In the very near future we will have an updated and multifunctional website that will knock your CPS socks off! Come back soon to see our improvements and THANKS AGAIN FOR SUPPORTING THE CPSF.
From Louise: I received this comment today on my personal blog, “The Fires of Hell”. It speaks for itself.
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@example.com
YOU ARE NOT ALONE!
The CPSF was started by a highly committed group of CPS patients and their loved ones who are desperate to find a cure for this disabling neurological pain condition. We strive to provide up-to-date CPS information including causes, treatments, patient stories, website links and other important details to help you deal with CPS and remain hopeful while waiting for a cure.
We are incredibly pleased that the Huffington Post chose Central Pain Syndrome as a subject for a live webcast on Thursday February 28, 2013-National Rare Disease Day. We are indebted to Huffington Post for helping us reach a large number of people via the worldwide web. We will continue to strive to make CPS a well known disorder. Please support the Central Pain Syndrome Foundation.
Please support the CPS Foundation by contributing to our Founders Fund.
We’d love your feedback &/or comments. Please note that our website is a work in progress and is maintained primarily by CPS patients. Therefore, we ask for your patience in regards to correspondence and changes in website content.
and probably *more than 3,000,000* CPS sufferers
You are not alone. You are merely unacknowledged.
The Central Pain Syndrome Foundation is determined to change the recognition of this disease across the entire country. Please help us out by spreading the word!
Welcome to the new Central Pain Syndrome Foundation website. We are working to make our site a well-designed resource for CPS sufferers, supporters, the public, and medical professionals.
In keeping with the CPSF’s motto “You Are Not Alone” our front page features pictures and info about a few CPS sufferers and supporters. Here are links to each of their pages.
Now that we have a professional-looking website we will post here regularly. We will report on the progress of the CPS Foundation as we progress toward non-profit status. We will share medical information about CPS and pain. We will share the biographies, stories, poetry, videos, and art of CPS sufferers.
Please share this website and new posts as we add them.
We will make this website into an important resource in our battle to defeat the agony of Central Pain Syndrome.
—If you suffer from Central Pain Syndrome or support a CPSer we would love to share your picture and story. Leave a comment on this page. CPS sufferer Scott Davis designed our logo. CPS supporter Mandy Dumins created most of the graphics.
The Central Pain Syndrome Foundation is a group of CPS patients and supporters who have come together to fight this crippling disease and the ignorance that surrounds it. Today, we ask for your assistance in making the CPS Foundation a leader in education, support and the research needed for an eventual cure.
Become a CPSF Founder by providing the seed money for our Federal non-profit designation costs.
Please contribute generously to the Central Pain Syndrome Foundation Founders Fund.
Hi, I’m Karen Davis, wife of CPS sufferer, mother of two, dental hygienist and secretary/treasurer of the CPS Foundation. My husband Scott was diagnosed almost ﬁve years ago, it was the result of a brain biopsy of what looked like a cyst/tumor near the thalamus. The biopsy came back benign but our lives were changed forever.
Scott was Mr. mountain man! He loved anything and everything outdoors, from skiing to backpacking you name it he did it. As a couple, we shared this love and went on many fun trips together, he even proposed on a ski trip. CPS has taken this from him and so much more. His life has to revolve around controlling his symptoms the best he can. He has to take medication every six hours, see’s an occupational therapist once a week and has MANY different doctors and appointments. It’s very hard to see the one you love in constant pain. I know he’s not the father he imagined himself to be but I try to think of it this way, maybe rather than horsing around like I know he wanted to, he’s teaching us more important values like resilience and strength of character.
For three and a half years I thought we were all alone. We went to the experts in the ﬁeld and were essentially told that Scott just needed to keep taking his meds, keep trying to work and trudge ahead. While that is ﬁne advice it didn’t give us any help on an emotional level. It was then that we found Louise Mowder’s blog, Scott ﬁnally convinced me to read it, and I literally could not believe there was someone who was using his exact same words! I immediately joined the FB group and was again amazed at how many people had my husband’s condition.
I know how hard this disease can be on the family. It is to promote public awareness and support for CPS sufferers and their families that I joined the CPSF. It is because I want you to know, YOU ARE NOT ALONE!
Louise Mowder, Director of the Central Pain Syndrome Foundation, inspired the formation of the CPSF with her Message from Hell video.
We will use this website to:
- report on the growth of the Central Pain Syndrome Foundation
- ask for your help
- reach out to the CPS community
- educate medical professionals, CPS patients, and the public
- report on advances in CPS research and treatment
Please subscribe to our website and spread the world about CPS and the Central Pain Syndrome Foundation.
I’ve had 3 episodes that have led to very significant and untreatable chronic pain.
Apologies – I may sound vague below but that’s just because with the diagnosis comes pretty significant memory loss so I don’t remember anything about that period, or in fact very little if anything that happened yesterday.
The FIRST and the worst is neuropathic pain that has come with a diagnosis of encephalitis. I’ve had damage to both temporal lobes, brainstem, thalamus, hypothalamus, posterior midbrain and regions of both frontal lobes, part of the lateral ventricles however some of this went down with treatment. I’m thinking that although the scarred cells might not be showing up as anything much in MRIs now there is probably still some type of scarring there anyway causing me so many unresolved problems (over 20 medical problems still exist) I’m pretty sure that my central pain is from the damage to the thalamus.
The SECOND is widespread pain that I was diagnosed with in October 2003 when I really strained my arm using a rotary cutter. What that means is that I have what feels like really really bad Fibromyalgia and heightened sensitivity to pain. It’s just sore joints and muscles.
The THIRD is daily headaches that I’ve been experiencing each and every day since at least 2003 sometime.
Specifically about my neuropathic pain diagnosis …….
Basically they said the area in my brain which interprets pain is damaged. It’s difficult to treat this pain because it’s in the circuit of cells around the body
- Neurotransmitters are inflammed and damaged – the disturbance is in the neurotransmission rather than damage to the nerve cell itself. This isn’t able to be proven by tests ie,. misinterpretation of my body signals by my brain
- The brain interpretation of the circuits of cells around my body is damaged
- Lowered pain threshold
They said that even if pain related medication were to work, it would probably only reduce my pain levels by 30 – 40% anyway.
I was diagnosed in November 1997 however the pain didn’t start until about 6 – 12 months later.
It started out as “tingling” however after ? time it worsened until it became a constant burning pain that happens all over my body but mainly on my extremities, especially my legs. So while I’m sitting and typing this I can also feeling burning pains in my hands that feels pretty bad because I’m “exercising” my fingers and hands with the typing.
I’ve been to a very reputable pain clinic here in Sydney but they were unable to find any meds that could help me.
So far I’ve tried these and none had any effect or else side effects were too bad –
Tryptonal – up to 150mcg
Neurontin/Gabapentin – up to 1,200mcg
Zoloft anti-depressant – dosage made me too spacey, too hungry and neutral mood
Zyprexa – 2.5mcg – stopped because of severe physical fatigue
Tramal – 200mcg
Neurontin – up to 2,400 mcg – actually “phased me out”
Prozac antidep. (Fluoxetine) – up to 2 x 20mcg tablets – side effects too bad – including anxiety, concentration problems and increased urinary needs
Avanza antidepressant – helped pain but hunger was astronomical
Effexor – 225mg
I’m still taking the Effexor because whilst it doesn’t help the pain much, if at all, it helps me with my metabolic disorder
Things that make my pain worse
- physical activity
- tight clothing – so I wear loose and soft clothes, no bra and no jewellery
- pressure on my legs when I’m in a sitting position – so I end up using foot stools when sitting on a chair, and lifting my legs when on a recliner
- sometimes it’s bad enough that I’m unable to “distract” myself in a fulfilling way
- constipation – pushing faeces results in incredible, horrific pain in my legs for the rest of the day. Unfortunately I suffer from serious constipation so I’m regularly faced with absolutely horrific pain at least once a week.
Things that help
- Psychological stability – happiness
- Elevating my legs and being able to stop them pressing on any surfaces (chairs, lounge etc)
- Using an electric blanket – even in summer! – the heat somehow helps to “mask” the pain – however my feet are too painfully sensitive that the heat worsens the pain and so I am always sticking my feet into the cool edge of the bed or out of the blanket.
- I use flannelette sheets because they don’t get “cold” like cotton sheets. Cold sheets give me a cutting pain.
- In summer my feet feel bad enough that I use a cool-pack to try to “cool them down” because the burning pain is so intense.
- It’s psychologically helpful to know that there are others that face similar problems – that I’m not “alone”
I am Ursula, 83 years old. i had a hip replacement in 2004 on the right side, which i call my good side. the left side is affected by thalamic pain syndrome, also referred to as dejerine roussy syndrome [ed.: also called Central Pain Syndrome]. even many neurologists are not familiar with the syndrome. it is here to stay with me until i die and was acquired when i was 63, the after effects from a very mild thalamic stroke. all the pills i take only take the edge off the pain. there is no known cure. it gets worse, as the years go by, and it also affects wider areas on the affected side. the early focus of mine was the left axilla and the surrounding area, spreading on select areas down the arm and hand, and slowly creeping down the left side into the leg and down.
my neurologist gives me most of the pills i ask for. i would have been lost through the years if it had not been for the cps alliance correspondence, from where i got most of my ideas of what works and what doesn’t. i am also a “googler” and research the stuff i take.
in addition to the left hip, my left knee is bothering me quite severely. i hope I can relieve this without a knee replacement, which i would not consider at this time.
at the front is gabapentin, which i have slowly titrated to 3,900 mg per day. it has no upper limit.
- i take one lotrel 5/10 for my bp and some cinnamon in the a.m.
- i take 1-0.5 mg alprasolam for sleep in the evening
- i take 2 NORCOS a day – they do not offer much pain relief.
- i take one baby aspirin daily.
i have been mostly housebound. i read and write a lot. i have written a lot of poetry. above all, i have tried to put the suffering of cps into rhyme.
to come to an understanding of the often misdiagnosed syndrome, i have written poems about this suffering and the way it affects our lives. if you ever have time and, of course, interest, you actually might enjoy the poems giving a broad understanding of what ails us.