get the treatment needed and will be FORCED TO DIE because of the pain leading to high blood pressure, heart attack, stroke, etc., or just plain suicide because it is ungodly and unbearable.

    What can we do about this? All the while, I just saw a story today about killers in prison being allowed to get elective surgery!!!!

    I will do whatever it takes to get this information out there before I’m forced to die. What do we do? I’m writing a book and possible blog detailing the horrific things I’ve been through with all facets of the system. It would read like fiction, because people could not possibly fathom the kinds of things that are happening.

    I’ve tried all kinds of alternative things, until I was left with no money, having lost everything. I even went to my psychiatrist (who knows that it’s not a psychological condition) to try antidepressants, more anticonvulsants, etc…. anything that could help the pain other than pain meds. Except every thing I tried almost killed me with Long QT Syndrome. These medications can affect the QT interval in the heart. Long QT Syndrome is the kind of electrical heart condtion, where people who seem health, suddenly drop dead.

    Who can we write to… go to present info to… get petitions signed with so many signatures the white house has to investigate, etc.?

    And also, does anyone know what happened with centralpainsyndromefoundation.com website? It says the website has expired. I know the organization has gotten non-profit status. I’d like to participate with it in any way possible, as well as whatever I could possibly do to assist anywhere else. I will not be forced to die without getting everything I’ve been through and the horrors involved in the condition and the mis-“treatment” of people with this condition.

    Thank you.

  22. I’ve tried thinking positively, that things would change as people focus on Light and Love. But in the meantime people are dying horrible deaths and being forced to do exist horrific so-called “lives”. I’ve lost everything, have been nothing but a burden on my family, who’ve actually emotionally and physically abused me, leaving me with broken bones to boot. I could fill numerous books with the atrocities I’ve been through, that would read like pure fiction.

    My body is getting barraged not only by constant pain signals but by the tearing down of the body’s systems unable to cope. I must do something to let the world know what is actually happening and/or work to try to change things somehow… before I’m forced to die.

    Please tell me what I can do. Thank you so much for “listening”.

    And I’m so sorry anyone else has to go through any of these ungodly horrors, not only with the medical condition, but with the mis-“treatment” from the medical community, government, supposed loved ones, etc. May you all be blessed to find the peace and joy you so deserve. Much love.

  23. Toni says:

    Hi Louise, I too know “The fire from hell!” Mine came on from a minor (only because It was caught in time) stroke that originated in my Thalamus gland. I have been diagnosed with Thalamic pain syndrome but I am finding out it has been recently changed to Central post stroke pain syndrome or CPSP. You can’t move, sleep, eat a hug from my daughter makes me scream in pain, she’s afraid to come near me anymore because she’s afraid of hurting me. So the depression, that word doesn’t do the sadness justice. I would end it all if I didn’t know the people around me, like my daughter, would suffer themselves from me doing something like that. All you can think about is the unbearable pain! It’s like birthing a child while being dragged up a hill of of hot glass shards and then they throw in a beating with a bat covered in spikes just for kicks! Your thoughts just start flip-flopping …oh my god the pain!…just end it….the pain…just end this…PAIN! It’s a 24/7/365 TORCHER! Taking a shower, getting dressed, brushing your hair &a teeth is all excruciating only to go to a doctor who looks at you like you crazy tells you to go to a shrink because your “crazy” why don’t they just bunch you in the gut! It wouldn’t be as depressing. People need to understand what people like us go thru and why we push on everyday! People and especially doctors must learn about people like us and maybe a little understanding and compassion. I hope and pray for you Louise…I pray you get help for your pain! Remember there are people out there who don’t need to know you personally to care for and respect you and I’m glad I can be one of those people

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