About the CPS Foundation

We are a group of Central Pain Syndrome patients and supporters who have come together to fight this crippling disease and the ignorance that surrounds it.

The mission of the Central Pain Syndrome Foundation is:

  • To increase understanding of Central Pain Syndrome, its symptoms, causes, and treatments;
  • To help ensure quality medical care for those suffering from CPS;
  • To energize science to find a better treatments, and eventually a cure for the disease;
  • To improve the lives of patients, their caregivers and families;
  • To create a network of people dedicated to achieving these goals.

88 thoughts on “About the CPS Foundation”

  1. Hi I had a stroke nine months ago and I have CPS in my left side, have anybody with CPS tried perispinal etanercept injection?

  2. hello and i’am new to this sight, I have had the central pain syndrome for years and I diagnose myself. then took it to my dr and he confimed it. it all started in my feet then just started traveling up my chins very very painfull. and the only place is has not hit my abs and butt.

    1. I’d like to see apepls to apepls comparisons (in the U.S.).At the minimum wage level, no company can get away with paying men vs women differently. (I can see an attractive waitress making more tips than waiter but that would be with any tip based wages, I’d think.)Even at, say, engineering level, I don’t know how companies can get away with paying men vs women differently for the exact same job. For the same experience and same skill set (and job description), I’d expect the pay to be the same.I can’t see any public job like teaching could be discriminated, either.I know with relatively set fees like doctors, the amount that the insurance co will pay won’t differentiate between male and female doctors. It all boils down to how many patient you see per day (how popular you are will the patients). My sister is a MD and makes as much money as she wants (with fixed rate per patient). The more she sees, the more she’ll make. There is no difference between male or female, as far as I can tell.So, what other jobs allow companies to discriminate between male and female?

      1. Hi.. um… I’m so sorry – perhaps I missed it. How is your statement about Central Pain Syndrome? Is it about doctors missing it or not understanding it… or insurance? If you could help me understand, that would be great. Thank you.

    2. Hi Jeff, I have been doing research on CPS and ariccdong to the NINDS (National Institute of Neurological Diseases and Stroke) state that there is no cure at this point for CPS. I can understand your doctors wanting to take you of the drip, but I would be asking additional questions before any major procedure is done and then do your own research on whatever procedure they may want to do. NINDS has received $4M in funding to study brain and Neuro diseases such as CPS, but it will be a while before there is forward progress on this disease. I don’t know what your specific situation is, but to have a drip, you had to be in severe pain and I am sorry. I hope that all of us who are suffering from this crippling disease will soon get some relief.

  3. I have just been diagnosed with cps/fm. The pain goes from head to toe and all points in between. I try not to complain. I don’t know how much longer I can work.

    1. Sally, yes I am familiar with the pains running from the top of my shoulders to my toes — 24 hours a day — 7 days a week and doing so for basically 5 years. Had a discovery experience and learned how to reduce my pain to zero or almost zero 24 hours a day and have done so for basically 25 years. I am not wanting to sell you anything or talk to you for a price but will willing tell you what and how I learned to control my pain.

  4. Hi, I was diagnosed with CPS last December, I also suffer from Myofacial Muscle Syndrome ( pre-Fibromyalgia) as well as Severe Spinal Damage and Spinal Nerve Damage. This was all due to a car accident in 2006. I am no longer able to work. I am so glad to find fellow friends at a website about CPS. I also found that the National Institute of Neurological Disorders and Stroke is working on finding a cure. I tried the two Tricyclic medications the drs suggested, Nortiptyline and Gabapentin and had bad reactions. Just FYI: My doctors have been trying to get me to do the spinal injections of Depmedrol. But I found out recently that this drug has never been approved for spinal injections and has severe side effects. Please be cautious if any doctor wants to inject this into your spine, ask alot of questions.

    1. I suffered severe side effects from spinal injections, 1st one was with Celestone + Marcaine – 2nd was with Depro Medrol, I was NOT warned these drugs were NEVER approved for spinal injections; I believe these cause “adhesive arachnoiditis” but of course cannot find a doctor to diagnosis this condition, yet I have PROOF by looking at the MRI, spinal nerve clumping + empty spinal sac; I will never trust another doctor; This all started after suffering a workplace injury and denied medical care, by workers compensation;

  5. I got CPS from having two holes punctured in my spinal dura during discograms, then having ESI after ESI done to “help” the pain. I got no other help than that because my Worker’s Comp carrier practiced “Fail First” policies. That mess gave me adhesive arachnoiditis at 5 levels in my spine as well as central pain syndrome, CRPS Type 2 from peripheral nerve lesions, cauda equina syndrome and severe epidural fibrosis among a host of other – lesser – pain patterns. Thankfully, a treatment regimen of high dose opioids plus neuro-active supplements that REALLY saved me – bringing me from being completely bed bound to a life that is once again filled with love, joy and paced activity. I still can’t sit and I will always have pain, but my pain is now controlled to a low roar rather than a debilitating banshee shriek.

    1. OMG!!! I started tearnig up when I found this website! The the song Breath in Breathe out by Mat Kearney started playing. My new theme song. Here are the lyrics: Breathe in, breathe out,Tell me all of your doubts,& Everybody bleeds this way,Just the same.Breathe in, breathe out,Move on and break down,If everyone goes away i will stay.We push and pull,& I fall down sometimes,I’m not letting go,You hold the other line.Cause there is a light in your eyes, in your eyes.Hold on hold tight,From out of your sight,If everything keeps moving on, moving on,Hold on hold tight,Make it through another night,& everyday there comes a song with the dawn,We push and pull and I fall down sometimes,I’m not letting go,You hold the other line.Cause there is a light, in your eyes, in your eyes.There is a light, in your eyes, in your eyes.Breathe in, and breathe out.Breathe in, and breathe out.Breathe in, and breathe out.Breathe in, and breathe out.Look left look right,To the moon in the night.& everything under the stars is in your arms.Cause there is a light, in your eyes in your eyes.There is a light, in your eyes, in your eyes.There is a light, in your eyes, in your eyes.There is a light, in your eyes, in your eyes.

    2. Unfortunately, QuotesChimp can’t look to state governments, who are supposed to regulate insurance sellers and educate consumers and who, in the words of the Conference of [state] Insurance Reg�ulators themselves, are “underfunded, understaffed, and under-equipped.” Nor can you rely on the media, which, with a few notable exceptions, has found the “insurance beat” too myste�rious. Even a business editor at the Washington Post confessed a few years ago that “nobody around here understands insurance.” Well, here is a secret unlocked: Insurance is purposely made mysterious to exclude you from any role other than to sign the check.

  6. Hi Radene,
    Would you please give more details on the neuro-active supplements that you found to help you, I am sure anyone suffering with CPS would be greatly interested to see if they work for them, I am already researching them to see if the would help me. In my research so far, I have found that there is a list of natural anti-inflammatory foods that is available to everyone that can be purchased from any major grocery store or farmers market store. Anyone interested just look up on the internet (Anti-Inflammatory foods) and a list should appear, every ones taste will be different. I have tried some of them and they do work for at least temporary relief, but at this point with the amount of pain I am in, I am will to try the neuro-active supplements.

    1. That’s so cute! It looks like someone will be cirneheg along with you when you do get an agent. Of course, once that happens she may expect a Junie B. book in the mail instead of a contract.

      1. Obviously, Mat you are totally incompetent and arrogant. This is a total insult to anyone suffering with CPS and FM and frankly is a disgusting comment. This website is for people who need a voice and that are suffering from this debilitating disorder. If you can’t handle the heat get out of the conversation and get off this website. To all my CPS friends, Thank you for your support.

  7. Of course, Crystal! Please remember that these supplements are meant to work in conjunction with whatever your pain control regimen is. The supplements themselves don’t control pain although your pain control will be helped when taking them. What they do is (paraphrased lay person speak here) — they help the feed and condition nerve related tissue to make your pain regimen – no matter what it is – work more efficiently in the body. They are Pregnenolone (average dose is 60 mg. to 150mg) it is a building block of Testosterone so let your primary care doctor know to check with a CBC once in a while. Did you hear a story a little while back that said “Long term opioid use decreases Testosterone levels?” It’s not the opioids that is doing it, it’s the CONSTANT, SEVERE PAIN that is lowering the Testosterone, but since main stream medicine has never EVER studied chronic pain as a disease (IOM “Pain Relief in America” – 2011 http://bit.ly/OK0o3q ) they dont even freaking know that! GRRR! PET PEEVE!!! okay, I’m better now.
    Next is GABA: Gamma aminobutyric acid,,, or something like that. I think there is just one dose for that … but now I’m not sure. Xp
    Taurine is another good supplement for any kind of severe pain.
    One that works well for me is bizarre… but this substance has been shown in certain studies to help the dopamine re-uptake in those with centralized pain issues. Ready? Caffine. Yeah .. no lie. I take it a few times a week. You can buy caffine supplements where they sell the wake up/go to sleep OTC meds in your local drug store or Walmart.
    Dr. Forest Tennant has done great research on this subject and I think he’s the only guy out there right now doing so. I’m happy to admit HE is the doctor that saved my life nearly 9 years ago, who finally found meds that worked for ME. Check out his article “Hormones and Pain” or some such title at this site http://www.foresttennant.com.
    There’s more but – you know how it gets – I just can’t type anymore.
    I hope this helps.

  8. The NE Baptist Hospital just called me and said I have Central Pain Syndrome. They won’t work with me until my regular doctor arranges to send me to a withdrawal clinic to get me off the morphine. I’m thinking they will give me some medications while their taking me off of the Morphine. I had a morphine pump for 6 years which got infected and had to be taken out. The hospital discharged me with oral morphine. At that point the hospital, not NEBH, but RIH sent me home with pills.

    1. hello gorgeous lady … wow what a dhlgietful card .. so special .. love it … hugz xI have not forgotten you I intend to partipate in lessology again next month .. been flat out looking after Baden since his op and lots of deadlines with scrapbooking … so March is a little less busy and I am going to join in with some challenges.. I am for sure xoxoxoox

  9. Hi Jeff, I have been doing research on CPS and according to the NINDS (National Institute of Neurological Diseases and Stroke) state that there is no cure at this point for CPS. I can understand your doctors wanting to take you of the drip, but I would be asking additional questions before any major procedure is done and then do your own research on whatever procedure they may want to do. NINDS has received $4M in funding to study brain and Neuro diseases such as CPS, but it will be a while before there is forward progress on this disease. I don’t know what your specific situation is, but to have a drip, you had to be in severe pain and I am sorry. I hope that all of us who are suffering from this crippling disease will soon get some relief.

  10. Crystal, I think your using the word ‘drip’, to refer to the morphine pump I had in me for 6 years, am I correct? Even though it’s not perfect, the oral morphine I’m taking is a definite help to my being able to function in the world. If anyone reading these words knows how morphine is weened without having the patients pain go beyond a 10, could you please let me know. Thanks Crystal for responding so quickly..

  11. Hi Jeff, Yes I was meaning the pump. I am so glad that the oral meds are helping. As far as going beyond the 10 in pain level, I would like to know that as well.

    1. WOWIE!!! I can’t believe all the hard work you have been doing!!! I can’t wait to see how the new cessals look – the little peak of the stamp class page looks awesome! I’m looking forward to the new holiday class because that is the only one I have missed so far!!! I LOVE your peacock fabrics so I’m heading over to Etsy and I will keep my eyes peeled for your giveaway!You are amazing!xox

    2. Awww take care of your eye…that must hurt…Iam a mother of two so I know.Very cute card…love the cuolors and your interpretation.the corduroy brad and the handmade felt flower is esp awesome.take care and nurse your eye…and i am very curious about the SOMETHING that you mentioned.

  12. Hi Radene, Thank you for the info, I will do some research and check these out for sure. I will have to be very careful, I have a very high sensitivity to drugs period, all drugs, which doesn’t help with CPS. I will update as soon as I know more. Thank you

    1. Good luck coming up with a plot and crchaaters you love for this year’s NaNo! I’m the same way I have to have everything figured out before I write or I’m likely to drop the whole thing midstream. Definitely *not* a pantster .I was also stopping by to let you know that I gave you an award over on my blog. If you’d like to participate, hop on over to read the rules .

    2. I got CPS from having two holes puutrnced in my spinal dura during discograms, then having ESI after ESI done to help the pain. I got no other help than that because my Worker’s Comp carrier practiced Fail First policies. That mess gave me adhesive arachnoiditis at 5 levels in my spine as well as central pain syndrome, CRPS Type 2 from peripheral nerve lesions, cauda equina syndrome and severe epidural fibrosis among a host of other lesser pain patterns. Thankfully, a treatment regimen of high dose opioids plus neuro-active supplements that REALLY saved me bringing me from being completely bed bound to a life that is once again filled with love, joy and paced activity. I still can’t sit and I will always have pain, but my pain is now controlled to a low roar rather than a debilitating banshee shriek.

  13. Crystal and Jeff, and everybody else… HI! Drug sensitivity: ME TOO! I have to look this up about CPS but “Multiple Chemical Sensitivity” goes along with my adhesive arachnoiditis (which is the cause of my CPS &, in a way, my CRPS type2) only 2 opioids in the whole drug universe work for me to control the pain without overwhelming side effects. I don’t generally share what they are because its not the meds themselves that are the key; it’s the fact that those two substances (for reasons unknown to me or my docs) are THE ones that work for me specifically. Most everything else fails to help and fails BADLY! They either make me – a general cheerleader of sorts – feel abjectly suicidal.. or I’m throwing my guts up… or my eyes are twitching and that’s on top of the fact that the pain is roaring at full boar which was so severe (as you all know) that I was actually going into physical shock once a month! So I know just what you mean about drug sensitivity. Also, sweet Crystal: I just read up top that your doctors had suggested Depo-Medrol injections. You did the right thing by rejecting them and warning people. In fact, it’s best to …

    RUN!!!RUN SHRIEKING OUT OF THE OFFICE AS FAST AS POSSIBLE!!! THAT plus Kenalog – Marcaine at different times is what CAUSED my arachnoiditis in the first place then each subsequent ESI (epidural steroid injection) was like feeding my spine “adhesive arachnoiditis Miracle Gro!” The black box warning on the product is actually ON the stinking BOX! But doctors are still taught that this is the go to procedure for moderate to severe back pain. It’s insane! There used to be a picture of the box with the warning on the site “EndDepoNow.org” That stuff is EVIL and they often want to blackmail you by saying “either you get the injection or we will give you nothing for pain.” I had worker’s comp and until I fought to get out in favor of my own insurance, they had done so many injections at 3 and 5 levels at a time, I actually had 79 needle sticks to my back by the time they were finished! ARGH!! (I get a scosh passionate about this – can you tell?)

    NOT that I’m here to sell, but I just published my first ebook about this very thing last week. Well, about more but during this time. It’s called “The Heart Tree” – A Surprisingly True Short Tale on Smashwords.com but it’s also at Barnes and Noble and the Apple Store I think. It’s just $1.49 and about 2300 words. I’ve been writing a larger book for years and just when I think I’ll have time to finish, life brings some other surprise and it goes on hold. SO really the story used to be my Chapter 19 “Dark Night of the Soul” and talked about that time we all get to, especially as people with severe pain.That time of decision when we just feel at the end of our rope and are wondering if it’s worth living at all. I got there BECAUSE they (workers comp) kept wanting me to do more epidural injections that weren’t helping BUT they were hurting me more and more each time and…. GRRRR. So yeah, my “dark night of the soul” came and after a night of fighting and praying and screaming BLAH… made a decision, anyway. Then I asked a question and these really cool things followed it so, TADA…. 9 years later,I write a story & thats’ what it’s about. (wow, I’m a lousy publicist) and that NOT why I’m here. I just thought it seemed pretty relevant as here they are… still pushing what has hurt so many. SO no injections darling Crystal ESPECIALLY since you already have CPS. (I really wanna smack your doctors right now.) Thanks for indulging my rant, kids.

  14. I can understand if the morphine pump hardware is giving you problems that the dr.’s would want it taken out. but why on EARTH would they want to wean you OFF morphine?!?! The VERY sad thing is like I said in another post here, the medical community is SADLY LACKING when it comes to their knowledge of treating pain (IOM study http://bit.ly/OK0o3q). They probably want to either randomly lower your dose – which is ill-conceived and complete nonsense if the dose is working for you. Or they want to try you on a different opioid that might be more suited to your body chemistry. If the later is the case then you can generally go straight from one opioid to another of Due to having CPS and, in fact, ANY serious pain syndrome your brain has changed to make pain a standard body function just as it triggers your heart to make a pulse. Sucks, but it’s true – it’s called “neuroplasticity” and here’s an article by Dr. Steven Richeimer and his research on the subject.( http://www.helpforpain.com/arch2001mar.htm ) Neuroplasticity is basically how the body turns acute pain into chronic pain. Therefore when chronic pain becomes “intractable*” like ours is with CPS, this process has happened a ton of times! *(Intractable Pain – Pain that is incurable, hard to treat, and of such severity that it causes actually biologic effects in the body) A quote from an otherwise so/so article about chronic pain sis have this great quote. “… This could be one of the reasons why chronic pain becomes such an issue: the body no longer knows how to relieve the pain or how to feel the sensation of lessened pain.” WE don’t do that, our HEAD(i.e.mind. will, emotions) don’t do it, our BRAINS do it and we have no control over that whatsoever. That is why we need outside help to control what’s happening on the inside. Knowing that, I’d say we need pain mediation like a diabetic needs insulin. Our body no longer creates the endorphins needed to quell pain by ourselves and “dependance” on a medication is NOT AT ALL “addiction.”
    Ok, so now that I’ve restated the obvious 90 times… sorry. I get on a sop box that is really aimed at your doctors with a fur/ I want a big flaming red face raucously screaming out to them “whats wrong with you?!?! cant you see the person is in pain?!?!?.
    Ok just one more resource and perhaps you can take this to your docs and ask them why they want you off the morphine when a lot of resources show that may not be the best course of action KNOWING that uncontrolled pain will be very bad on my heart and adrenals. It’s another from my go to doc for research.. Dr. Forest Tennant. It is a PDF file taht can be printed out and brought with you to your doctors appointment, giving you both something to reference together. With as little as most mainstream docs know about the body in pain, we have to help them to help ourselves as much as possible. http://www.foresttennant.com/pdfs/IntractablePainSurvival.pdf
    I wish you the BEST of luck and don’t let them leave you in screaming pain, OK? OK!

  15. Radene and Crystal, have either of you heard about a Central Pain Syndrome patient getting their pain lowered permanently, by having many massage sessions? Please respond. Thanks Jeff Guy

    1. Hi, I was diagnosed with CPS last December, I also sueffr from Myofacial Muscle Syndrome ( pre-Fibromyalgia) as well as Severe Spinal Damage and Spinal Nerve Damage. This was all due to a car accident in 2006. I am no longer able to work. I am so glad to find fellow friends at a website about CPS. I also found that the National Institute of Neurological Disorders and Stroke is working on finding a cure. I tried the two Tricyclic medications the drs suggested, Nortiptyline and Gabapentin and had bad reactions. Just FYI: My doctors have been trying to get me to do the spinal injections of Depmedrol. But I found out recently that this drug has never been approved for spinal injections and has severe side effects. Please be cautious if any doctor wants to inject this into your spine, ask alot of questions.

    2. Brokers. QuotesChimp often use the terms “insurance agent” and “in�surance broker” as if they were interchangeable. They are not. An agent has a contract with one or more insurance companies and represents the company. The broker represents the buyer. The broker’s job is to search among all insurance companies in the market and find the best policy and price for the client. Brokers are paid by commission from the insurance company. However, the price of the commission is included in the premium you pay (as is true with agents). Brokers are licensed and often will work with company agents to purchase the insurance or will sometimes order it directly. Since brokers represent the buyer, they may be more willing to fight for the client than agents who are tied contractually to the companies they represent.

  16. One other thing, I want to know if anyone out there has heard of any CPS patient taking Amitriptyline or Paxil and having less pain thereby?

    1. Hi Anthony, I am so glad that my message got to you. CPS is the abbreviation we use for Central Pain Syndrome, the excruciating pain condition caused by a lesion on the brain, brain, or spinal cord. The CPSF is the non-profit that has been created by a group of patients who grew frustrated with the fact that so many of the medical profession have never heard of it, and that there is very little research being one upon it. We aim to change that as we grow, and raise awareness with both doctors and the general public.If what you have in CNS Lupus, which is forming lesions on your CNS, then you very well may have developed CPS. Take a look at the links on the left-hand side of our page. Bring the printout entitled “For the medical profession” to your doctor. Discuss with him whether beginning treatment with an anticonvulsant such as gabapentin is a good idea. It may take you a few months to establish its efficacy for you, since the dosages most of us start on are fairly low, and we often end up taking amount in the thousands of mg. over the course of a day. But if it helps you, your pain will become a low buzz in the background, something that can be forgotten depending on what you are doing.Gabapentin is not an opioid, so there are none of the DEA-demanded limits placed on it as there are with narcotics. I do not know how it interacts with Aricept, but that is something you can research.I understand your frustration at “losing words” while you are speaking – I have the same problem myself, due to mild stroke damage to my Anterior Cingulate. I was an Adjunct Professor before my stroke, and it’s very difficult to teach while you are grasping for the elusive word. You know that it is there, swimming in your brain, but it’s as impossible to catch as a goldfish in a bowl. Writing is now my most cogent form of communication, as it is for me. Thank God for the internet! I hate to imagine the loneliness that people with our sorts of Traumatic Brain Injuries must have endured before the screen and thee keyboard made it possible for us to find, and share with, each other.

    2. Peggy LeGrandeOur sincere coedloencns on the passing of Cathleen.We pray that you all receive comfort from above and blessings in the knowledge that she will always be with us today and beyond.Love,Peggy LeGrandeWillis Ure& families

  17. Jeff; to your first question: no. I’m sorry Darling… but once nerves are damaged it is very rare that they ever grow other healthy nerves or repair what is damaged. I can tell you that the supplements I told Crystal about are the closest thing to helping/feeding the nerves that I know of. But again, it is my understanding that damaged nerve tissue does not heal – thus the devastating pain levels. The best we can hope for is the “neuroplasticity” as we discussed earlier to happen in a good way with new pathways. Also – no, I have never heard of CPS clearing up due to massage.

  18. Hi Jeff, No I have never heard anyone that has stated that massages help either. I have been told to try acupuncture (very expensive and generally not covered by insurance) I have not tried acupuncture, my insurance will not cover it, also some of my friends and family state it doesn’t work. So far the only thing that I have found that works for me is a very hot hot shower or bath. I have the water on hot enough to make my legs turn red (not for everyone). I generally only get a 1 hour temporary relief. I also don’t do this often as it can damage your skin. I only do this when I am having a nerve attack. ( all my nerves firing and spasming at the same time, very painful). Try doing the research on the information that Radene discussed as well as try researching the anti-inflammatory foods as well. A lot of our foods have chemicals, radiation and pesticides in them that our bodies do not similuate. Fyi, to everyone, I have been doing research on the Genetically altered foods for over 20 years and believe me, very bad additives to our food. If any of you want to check some of this out, look up Jeffrey M Smith, books and website as well as Sherry a Rogers, MD book Detoxify or die. Very good information. Also, anyone that is dealing with these type of disorders, you may need to grow your own Heirloom foods and process them yourself to get all the free radicals in your body out. I was just told by my Pharmacist that this would help. I grow my own food with the help of my husband who does all the heavy work that I can’t and I also process my own food, canning and dehydrating and I have found that the foods with no additives seem to help me. I also do not use chemicals in my garden. I would be happy to share any of my tips and tricks to anyone who wants them. However, I will not be available from the 12-16 next week.

  19. Hi Radene, Absolutely true! DepoMedrol is extremely dangerous. Just FYI, Dr Oz had an special undercover investigator on his show on May 7th of this year talking about this drug. What she found was startling and frankly terrifying. On the show one of the drug companies that makes this drug was putting together a 2 day seminar teaching doctors how to inject this in to peoples spines. (2 DAYS!!) Then the were telling their patients they were experts at this procedure. (Disgusting) What are we sheepal?. No we are experiments to the drug companies. And to add insult to injury on the show, a doctor was reportedly stating that he gets kickbacks from the drug company to the tune of $2K per shot per patient. He actually stated that this was a good money maker for him and that he was going to change his practice, to do just these shots and that if he did 5-10 a week he could make a lot of money. I was so ticked off it wasn’t funny. Also, according to the FDA, DepoMedrol was NEVER approved for injection into the spine, the doctors are using what is call (Off Label Use) and it is legal under the FDA rulings. This needs to be changed! Well, needless to say at the end of the show, the investigator found a woman suing one of the drug companies because the injections completely destroyed her body and she was unable to speak, work, walk, anything. She is confined to a wheel chair and her body was so mangled and contorted, it looked like she was poisoned by some kind of gas. She was awarded $10 million dollars. And, Yes Radene, my doctors are refusing to treat me now for anything else. I have actually been told by one set of doctors to not EVER come back, even though I still pay a huge monthly premium. This company will be losing my business at renewal time.
    They do not deserve to be in business. Everyone, please take care of yourselves the best way you can.

    1. I also love your artwork. I look forwrad to checking in everyday to see what’s new. I thought long and hard about what accessorie I can’t live without and it all came down to my canes. After a bad motorcycle accident at the Julian Apple Festival I had to rely on a cane for a while. I couldn’t find any I liked so I started painting my own. “Support Yourself in Style” I say. Now even though I don’t rely on them to walk I always keep one close by.

  20. Crystal and Radene, thank you for responding. I have become a home body with this CPS condition, but I am 73 years old and I suppose there comes a time, with or without PAIN, when one hovers closer to the homestead. I wish I could be home without constantly having my attention being drawn to my left upper arm, which is where my CPS is having its greatest effect.
    Being out and going places doesn’t distract me from all this pain. I only venture out if I really need to. I don’t go window shopping like my wife. Something really special has to be happening for me to get in my car and go out. Has anybody heard of Amitriptyline helping a CPS patient??

  21. Hi Jeff, I have heard of Amitriptyline. It is the same as nortriptyline which is the drug I am allergic too. If you can tolerate the Amitriptyline yes it should help you. However, my doctor stated it could take 2-4 weeks to take effect. When I was on the Nortiptyline before my major reaction, I was able to function better than I am now. I am unable to try the Amitriptyline because it has the same drugs in it as the one that I had my reaction to. So I am kinda stuck with narcotic pain killers. By the way these are the drugs along with the Gabapentin that the National Institute of Neurological disorders recommends for CPS. So good luck and please let us know how you do with it if you choose to try it. Take care

  22. Crystal, Radene, keep me in you mailing list on this comment list as I need all the communications I can get, there is no CPS Anonymous here in Rhode Island.

    1. Hi Jeff and Radene, How are things going. Sorry, I haven’t been around for a while to post. I have had a new symptom and have been trying to deal with that. My pain level skyrocketed to a 10+ for several days. I am still in a high level of pain and trying to get stabilized on the new medication, (Blood Pressure which also acts like a diuretic). The inflammation in my body was so bad I swelled up like the Pillsbury dough boy.
      It has been terrible. I just read Johns incredible posting and I will be praying for him. John if you read this I hope you hang in there. I am sure
      everyone on this website feels your pain and anguish and we are all there with you in mind and spirit. Take care,

  23. hi i live in northern england and have just completed a pain management programme which gave me some self help tools to work with but sadly even this centre of excellence didnt have one doc or medical professional on it who really had experience of cps….they can the talk but dont walk the walk. I do find that a small dose of amitryptiline together with the sr mrphone and gaba i take does now give me a few hours of respite from the nagging never ending pain. I also experience excruciating brainstem headaches when its at its worst and have had constant tinitus since this started after swine flu then transverse mylitis four years back. The search for cure continues while i chose on the most part to live with this demon rather than the demon taking me x

  24. Hi my name is Chris and I have CPS then again most days CPS has me! I’m a C 4/5 Quad since 1984 I was 18 and made the most out of life the first 24 years of my injury. Then 6 years ago I started getting unbearable pain in my Butt, Back and Stomach. I guess living life as a Quad and being unable to take care of myself wasn’t challenging enough fire and ice with shards of glass had to join the party. I’ve had test after test seen Doc after Doc ALL of them clueless so I started doing my own research to find out what was and is happening to me. I have become depressed and was just put on a anti depressant to go along with all the other meds I have to take on a daily basis. I’m sorry but I HATE MY LIFE…

  25. If this isn’t going to be worked I purpose to take it over abd run it as i see fit, as CEO
    I’ll get this up and running. And get spokespeople here. This is taking up space. I see no number for potential suicide victims. No place to help save lives. Rlinquish this project over to me
    So I can get this done and working.

    1. I wish someone would. No updates on research going on. No fund rasing that I can see. People need help!!!! And I can’t find any answers. I was just told by my nerologist that I am out of drug options, because my body rejects them all. The only option I have now is to be in a drug coma!!! Where do you turn for help now!!!! I have to work to pay my bills and they are adding up. There needs to be a contact list for people to get help.

  26. I’ve noticed that when my legs are really on fire that my skin is very hot to the touch. Has this happened to anyone else?

    1. Hello Crystal. I have also noticed that at certain temperatures my skin feels a lot better. it still burns but not as bad. Does this happen to you?
      I have developed a drug sensitivity. My doctor says I am out of drug options unless I want to be in a drug coma. So I have started my own research. I can’t find a trial that I fit that will except me. No one is doing research on people with CPS from a concussion… And I can’t sit by and do nothing. It isn’t in my nature. Every step I take is like walking in lava and I am a Chef. So everyday is a struggle. And I am not about to let this take my life away from me.

  27. Hi AP, Yes, different temperatures bother me, the cold is the worst. I also have nerve damage from a car accident and I have what I call nerve attacks that are uncontrollable and I never know when they are going to happen, so I have found that if I take an extreme hot shower sitting on a shower stool that the high heat relaxes the nerves. Also, I believe a lot of people that have CPS end up with a drug sensitivity, don’t understand why. I admire you for continuing to be a chef, I am not able to stand for very long, I am personally at a point of giving up and the only thing that is keeping me going is my daughter, she is getting married next year.

    As far as the research, the only group that I know that is doing research is The Center for Neurological diseases and strokes. They were given a 4 Billion dollar grant April of 2013 to begin an exhaustive research on central nervous system disorders as well as CPS. But, as research goes, it will probably be 10 years before any positive outcome. They are not conducting any trials yet. They were supposed to report back to Pres Obama on their plans and how they were going to utilize the 4 B, but that report was only due last Oct. So, it is going to be a long time for help with people with CPS. Also, I have develop Myofacial Muscle Syndrome (similar to Fibromyalgia) along with CPS, which there is no cure for either. I am also on a myriad of drugs to try and give me relief. There aren’t enough doctors that fully understand what CPS is and how to treat it. I wish I had more answers for you.

  28. Thank you Crystal. The info you have givin me is very help full. I own a restaurant in Atlanta and I still work 6-7 day depending on the week. Right now I have back spasms 24-7 and the burnig throuhout my body. On top of that all my joints will get stabbing pains at any givin time. But the support I get from my wife and 2 daughters (6 & 9) and my staff keeps me going. My CPS started in Sept. of 2013. So I am still a baby when it come to this. But when things are at their worst I think back to the worst pains Ive ever had. One being kidney stones and the other was surgery on a finger that had ganggreen under the nail. I have to admit that the pain I have from CPS right now doesn’t compete with those 2 pains… That thought keeps me going. If I could make it through that, I can make it through this…

    Congradulations on your daughters future marriage!!! I’m glad you have something to fight for!!! We all need that. I will be honest THIS SUCKS!!!!!!!!
    But I have to keep fighting for me and others that can’t fight for themselves. I am a Leo and I never give up on a fight. My new motto is ” The more I hurt, The harder I work!!!” So don’t give up!! If you ever need someone to talk to I will be here. ap@redskytapas.com Please reach out to me! We all need someone that truely understands. My family knows what I’m going through but they don’t totally understand the extreme pain that we go through on a daily basis… I understand, so please reach out. Email me and I will give you my number so if you need a voice and not just words on a screen, we can talk.

    Thank you again!!!

    In the words of Jimmy V “Don’t give up, Don’t ever give up”

    Your Friend,

  29. Hi Brian,
    I am here also. Thanks so much for the encouragement, It helps to know that someone does understand CPS, the pain, the fight, disappointments as well as looking for the sunshine during the day. I forgot to mention, on this website if you look under Physicians information you will find a full explanation of what CPS does and the impact on the person, It might help with others around you to read it to understand what your going thru everyday. Although, it is graphic, so I am not sure if it would be appropriate for you children, until they are older, But I will leave that up to you since your dad. My ex-mother in law lives in Florida and we are very close, she is a hoot! She loves to visit Georgia, so if I ever make it that way again, hopefully we can come up for a visit to your restaurant.

  30. Psalms 23:4 – The CPS Version

    CPS is my sheperd; I shall hurt daily.
    He maketh me lie down in pools of lava:
    He leadeth me beside the raging fires.
    He taketh my soul:
    He leadeth me in the paths of hell for his name’ sake.

    Yea, though I walk through the valley of the shadow of hell,
    I will fear the pain: For thou art in me;
    Thy doctors and drugs, they don’t comfort me.
    Thou preparest a table of fire in the presence of me.;
    Thou annointest my body with acid; My body runneth over.

    Surely burning and pain shall follow me all the days of my life,
    and I will dwell in the House of Hell forever.

    1. I do. Are there any doctors that you know of, who can treat this condition here in Atlanta. Even the brain certified doctors at Emory don’t know about CPS yet.

      1. Hello Rita,

        Dr. Bragg at Midtown Neurology was the one that diagnosed me. He is a wonderful doctor and understands the pain we go through.
        If you would like you can email me at ap@redskytapas.com. I’m looking for someone to talk that understands CPS. I talk to my family and friends, but they can only understand so much.

        I hope Dr. Bragg can help you. I have developed a drug sensitivity and can’t take meds that help. Drugs either make the pain 100x worse or they try to kill me.

        Look forward to hearing from you,

  31. Hey Brian and Rita, It’s Crystal in Denver, Colorado, I sent you (Brian) an email a week ago that the NINDS may have come up with a new medication and possibly a trial. No open yet, but the new drug is RTX. Unsure of the full name, but the NINDS is trying to get initial approval for a trial and then will begin to request prospective individuals for it. I am still keeping track of them. For anyone else that wants to follow NINDS is National Institute of Neurological Disorders and stroke. I have also recently added COQ10 to my regiment and it seems to help slightly. I hope all of us that are suffering will soon find help and even more doctors that really understand what CPS is and that we are not a bunch of Nut cases. I feel like we all need to be on Mystery Diagnosis on TV and maybe a doctor will actually understand and help us. Thoughts and prayers to everyone who is suffering.

    1. Hello Crystal,

      I’ve looked into rtx and found that all studies have been stopped by the government. They don’t give a reason, but everything has stopped. If you have other info I would like to read about it. I don’t think it will matter much to me because my drug sensitivity has gotten so bad that even Excedrin puts me in anaphylactic shock. Going for more allergy testing this week. Hope you are doing as well as possible.


  32. Hi Brian, Thanks for the update on the RTX. I was not aware that the govt put a hold on it. Sorry you are having so much trouble with drug sensitivity. I think it goes along with the CPS. A lot of sufferers with CPS have reported the same issues. I also, have had drug sensitivity and went through a lot of them to find a few that help. I am not out of the woods though, my legs continue to get worse and now I am losing actual muscle. I recently went to the eye dr and she told me that I had a stroke. That was upsetting. Anyway, hope all goes well with the allergy dr for you and hope they can find something to help you. Just out of curiosity, have you tried Salon Pas Patches, they work temporarily but help. Caution though don’t use too many at once. You might want to ask your allergy dr to test to see if you would have a reaction to those. I was also told that acupressure might help. Just some other thoughts I had. Good Luck!


  33. One more thing I forgot. Since you are a trained Chef, I have also been researching Anti-Inflammatory foods and have changed my diet 180 degrees. That seems to be helping also. Check out Dr Weil well known Naturalistic Dr and Chef. He has a website on his Anti-Inflammatory food list and recommendations. Could be a help.


  34. Looking for ideas!!!!!!!!!!!!!

    My CPS started a little over a year ago. Here is the list of pain I go through on a daily basis:

    -Skin burning – from my head to my feet (average day is a very bad sun burn – bad day is roasting in a oven)
    -Electric shocks – from what feels like 120v to being hit with a stun gun
    -Spams – from my neck to my calves ( also have hemifacial spasms, they don’t hurt until after they stop. Then it feels like being kicked in the face by a horse)
    -Joint pain – That’s the wonderful knife being stabbed in to each joint
    -Bone pain – feels like my bones are being crushed (the pressure builds and builds)
    -Freezing – my feet start freezing which makes them burn and spasm
    -Nerve pain – I can feel each nerve coming out of my spine as they turn to fire (those days I can’t be touched or touch anything because of the pain levels)
    -Feet pain – besides my feet burning, every step I take is like walking on broken feet

    Now the reason I need help and ideas:

    -Temp change cause pain
    cold causes spams
    heat causes burning
    -Now I have a drug sensitivity
    Can’t take anything with the word anti attached to it. It either makes my pain and burning 100x worse or it puts my in anaphylactic shock.
    -Drugs I can take
    Muscle relaxers (I’m on as much Baclofen and Flexarel as they will give me) everything else will knocks me out
    Narcotics – Butrans patch 10mcg on bad weeks, 15mcg on hard weeks, 20mcg on tough weeks
    And I do use marijuana (I live in Georgia and it isn’t legal yet)
    -My Doctors don’t want to put in a pump for either Baclofen or Morphine. They don’t think it will do me any good. I don’t want to be in a drug coma the rest of my life.
    -Trigger point injection, dry needling, nerve blocks, epidurals, acupuncture, chiropractics, massage, have all been tried and nothing lasts for more than 10-15 minutes.

    I do meditate when things get really bad. But for the most part I just keep my mind focused on my work and kids. That helps on the bad and hard days. Nothing works on the tough days.

    If anyone has any Ideas or even doctors I can go see PLEASE HELP. I know I’ve only been at this for a year, but the pain grows worse by the week.
    Thank you,

  35. Brain, the only thing that helped me was the realization that any activity increases my pain. It took several months after being off work before the windup pain stopped. Now, I focus on not working and the pain is not as severe, and it can be tolerated.

  36. Please help me, I have CPS and I have it in both my legs but not on my feet, I have a severe case that has been going on for almost 14 years. In WA State, with pain medications it is a (one size fit’s all) meaning no doctor can prescribe more than 120mgs of any kind of pain medication. I was on the pain scale of 4 to 6 before my doctor retired at 345mgs of pain medication a day, which comparing to now, was awesome because as anyone with CPS knows that movement makes your pain flare up even more, but at least I could craft, visit my grandchildren and children as long as my legs where elevated. Today I am at if I even it out, on the pain scale about 8 which when I walk to use the bathroom, 7 level steps, my pain jumps to a 9 and takes about 1 hour to subside to a 7. I can’t go on much longer. I have been to so many doctors who tell me that I need to drop all my pain medication and start walking, swimming and to live life again. As all you suffers know, if it doesn’t show up on an x-ray, MRI, cat scan or bone scan, then you are making it up. Why would anyone what to give up on life for 14 years and stay in bed, NOT ME! I want to have at least a 5 on the pain scale and I would be thrilled. Does anyone know of a good doctor in Northeastern Washington????????? PLease HELP, I can not take it much longer!!!!!

  37. Hi Sweetgrass225, Hang in there!.

    I too have CPS in both of my legs as well as Myofacial Muscle Syndrome which is the precursor to Fibromyalgia. So I understand your pain. I have been able to level out from the high 9’s and 10’s, on the pain scale but it was not easy. I still peak at 8. There are a couple of things I did different. I changed my diet dramatically and reduced the foods that are considered inflammatory. You can find a listing of anti-inflammatory foods on the internet. Yes, moving does help, but you will need to go slow and work through it not just daily but hourly. For example, if you are hurting and swollen in the morning then lay down and elevate your legs for a bit until the feel better and pain has subsided. Then get up and walk up and down a hall way in your house. I use a cane and the wall to help. I have also been told by my doctors who finally get it, that being in constant pain can also cause some central nervous issues and therefore they prescribe me the lowest possible dose of an anti-depressant. I only take 1/2 of that. It does help. It is not because of any depression these drugs are also used to suppress the central nervous system from over processing pain. Also, full disclosure here: I am NOT a doctor or nurse or clinician, so PLEASE consult your doctors first!! I live in Colorado. I also found that temperature, and Humidity also can cause an increase in pain. When I experience a 9 or 10 I will go into a very hot shower and sit on a shower stool and let the water pound on my legs, sometimes using the massage feature, then my legs feel relaxed and almost numb. After the shower I will again sit in my lounge chair and elevate my legs for just a short period (15-20 minutes), then get up again. This usually gives me temporary relief for about 2 hours, which gives me time to get my pain medication taken before the effects of the shower wear off. By the way, you might want to keep up the crafting as well, I found that practicing diversion tactics with my central nervous system helps to level out the pain. I distract my brain from thinking of the pain, sometimes it works and sometimes it doesn’t. So hang in there ok!

  38. thank you for your kind advice, my legs do not swell but feel like infected teeth from a chronic toothace. I do try to distract myself, like being on the computer, playing free slots because I don’t have to think hard as the throbbing is about the only thing I here when my pain flares up. I am going to the only doctor years ago who said I have Central Pain Syndrome with one cure in sight. I was in denial for many years, I wanted it to be something that a adjustment, shot or something easy might work to make me back to normal, it is just recently I have accepted it, BUT NOT WELCOME IT

  39. I just noticed how back I spelled or said things what I meant to say that I see the doctor who diagnoised me many years back on July 21, I hope he has more ideas for treating me and I meant to when I saw him he told me there where no cures. When I feel this way, I can’t think straight. sorry?

  40. No problem, I have the same problems with my thinking as well. I like to say it was just a brain fart so that at least I can laugh even though
    I know it is not funny. I hope your doctor will listen to some of your suggestions. I also forgot, my doctor told me that I might want to try
    water walking. I have gone swimming, but can only handle about 20 – 30 minutes before the fatigue sets in. Just another thought.
    I will pray for you,

  41. Hi all, it looks like it’s been a while since anyone has posted here, so I am hoping someone will see this and answer me.

    How long did it take you to get diagnosed and what kind of doctor diagnosed you?

  42. Once I found the right neurologist, he diagnosed me in a couple hours. He got my medical history and did muscle and nerve tests. Mine was a little different because mine was from a head injury. As long as you can find a doctor that undersands CPS.

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