Information for Medical Providers

Central Pain Syndrome (CPS)

(AKA- Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Post Stroke Syndrome, Central Sensitization)

WHAT IS CPS? (CPSF Official Definition)

  • Central pain syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types at once: burning, freezing, shocking, aching, crushing, tearing, and spasticity.
  • It has been characterized as the worst pain known to man.
  • It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to, stroke, MS, epilepsy, head & spinal cord injuries, aneurysms, tumors and infections.
  • It is estimated that millions of people in the U.S. suffer from CPS.
  • It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult.
  • The medications and treatments used to fight it are very limited and highly ineffective.
  • There is presently no cure.

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Central Pain Syndrome (CPS) is known by many names, including thalamic pain syndrome, post-stroke syndrome, Dejerine-Roussy syndrome and Central Sensitization. CPS is not an ailment that develops in and of itself. Instead, it requires a precursory condition that first injures the Central Nervous System (CNS). This includes the brain, brain stem and spinal cord. Once thought an uncommon neurological curiosity, CPS is now said to be an important and underrecognized condition.

Central type pain has been documented since the early 1800’s. In 1891 it was formally described in a published paper by Dr. Edinger, a physician working in Frankfurt am Main Germany. After a stroke patient of his committed suicide from this pain, he hypothesized that central pain could be released independently of  peripheral nociceptive stimulation. In 1906 Dejerine and Roussy described the so called “thalamic syndrome” that was said to be caused by and associated with a variety of thalamic infarctions and hemorrhages. Now, over 100 years later, CPS has been given numerous other titles and is known to be caused by CNS damage of varying types.

A lesion somewhere along the spinothalamic tract is the direct cause of CPS, but the cause of the lesion can come from many differing sources. In major infarcts and hemorrhages, such as strokes, and other medical conditions where damage is detectable, a diagnosis of CPS is sometimes easily obtained. However, lesions as small as the size of a pinprick, occurring anywhere along the spinothalamic tract can cause the very same excruciating pain as the larger, more easily detectable lesions. The smaller lesions are often entirely unseen via today’s scanning procedures. Therefore, many CPS sufferers are treated with inadequate medical care, due to a lack of clinical findings.

Some practitioners feel that patients are drug seeking or have emotional/mental issues that are the underlying cause of their pain. We hope to provide clinicians with the necessary knowledge to treat all CPS sufferers properly and in a timely manner. It is imperative to do so, since a delay in treatment can actually lead to worsening CPS pain.

Once the central nervous system is damaged, it can take days, weeks, months or even years for CPS to appear.

WHAT ARE SOME OF THE CAUSES OF CPS?

Some common causes are stroke, spinal cord or traumatic brain injury, cancer, Parkinson’s disease, multiple sclerosis and Epilepsy. Less common causes of CPS are:

  • AIDS, especially end-stage
  • Aneurysm
  • Arachnoiditis
  • Arteriovenous malformation
  • Cauda equina syndrome
  • Cervical myelopathy
  • Charcot Marie Tooth
  • Chemical toxicity
  • Cluster headaches (some think this might be a form of central pain)
  • Gunshot wounds
  • Infection (bacterial or viral; such as Shingles and encephalitis)
  • Lead neuropathy
  • Meralgia paresthetica
  • Mercury toxicity
  • Myelomalacia
  • Neurofibromatosis
  • Posterior myelitis
  • Post-polio syndrome
  • Prion disorders
  • Radiation exposure
  • Reflex sympathetic dystrophy syndrome
  • Spinal cord infarction
  • Surgical accidents
  • Syringomyelia
  • Tethered cord syndrome
  • Transverse myelitis
  • Vascular malformation
  • Vitamin B-12 deficiency
  • Any condition that causes nerve demyelination or other nerve or brain damage 

WHAT ARE THE SYMPTOMS OF CPS?

CPS patients deal with PERSISTENT pain. It is characterized by a mix of pain sensations, the most common of which is constant burning, which may be unrelenting and occur over large areas of the body. CPS may also include other pain sensations such as freezing, aching, ballooning, stretching, crushing, spasticity, shocking/electrical type jolts & stabbing.

Depending on the location & amount of CNS damage, the pain can occur anywhere from head to toe or just in certain areas. It can be totally one sided or may cover the entire body. Often, as CPS progresses, it transforms, covering new areas and varying in pain intensity and character.

Other CPS symptoms include intolerance to temperature change, fatigue, a vague numb sensation (like coming out of dental anesthesia), hyperalgesia (abnormally excessive sensitivity to pain), allodynia (pain elicited by stimuli that normally doesn’t cause pain), allachesthesia ( a touch in one area resulting in pain in a neighboring area), visceral pain, bowel and bladder pain and emotional lability.

CPS becomes worse with normal sensory input, such as light, sound, movement, vibrations, emotions, stress and even thinking. A light touch or hug, a breeze, sunshine or even clothing touching the skin may cause intense, burning pain. Touching an item that is hot or cold, such as a door handle, coffee mug, water faucet or steering wheel, can cause pain not only to the hand that touches it, but in a range of different areas in the body. The pain makes no sense. Barometric pressure changes, such as storms rolling in or out, and altitude can wreak havoc on a CPS sufferer. Preparing for and getting to a doctor’s appointment can be a major challenge with CPS.  Showering, dressing, walking outside into the daylight, sitting on a hot or cold car seat, touching the warm or cool steering wheel and riding in a car that vibrates down the road can add to the pain a CPS patient feels.

For many with CPS, the most symptom free time of day is just after waking up, before the senses are bombarded with the input of normal everyday life. The sleep cycle can, in some, calm the pain and many CPS sufferers will attest to having their best hour(s) of the day shortly after waking. But, once sensory stimuli starts ( i.e. moving, getting dressed, walking to the bathroom, seeing daylight, talking, eating etc.) the pain begins to ramp up. Things that used to be easily accomplished are often avoided because of the extreme pain they evoke. Isolation and disability can occur due to the enormous amount of discomfort that normal ADL’s (activities of daily living) cause. CPS sufferers may have a lack of patience from tolerating constant neurological pain as well as emotional lability.

HOW INJURY OR DISEASE AFFECTS THE SPINOTHALAMIC TRACT IN CPS

Central pain is by definition “bizarre” and is the result of a diseased pain pathway. Research reports the most severe central pain is found only in those with some remaining function, however miniscule, of the spinothalamic tract. Loss of motor function does not correlate with degree of central pain. In general, the most severe central pain can be expected where significant retention of spinothalamic tract is present. Such pain typically appears when the CNS injury is resolving and is revealed to be incomplete. In a healthy spinothalamic tract, radiostimulation causes no sensation. In patients with CPS it recreates the sensations of central pain and acts as if the entire pain system is like a nerve ending. When these ungated pain signals reach the cortex, they may cause unbearable suffering.

INJURED MOTOR NERVES VS. INJURED PAIN NERVES

An injured motor nerve simply carries less current than an uninjured motor nerve. Injured pain nerves, however, do exactly the opposite, increasing their signal. But, it is not just a simple increase. They eventually gain power to influence uninjured neighbor neurons, which begin to autonomously fire. (Devor’s work in The Axon, ed. Waxman, Oxford Univ. Press, 1995).

The process can become so violent that the thalamus, the pain center of the brain, records “bursts” of impulses from these injured nerves. CPS apparently occurs at this point. 

The longer that pain pathways relay pain messages, the more efficient those pathways become, causing greater pain to be transmitted, the way a stream carves a path through land, so that over time, it flows more quickly and turns into a river…..progressively deeper levels of pain cells in the spinal cord are activated with prolonged injury. Also it may be that descending pathways from higher brain centres which normally dampen ascending pain (as during the placebo effect) are weakened.

“Physical pain changes the body in the same way that emotional loss watermarks the soul. The body’s pain system is not hardwired, but soft-wired (what neuroscientists call ‘plastic’), and it can be maladaptively molded by pain to increase its pain sensitivity……But in the case of persistent pain, neuroplasticity is negative. The nerves in the spinal cord become hyperexcitable and begin spontaneously firing and recruiting other nerves in their service, and the whole system revs up to be increasingly responsive to pain, in a phenomenon discovered by the pain researcher Clifford Woolf and termed…..central sensitization (when hypersensitivity occurs within the central nervous system). ” from ‘The Pain Chronicles’ by Melanie Therstrom

FINDING THE RIGHT MEDICAL CARE

It can be extremely difficult, time consuming and exhausting to find a doctor who is familiar with CPS. One of our main goals at CPSF is to educate the medical community about the causes of this menacing condition and how to effectively diagnose and treat patients who have it.

Because this type of pain can worsen with time, it is IMPERATIVE to diagnose and begin treatment of CPS as quickly as possible, before deeper damage is incurred. Although there is currently no cure for CPS, certain medications and treatments have been found to be more effective than others.

TREATMENTS AND MEDICATIONS

There are many medications used in the treatment of CPS, although none are completely effective in alleviating the symptoms. Through trial and error, patients and their doctors eventually find the medication(s) that work best for each specific case. It is essential to find the regime that allows for maximum quality of life for each patient. The most common medications for CPS are listed here:

Anticonvulsants, antidepressants, antispasmodics/anticholinergics, benzodiazipines, CNS stimulants, local anesthetics (transdermal cream and patches), medical marijuana (inhaled, ingested or topically applied), muscle relaxants, narcotic pain medications, neuroleptics and sedatives/sleep aids.

Medications will vary based on the precursory condition that led to CPS and any other medical issues a patient may be receiving treatment for.

Since chronic pain can worsen with vitamin D deficiency, ensure that vitamin D levels are within normal limits. Fatigue and depression, which are common in CPS may also be improved by adding a vitamin D supplement if needed.

Aside from medications, there are currently no treatments known to alleviate CPS symptoms. However, stress reduction, biofeedback and avoiding certain triggers help some patients keep their pain at more tolerable levels.

WHAT IS THE PROGNOSIS? 

In past references, CPS is listed as a non-fatal condition. But, as pain spikes to unthinkable levels, so can blood pressure. In certain patients, such as those prone to stroke, an increase in blood pressure can deliver fatal consequences. Also, there is a high incidence of suicide in the CPS community because this insidious pain NEVER goes away, often gets worse over time and is incredibly difficult to effectively treat.

* THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE. PLEASE CONSULT YOUR DOCTOR OR A LICENSED MEDICAL PRACTITIONER  FOR INFORMATION, TREATMENT OPTIONS AND/OR DIAGNOSIS OF CENTRAL PAIN SYNDROME*  (See Legal Notice)

120 thoughts on “Information for Medical Providers”

    1. Thanks Darryl. I’m very glad that you found the article informative. We hope to share more important CPS information in the coming months, especially when our new Website launches in 2013. TAKE CARE.

  1. Hi. Really good article. Thanks. I’m printing it out to take in to my GP. One thing, though. I sent the link to my brother, a professor of neurophysiology, and after agreeing how good it is, he made the following comment:

    “How the CNS pain pathways become hyperactivated is still a mystery, but I doubt the following statement is correct…
    ‘After sufficient bombardment threatens neuron death in the thalamus, it shuts down. CPS apparently occurs at this point.’
    Nerve cells don`t shut down just because they discharge alot…more likely the pain paths stay turned on because the electrical and/or chemical properties of the pathway neurons are altered over the long term to facilitate firing. Also it may be that descending pathways from higher brain centres which normally dampen ascending pain (as during the placebo effect) are weakened.”

    I don’t know anything about this stuff myself, but there it is, for what it’s worth.

    Thanks again.

    1. I am very glad that you liked the article. I am also thrilled to see what your brother/professor of neurophysiology has to share in regards to CPS and its effects on the brain. While researching CPS for this article, finding quality information was very difficult. I am GRATEFUL for the education he has offered here and will re-assess and correct the article accordingly.
      I thank you both for your compliments and wish you less pain and more quality of life in 2013. TAKE CARE AND THANKS AGAIN.

      1. ive lived with thalamic pain syndrome dejuerne rossie now for 15 yrs nobody docters neurologisti always manage to get thrown out on my rear for smoking pot it helps with the burning sensations as you may rubb against a wall or any thing my head hurts 24 7 tryed every med possible oxicotin loritab 8 times aday at 10mgs pretty much ran the gamit with narcotics im only 54 trying to look forward to g babys dont ever let your dr tell you that its all in your head see a neurologist if he dont know tell him to look it up i found that these symtoms could take as long as 6 months to rear its ugly head.if you ve had a stroke in the past six to 8 months keep a good study on any pain out of the ordinary please see a doc as soon as possible this disease is no joke i went to my family doctor he has never heard of either one of these diseases tell him to read up welll still hurtin in lou ky.

    1. Yes I have personally witeessnd Mr. Healy’s troubles with these Montgomery County Officials. And they are NO BETTER than High School Bullies in the way honest citezens are treated in this Commonwealth court system.My Own personal battle has been ongoing for almost (6) years (4) Superior Court Appeals,(2) Supreme Court Appeals, and Now a Federal Lawsuit for Civil Rights Violations by these Officials.Montgomery Pa. Court Of Common Pleas Case # 2007-00380Former Montgomery County Judge Sharron L. Rex v. John W. Kulesa Jr.A (5) MONTH MARRIAGE, Now Almost (6) Years in litigation.

    2. Louise, I am not familiar with the abreviation of CPS. Please explain what it stands for as I may be more familiar with other terms that it may be. Then, I will explain further. I will share with you that along with very severe RA, I have moderate Lupus (3 forms which include SLE, Discoid and CNS or Central Nervous System Lupus) The CNS Lupus does affect my brain that was proven by an MRI of the brain. I have white spots (plague) on the area of my brain that serves my communication and memory. My memory is quite poor, especially the short-term, but I do have some long-term memory issues, as well. It’s terribly frustrating to me as one of my major skills have been that of an orator. Interestingly enough, when I am writing, I have very few problems communicating. It’s my oral skills that have taken a nose-dive. I am treated with Aricept which is the first and primary treatment for Alzheimers, yet the truth is that those of us with CNS Lupus do not have any more chance of developing Alzheimers or Dementia that the average public. Thank God for that! I now need to return to the Neurologist because I’ve been on the same dosage for about 4 years now and it’s time to increase the dosage as the disease has advanced, causing me more and more communication difficulties, yet when I first began taking Aricept, I saw an approx. 60-70% an improvement. I’ve certainly deteriorated since that time.Please offer me more information and I will then respond to your question and if need be, I will do research on it and then respond to you. Thanks so much for your question. It’s an excellent one! God Bless You! God Bless Us All!

    3. QuotesChimp now know what an insurance contract is and what parts it is made of. But when does the insurance contract actually begin? In other words, when is the company on the hook if a loss occurs�until you’ve paid a premium, or as soon as you sign on the dotted line? The answer to this question can be very important if a loss covered by the policy occurs after you have requested to be covered but before the policy has been formally issued. Let’s call this time period the gray area.

    4. Hi Teresa,

      Be very careful with Gabapentin,some of the side effects can be horrendous. I was on 4,800 mg and I gave it away for Methadone which is a far better pain reliever. The made my Gabapentin made my weight go through the roof & I had continual Diarrhea. I went onto the Methadone the Diarrhea ceased and my weight went down by 42kg.
      So I would warn anyone to be very careful while taking Gabapentin.

  2. best article ive read so far good work. is there any holistic approaches to research? mainly a change in diet like dr. Gersons treatments or similar.

    1. get a lawyer, dont say aniyhtng silly or stupid, just let your ex dig himself a hole, dont let him go out of the country with your child, keep all of you billing statements (just in case) and get a friend or family member you can talk to for support.

    2. Hi Radene, Absolutely true! DepoMedrol is extremely doerngaus. 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.

  3. I would like to see Nerve Trauma listed as reason for this syndrome. I’m a walking, living, breathing human with this curse and it started first with a neurosurgery and then a freak accident where I fell hitting my head and neck (neck is where I had the surgery). Now I live with this 24/7 and it’s a nightmare.

    1. I too have CPS. I was accidentally hit in the back of my head with a tray of food in a restaurant almost 4 years ago. The waitress damaged my occipital nerve and by later that night the pain had spread to the front of my head. Four days later, my entire body had continuous amplified stabbing pains. No pain on this earth can be compared to it. All of the doctors could not find the nerve damage. During that time I could not have any pain pills around me because I could not resist taking an overdose, I flushed them. I knew I could not overdose on marijuana and thank God I used it. It saved my life. I went six months before getting a nerve block at the occipital nerve but it did nothing for the rest of my body. Now they know marijuana stops brain damage and it helps to increase your cognitive skills but most of these doctors are still unaware of this. The neuropsychologist say I do not have a brain injury because of my test results. My Orthopaedic doctor just removed a heterotopic ossification on my foot which could not have occurred without a brain injury. Most of the certified brain doctors really don’t understand brain injury or nerve injury. How can you have occipital nerve damage from blunt trauma and it not affect your brain? If it was not for the ossification I would have no proof of any injury or any concrete evidence in my lawsuit. I was an engineer who had to research to do my job and I would be lost if I had not been researching my own condition. God has been my help and as long as I do not engage in a lot of movement the pain is tolerable but marijuana has been the best pain reliever. I still have not been able to get the right diagnosis but maybe now my doctors will take me serious when they get my medical records from the surgery which removed the bone growth which only occurs with severe brain injury. It’s a no brainer for me because the body runs off of electricity. Mixed signals from the brain can produce bone to grow where it should not and it can certainly send pain signals where it should not. I said all of this to let you know that marijuana will help you. It is natural and pharmaceutical companies have paid millions to conceal its true benefits. It really is a miracle herb.

      1. Hi Rita my friend’s mom had a stroke that left her suffering from CPS. There are so many forms and concentrations of cannabis that it could be an expensive proposition to test all of the possibilities for maximum pain relief. Do you have an suggestions for the most effective pain relief in your case?, ie; smoking, edibles, oils, tinctures under the tongue, vaporizing, etc also what seems to work the best? , Indica dominant strains which has a higher CBD/THC ratio or Sativa a higher THCCBD ratio.

        We are going to try a 1 cc dropper of fluid under the tongue that has 10 mg of CBD with 5mg of THC as the purest’s claim that you need some THC, as it along with other cannainoids have a synergestc effect offering better pain relief than CBD with little or no THC. What is your experience with the type and concentrations of cannabis that yields the most effective pain relief? thanks scott

      2. I have not researched all the information concerning marijuana. What works best is keeping all physical activities to a minimum. The wrong healing path creates a short circuit in your system somewhat like a machine. As long as it’s not plugged in and activated to do work everything is ok. It is when you try to produce any type of work then the sparks starts to flying and creates physical pain. The key is, being still controls the pain. This drastically changes your life but at least you are not in constant pain.

  4. I am getting a ketamine infusion in Sept (2013) for my CP. My pain doctor says he’s had good results with it. Will let everyone know how it goes. Never give up hope.

    1. Hi Mark, My husband has suffered this pain since his stroke two years ago. We have an appointment to get a ketamine injection in 3 weeks. How did you do with it?

      Best,
      Lisa

  5. Mark, I am eager to hear of your response to the Ketamine infusion, please let me (us) know when you are sure of your reaction to it, My hopes for your favorable results are in my prayers.
    Jeff Guy Duclos

  6. I’m a sufferer of this insidious problem and I reiterate the thanks for such a well written article. I suppose 99.9% of people wouldn’t realise just how hard it is to describe the pain that we suffer with. There are so many different types that I get lost trying to think of them & then the pain intensifies with the thought process going crazy during this time. I notice the mention of Gabapentin as a pain reliever, and that is a fair statement if you have your CPS by way of a brain injury or a Stroke where the Thalamus has been damaged. However, if you have your CPS through an injury to the CNS in the spinal column then there is no known medication that will give you much relief at all. Over the years I’ve tried everything, all the opium based drugs in all size doses from very low to very high. The last one I was told to try by a Neurologist I have stuck with, and that is Methadone by the trade name Physeptone. it does not rid me of pain but it does even out the spikes which is far better than just going with the flow.
    As others have stated I too will be printing this out to take to my doctors, because it says everything i wish to say to them and I wont get flabbergasted trying to tell the story. Thanks again. Geoff

  7. I’ve had this since the birth of my daughter 26 tears ago in which, I apparently had a stroke. I had another with the birth of my last child also and the pain went full body and is now unbearable. I had the hole in my heart patched so the threat of stroke is gone but, I’ve been to hundreds of doctors and natural practitioners and nobody ever brought this up as a possibility to me. I had to get my own education, becoming a wellness coach, nutritionist, and personal trainer as well as become well read on pain management before I found this myself in my studies.

    Now, the damage to my CNS is too severe to get on top of. I’m 47 now and am in so much pain, it it truly unbelievable.
    I’m angry that the medical world would never take me serious. They would look at a fit, active, positive person and assume I wasn’t in THAT much pain. It’s all been very frustrating. Now, here I am too far gone to get on top of the pain and told that I will be made “comfortable” for the rest of my life.
    I totally understand why people end their lives with this problem but I have too much to live for. I would endure all the pain in the world to be with my kids. I also find it hard to believe that we won’t find a cure whether through our own quest to feel better or through the eastern or western medical world.

    I’m beginning to take a slow release Tramadol and get off of the Norco.
    Wish me luck

  8. My husband suffers from CPS since his Wallenberg stroke 1 1/2 years ago. He was 43 at the time of his stroke. This article is perhaps the best I’ve found to try to explain to others what he suffers with daily. Thank you for your thoroughness on this debilitating syndrom.

    1. Tramadol works for me…cerebellar and medullar stroke, (*Wallenberg) left side. Stokes in the right hemisphere are supposedly mire painful

  9. WOW, your report is extremely interesting! I truly like reading your this short article.
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    Lupus , Lupus and Pregnancy , etc, may very well be
    greater and more full. Thank you

  10. Thank you for the article. I forwarded it to my physician. Both my family practice Doctor and my neurologist have other CPS patients besides myself but I know they are no thoroughly knowledgeable about it. I don’t believe they understand (how could they really) how much pain and suffering goes with this disease and how to best treat it.

  11. My CPS was caused by a concussion a year and a half ago. I was just diagnosd a week ago today. Countless doctors couldn’t tell me what was going on and no one understood what I was going thru. I own a restaurant in Atlanta and I work 50-60 hours a week. I have found that the more I keep moving the better I feel at that time. There is a price to pay later, but at that moment in time I’m not thinking of my pain and I feel “NORMAL” for that short period. As soon as the movement stops the pain comes back. It is worth every second I get that is pain free.

    Like everyone has said “THANK YOU FOR THIS ARTICLE”. It has helped my family understand what I go thru on a daily basis. It has givin us the words that we couldn’t find ourselfs. And gives the people that care about us the understanding that we want them to have. Again THANK YOU. It has meant a lot to me and my family…

  12. Thank you very much for this information–it is very helpful. I too was very recently diagnosed with CPS, which actually started 6 years ago. My CPS started 6 months after brain surgery for epilepsy and a brain tumor. I have tried absolutely everything, without any relief. It is a 24/7 struggle. I plan on having a deep brain stimulator implant later this summer, hoping it will help. I wonder if anyone else has tried this.

    In any case, thanks again. I also hope doctors become more familiar with this hellish condition. It would be good also if neurosurgeons would more willing recognize this unfortunate effect of surgery.

  13. Thank you for this article. I believe this May be helpful to my Doctors. I have suffered back, shoulder, and neck pain since my early teens. I now have been diagnosed with fibromyalgia, multiple sclerosis, rheumatoid arthritis, and now, peripheral neuropathy. I have numerous medications, and have chosen to stop all narcotic medications because it is so difficult to find a Doctor who will take you, and when you do, they don’t want to give you prescriptions unless you come in every 3 weeks. This became too expensive for me. So I just weaned myself off the pain patches I was on, with a doctor’s “help”. I am trying one more doctor that is over an hour away from me, and if this one turns out the same way, I’m done with pain management doctors. It has not been a pleasant experience, to say the least!

  14. Arteriovenous Malformations, AVMs & Vascular Malformations DO CAUSE hemorrhagic strokes. The above claim/info is misleading to physicians & to patients suffering from CPS secondary to AVMs & Vascular Malformations (such as cavernous malformations, CMs). Many of these patients unknowingly have CPS & depend upon internet info, so please revise this. Thank you.

    1. Hi Kitty Mom,
      Why should it be revised ? You have People that get CPS through your AVM’s & Vascular Malformation, so what. Everyone gets CPS through some other reason, mine is through Facioscapularhumeral Muscular Dystrophy. I fail to see what the problem is, we are discussing the effects of CPS and to some extent how to treat it or what we find helps us. Everyone, or I should say most, know what caused it.
      Stroke is the biggest offender but it is not the only one and your AVM’S etc is just another cause.

    1. So right Kc, especially surgical resections of deep, complex AVMs or cavernous malformations (vascular malformations).

  15. I have a veinous malformation in my thalamus that hemmorraged 20 yrs ago, Im printing this info out since my doctors think my pain is all in my head!

  16. Your a funny girl Vicki Murray.
    I forgot about my pain for a minute after finding someone here with a sense of humour!
    I don’t suppose there is too many of us, but, I could be wrong!

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  18. I was diagnosed with CPS just 6 months ago, after 20 years of suffering pain in my stomach, both sides after a small operation. Freezing and steroid injections have been tried all with some degree of success for a short period of time. The pain now travels all the way down my leg on the one side. I now also have neuralgic pain in my ears and all over my face, which makes it difficult to hug anyone as i am so sensitive. I cant travel distances anymore unless i want the pain ramped up for a week, because i cant take the vibration in the car. After spraining my ankle a few times the pain is also pretty much constant there as well. The only reason i can see for the onset of CPS is a compressed fracture of my spine, 3 vertabrae mashed, and also a major concussion That was 35 years ago. At the moment i am on carbamazapine, pregabalin, painkillers and antidepressants. Sometimes the pain is worse than others, particularly in cold windy weather around my face.I am trying a deep realaxation tape given by a yoga teacher which is really good, helps me take less painkillers and also at times if when i get stressed. I can also get lost in a good book, definitely takes my mind off the pain as does keeping busy. I have to have a positive mental attitude, with the pain top, bottom and middle, otherwise i would go nuts. My husband tells me i am really special!!

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  20. The research I have found calls our condition Excitotoxicity. It starts out with a nerve injury and then becomes Excitotoxicity which is the toxic effect of excessive neuronal activation. This is a complicated process which is caused by chemical and hormonal imbalances. In my case it would be called an Excitotoxicity Mediated Brain Injury which started in the cerebellum. This damage can occur in the brain or the spinal cord. There are several chemicals which are activated which starts this series of events. Stage1. A pain signal is generated in the body and sent to the spinal cord. Stage 2.The signal is increased and sent to the pain processing center in the brain, the thalamus. Stage 3. The signal is sent from the thalamus to the cortex at which point you feel the pain. Our problems develop at Stage 2 with a chemical called Glutamate. Glutamate is a pain transmitter which helps to trigger a cascade of events which seriously increases your pain. If there is enough Glutamate at stage 2. it causes the release of (N-Methyl D- Aspartate). NMDA is a powerful protein that ratchets the pain signal up to a new level. Once NMDA is released it makes it possible for the activation of the chemical called the master control switch of nerve injury pain MAPK (Mitogen-Activated Protein Kinase). MAPK causes more and more pain-generating chemicals such as glutamate to be produced. At the same time it increases the sensitivity of pain receptors to those very chemicals. The result is glutamate causes nerve cells in the spine to be triggered with less input, which in turn requires less glutamate to activate the pain signal beginning a vicious cycle of less stimulation and more pain. Pain nerves begin to fire out of control. This process is known as level 2 neuron windup and can cause devastating pain. This info was in an article written by Ben Plumb called Glutamate A Pain Transmitter. I also found that an influx of calcium ions also triggers the over excitation of neural circuits. Apparently we have problems with our amino acids and possibly chemical imbalances which can be found by seeing an Endoctrinologist to have our systems checked out. Hopefully this info will help with understanding this disease. There is a website called GreenMedInfo.com which has a wealth of information on natural ways to decrease the pain of Excitotoxicity. I hope this info can help us to discover ways of improving our condition. May God bless you all.

  21. Diagnosed with CPS in 2007. Spinal cord injury was cause. Taken off Amitriptelene weeks after diagnosis. No further medication given to me. Progressively getting worse, yet still working full time on my feet. Now having major vascular pains, as I have an impinged vertabral artery with narrowed canal in cervical area. I am trying hard to live a normal life. No one understands how badly I hurt all day, everyday.
    Wondering if it is common to have decreased mental processing ( such as finding the right words or answers to questions asked of one) and a sort of dyslecsia upon reading. I invert numbers and add words when writting, that are not noticed by me but by others. My sight is also progressively getting worse. Diagnosed by Specialist in New Zealand after many many scans and much therapy. US Doctors refuse to agree with diagnosis. So I am left untreated in the US and lived very rural in mountains, living at 2300 ft. above sea level.
    Any information is extremely appreciated. Sincerely.
    Kathleen in Richwood, West Virginia

  22. Hi Kathleen,
    Your not alone, my symptoms are very much like yours. My spinal injury is at the other end of the spine, at L3 & L4, but luckily, I had a doctor that did believe what I was trying to tell him. We tried a lot of drugs to aid in pain relief and every one of them was a waste of time, because it has been documented that a CPS suffer with a spinal injury being the cause, so far, has no drug available to ease that type of pain. The person with a brain damage cause for CPS {Stroke or brain injury} are the people that do have drugs to ease their pain.

    My doctor had a friend who was a Rehab doctor and he was discussing my case with him, and he told us to try Methadone because it was an excellent pain reliever not just a substitute for Heroin. That was 8 years ago, I have been taking 40mg 3 times a day for 6 years. The first 2 years was trying to find a dose that would ease the pain. It still DOES NOT really ease it, but what it does is take out the peaks the savage hits of pain and makes it a little easier to live with it.

    There is a danger using it though, as I’ve just found out it has rotted my teeth under the gums. I’m now in the process of having them removed before they all break off at the gum line. That is how I found out what this drug will do to you, my dentist couldn’t believe how quickly my teeth have got this bad. I hope you do find some relief but I think it will take awhile. The best I can offer you is heat packs around your injury area and try exercising in a heated pool.

  23. Thank You I’ve been suffering from CPS since 1998 the first time I looked it up there was only 3 short articles on so knowing I’m not alone helps not wishing this on anyone Ive got worse the last few years thanks for new information /

  24. Has anyone tried using a hyperbaric chamber? I have been urging my brother to try it, but he is reluctant since none of his many doctors believe it could help. He has been suffering with Thalamic Pain syndrome from a stroke for 2 years. I was told that HBOT has been successful in treating TBI’s and PTSD and other pain related issues. I haven’t found anyone who has used it for CNS. Of course these are different conditions, but it was suggested to me that the oxygen would allow the neurotransmitters to make new connections and reduce the pain. I’d love to know of any studies or personal experiences others have had with the chamber.

    1. Hi, Tony from Wales in the UK. I have had a stroke six weeks ago and getting worse with my pain and feelings down my left side. Thalmic stroke, getting worse every day, reading so much on the internet, I thought this description was very good and covered a lot.

      To answer your question I only this week have read of a surgeon based in the uk who had similar problems and was undergoing hyperbaric chamber treatment. It was believed this would lead to some rebuilding of his damaged nerve ending in the Thalmus?

      I will also be exploring this myself as I am getting worse day by day and the pain, electricity through my body contact etc,stabbing feelings on contact with others is unbearable and all the negative publications must surely be due to have a positive one and I think chamber treatment MUST be explored further.

  25. My daughter was just diagnosed with cps this week. The doctor told us that her brain, or parts of it isn’t functioning as well as it should be and needs stimulating and that by doing so her pain will go away. Sounds like a cure to me.

  26. Thanks for the write up; CPS to me was the most agonizing, disturbing, unrelenting hopeless experience I could imagine,.. Isolating, expecting death and finding no help due to torn artery linings and silent-stroke for 4.5 years. Anyway… besides blood pressure medicince over time I found stuff that helped me before I got surgery on an offending artery. They might help someone else…

    Vodka & magnesium (involved in brain synapses) are mild” neuro-protectant and both anti-inflammatory, fish oil regenerates and protects brain tissue and is anti-inflammatory, mucuna puriens has L-dopa (the dopamine direct precurser) and a little bit of seratonin in it (anti-parkinsons and general neuro-transmitters) supposedly melatonin is neuro-protective but it makes you grouchy and lethargic… Nattokinaise eats fibrin but is anti-inflammatory and therefore neuroprotective (1/2 capsule doesn’t make you feel wierd) 30mg of ginkgo is enough for neuroprotection but not so much for overdoing the brain circulation aspect… 3-ibuprofen and half and asprin are better anti-inflammatories together and safer for carotid artery stenosis patients than any prescription on the market… Reservatrol (neuroprotective) on the market is mostly from japanese knotweed, expensive and too potent an added bloodthinner; red wine, pomegranates, concord grapes & elderberry extract (lil’ pricey) are good free-radical scavengers… Curcurmin is good for all that stuff but costs a fortune so.. There’s always foods with it; Curry and Tikka masala .

  27. I was 36 and suffered a hemorrhagic stroke 18 years ago, from and AVM on my right Thalamus. I was diagnosed with Thalamic Pain Syndrome, 3 months after my craniotomy. I had 7 months of PT, OT, and Aquatic Therapy 3 times a week. I still have not proprioception on my left side. Even though my sensation is minimal, the pain is severe. As others have described, stabbing, burning, hypersensitivity. I start every morning with meds. including Morphine. I then ride a stationary bike and run 4 miles on treadmill. It helps to get the blood flowing, but in know means does my pain lesson. I’ve tried and taken everything under the sun to get relief. I’m concerned with the long term side affects of anti-convulsant’s, anti-depressant’s, Opiates and Morphine. My PCP and Neurologist are both on board for me to try medical Marijuana. There’s no side effects and you can’t become addicted. The worst that can happen is I’ll fall sleep. I’ll post my experience.

  28. Hello all,

    Everyone’s experience with central pain is unique to the individual as I’ve learned… carotid dissection from trauma 2010- untreated till 2014 (at my requesti got imaging) aspirin didn’t help ward off more silent-stroke (put myself on itafter 3.5 years of medical ignorance (neck was broken as well (fed prozac in shock, zombie eyed 3-years, nuts with CNS neuropathy (instant dementia from those and silent-stroke (or headaches as the hospitals call them) anyway had a basal ganglia silent infart issue eventually before my imaging request and had multiple systems atrophy stuff happen (sweating terribly, heart rate dangers) I’m lucky I saved myself… Got carotid endarterectomy surgery (90% 4.5 years) anyway have vascular parkinsons symptoms now…. Wanted to suggest Now vitamins GABA w/b-6 for pain and mood as well, helps me a lot.. 1000 fu’s of nattokinaise is a better neuro-antiinflammatory that the normal stuff as well (blood thinner as well) If your nerves are centrally firing from damage consider levadopa (its ok for restless leg syndrome as well)

  29. Very informative for us that suffer from medical harm, Arachnoiditis…I was injured in 2005 from an Epidural/ depo-medrol injection, in which my spinal cord was punctured and steroid injected into it. I have so many symptoms happening to me at once, that it is so hard to keep control of. Makes me very angry with the crack down on opioids going on, when the medical community gave me this pain. Very frustrating for Arachnoiditis patients.

  30. Hi
    My name is Jonathan and I suffer from CPS, recently diagnosed in March after a spinal surgery in February of 2014. I started having major symptoms in November and my wife and I did not know what to do. We could not get an answer locally and kept being told it was Fibromyalgia. My mother having Fibro told me quickly that this was not at all like what she had. This completely took me like a storm and has not stopped since. I have been to 30-50 office visits since then and I still have found no doctors locally who know what they are dealing with. I was diagnosed at Mayo clinic in Minnesota, but was only told to taper off my hydrocodone and continue taking Gabapentin and Cymbalta, both of which I was taking and both of which were not working. I have found that gabapentin will help me sleep a bit without having massive seizure like muscle spasms and crying to my wife in pain which run frequent. I was also told not to use a cane to help me walk when needed because he did not feel it necessary? I am fighting a blind was here with my wife and 2 year old daughter. I am in a day treatment pain program with little to no results, and a continual focus on taking away my meds and increasing my activity levels which only increase my pain. I have lost my job, and our lives lay in wait for some kind of medical professional who will listen and not see me as someone who is either seeking narcotics or who is just crazy. If I get told one more time that this is hyperalgesia I am going to lose my mind. I complained of worse pain at 5mg/325 Hyrdrocodone and have since been upped to 10mg/325, but only because I was crying the day I showed up and because my wife begged him. I feel a bit better, however the fact that I do not have a doctor who is familiar with CPS greatly concerns me. I can go through a list of symptoms and complaints but for now my hands are cramping too bad to continue which is just what they do now. If anyone has any advice I would greatly appreciate it. I wish you all the best in your own personal battles with this monster that I have met with great regret. Trying to stay positive, but I dont think I can do that until i have a doctor that is willing to listen first and not make assumptions without even knowing my condition. I will be typing more in the weeks to come its just hard to type anymore.

  31. hello Jonathan, I to suffer from this condition as a result of a thalamic stroke. I agree with you regarding the doctors I have consulted which have no understanding of this condition (I had to diagnose this for myself) and was initially shocked at what I was faced with. What I find particularly difficult is the lack of understanding and assistance from my family (They think its all in my head and that I can work through it by just trying harder) with a sort of mind over matter concept which I find absurd. I to have tried everything, I believe, and I am currently using Lamictal which for me makes it possible to function without the devastating side effects. I should say regarding my family that my wife and son have been incredibly supportive. I did not want to make this all negative because I have managed to keep it together enough to continue with my work which is not a strain on my physical condition and I and have also concentrated on the things I can do with my right hand drawing an so on, however I cannot do things like my drumming that I worked for thirty years to develop along with gardening, Etc. but again on the positive side I am a veracious reader which has not been encumbered buy this affliction.On an aside if I hear one more time about ac-cue puncture I will feel compelled to punch that person in the face. I understand how you feel and was compelled to respond which to date I have not done. Best of luck to you. And hoping that some day they figure something out to deal with this. With the deepest sympathy, Kevin

    1. Thanks Kevin, I really appreciate the kind words. I am currently taking 5mg of Hydrocodone 6 times a day, Lamictal 300mg at night along with 600mg of Gabbapentin both for sleep. I also take Buspirone I think 5mg 3 times a day for anxiety, Hydroxizine as needed for anxiety and apparently for pain. Hydroxizine mostly gives a tranquilizer effect. I also take Magnesium 250mg in the morning for cramping but really does nothing. It all is really just a band aid in the end really. I do get good results from hydrocodone but my dosage does need spread out longer and a higher dosage. The biggest problem besides the pain is sleep. I am actually afraid of sleeping now. I have a metal plate in my neck from the spinal fusion and an artificial disc below that. I cant get comfortable because obviously you have to rest your head on a pillow, but my neck just throbs all night because it just wants to be straight as if I am in a neck brace. I wake in a sleep paralysis of sorts now, often sweating and breathing heavy in fear. Again I am just terrified from the pain it causes. Sometimes my arms go completely numb when I wake and cant use them for about 20-30min. Sorry I need to make this more positive as you said. I too enjoy reading more so now than ever, it really distracts me. I also watch movies ALL the time as well as video gaming again just as a distraction. It is DEFINITELY hard explain to people what this is like and they do give strange looks like i’m faking it. That or they continually ask me to do things I cannot do. I got asked twice this year to go on a canoe/camping trip and I couldn’t find the words. I haven’t been asked about ac-cue puncture, but I imagine I would feel the same way wanting to punch the person. Massages help, but that gets expensive and I hate leaving the house unless its an emergency. My wife is very supportive, but I often get upset with the extra work load that it has placed on her. Our 2 year old daughter is only getting older and I find it very hard to keep up. I am trying to go back to work after 7 months off. I just cannot see myself on disability at 32, I just don’t know how I will keep up. Doctors continually call this Fibromyalgia and I always have to repeat what its true nature is. One physician wrote a letter to my employer explaining my condition and he actually spelled Central Syndrome Pain or something to that nature. The Mayo clinic had an understanding of CPS but unfortunately most physicians just look at me with blank stares. I would like to have my pain medication increased as I am a large guy at 285lbs and have little side effects as most people do. Federal restrictions have rendered that impossible and especially when my Dr has no idea the pain I go through. He has said a million times “There is no magic wand Jonathan I don’t think that will do anything” and he just increases my Lamictal which only lets me sleep a few hours at best. I may go and see Dr Forest Tennant in West Covina, California as I have heard many people on here rave about his knowledge of CPS. I live in Illinois though so a plane ticket plus a visit to a Dr outside my insurance network will cost me an arm and a leg. I don’t know how much I would get out of one visit either. I too haven’t responded to any posts and was hesitant to even share my story, but I am trying to get more involved. I am not a fan of the current CPS website, hopefully the new site will be much better. I hope this wasn’t too negative, I understand trying to stay positive during all this. I wish you the best of luck and I hope maybe you can find another instrument to play instead of drums. I used to play guitar myself and I tried to pick it up again but my hands kill me trying to play even the slowest songs. I wish you the best of luck and hope you can find some peace in your life during this horrible journey we are all on.

  32. Virginia here. My CPS resulted from a severe horse-related injury in 2004. Horse I was riding/jumping stopped in front of fence and I shot forward and landed on top of my head. I shattered my C1, suffered internal decapitation, brain injury, Tethered Spinal Cord (surgery to have it released in 2007 and they learned I had/have arachnoiditis (too much scar tissue); Acquired Chiari Malformation (trauma caused cerebellum to droop into spinal canal). Later on diagnosed with PTSD, depression, post-concussion syndrome. I was told 30 days post-injury that my C1 (called a Jefferson Fracture) had healed “straight and fine.” Sent back to work horse-training, given PT and isometric neck exercises (!). I went from doc to doc, from UCLA to neurosurgeon on Long Island. After 8 years of wearing brace from waist to forehead, I found a neurosurgeon in Portland, OR, near my home, who stabilized my skull base and C1 with screws, wire and cadaver bone. But, the damage to my central nervous system will never heal, as you all know. I am blessed b/c my injury was so severe, some docs and all family are compassionate and supportive. But 6 different neurosurgeons told me my symptoms were “emotional.” Folks, visiting 8 NSGs and not one mentioning CPS; acupuncturist, physical therapists, various specialists, leads me to believe that MOST doctors & medical staff do not “get” or even know about Central Pain Syndrome! I am deeply touched reading how doctors are so badly treating you all. As severe as my injuries, your symptoms are the same as mine! We pretty much look okay and that’s the problem. One talk-therapist suggested I might have Multiple Sclerosis. I do not, but she was close to right!! CPS is the same pain and symptoms those with MS and Parkinsons endure! I have attempted in my own small way to educate many, many doctors and medical staff and I know that in some cases, some good was done. I can no longer work, I am deemed 100% permanently disabled by work comp medical examiners. I lost my life with horses and all facets of a very busy, active life which included writing, performing, traveling to perform, playing in bluegrass band. I have an occasional day when I can do a little light gardening for an hour or two; the rest of each day is spent in bed napping, online, or watching TV. I have been taking oxycodone, Nucynta (morphine), nortriptyline, Cymbalta, Metanx (Vit. B supplement). But, now, “reform” in CA work comp laws has taken me cold turkey off 2.5 of my meds. After 11 years as a model patient with no reports of misuse or abuse of meds. Faith in Jesus has been the Number One thing to keep me going!! Prayers for each of you. As you learn about CPS (I have much to learn!), you might visit http://www.painonline.com. Thank you, Central Pain Syndrome Foundation, for this website, article, and this venue for all of us to share our stories.

      1. thanks for sharing that, ANON! I thought my pain mgmt specialist told me that, so I have thought that for a few years now. It helps to know what is correct! thanks!!

      1. I agree… we all suffer from various levels of this awful condition and it could well be that what you say you are fully-recovered from was either not CPS, or a very low level of it (if there is such a thing). I do believe there are varying levels of suffering and debilitation between CPS patients. On the other hand, I do believe in the power of prayer and if the Lord has granted someone a healing miracle, give Him the Glory!!

  33. hello virginia, I’m so sorry for your pain. I also suffer from CPS. I am taking the medications you take.( oxycodone, tramadol ER, Gralise, Nortriptyline). They are beginning to be ineffective. My PMD wants me to take Methadone. Not because I’m a drug addict but because it is supposed to be very effective for CPS pain as it dulls the three different types of pain receptors in the central nervous system where none of the other medication deal with all three types. I’m wary of Methadone for several reasons but I am curious whether or not your PMD has suggested it for you? it may be worth asking him/her about so you can make an I formed decision.
    Xanthia

  34. Hi Cynthia, I didn’t see this until now. I am wary of Methadone only because of a very bad reaction to it that my husband had. They tried him on Neurontin (gabapentin) and Methadone and that combo rendered his brain almost useless. He had no memory, not even on how to get home. It was horrible living with him like that for several days, til I went behind his back, called his doctor and told him what was going on and he better be taken off those meds immediately. Since then, I’ve had an aversion to Methadone, tho I know several people who take it and do okay. Did you start on it, Cyn? It might be something for me to look into, since my husband does not have CPS, so his reactions probably have nothing in common with me. I would be interested in hearing from anyone who has had experience with it, to hear their stories, so I hope you and others will post!!

  35. no, haven’t tried it yet but am getting closer to giving in. my pain is breaking through continuously and I’ve built a tolerance to my current medications. I just don’t know how drug companies can’t offer medications that don’t cause dangerous side effects and prohibitive weight gain.

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  37. Hello,

    I thought I’d posted here before but I’m not seeing it so perhaps I am thinking of another message board. I have CPS after treatment for a bran tumor. I was off work for almost a year while recovering and 3 months after returning to work the CPS started. My pain is constant and so tiring, and stress is a trigger to cause it to flare up. No one really understands even when they try to. I suspect that if they really knew how much pain I live with on a daily basis they would be shocked.

    I am seeing a palliative care specialist who has me on gabapentin and methadone, I also have vicodin for use whenever I just want to knock myself out. I want to try finding a doctor in my area who actually specializes in CPS and I am wondering if I wasn’t working would I be in better shape?

  38. Hello Jonathan,

    Thanks for getting back to me. It is comforting to hear from people that are dealing with this (I sincerely wish you weren’t of course). Just wanted to fill you in on Dr. Tennant, as I have gone to him myself. Although it appears that he would know a lot about this condition I did not find this true with my experience. In fact I would strongly recommend against seeking his services (I found him somewhat of a quack). He actually injected me with a heavy dose of Oxycodone which we know is not effective for our condition. In fact I had a violent reaction. Having said that I am this weekend trying a therapeutic dose of Ketamine. If I have any positive reaction I will let you know immediately. Look up Dr. Terrance Early in Santa Barbara. You can go to his website. We have got to keep trying as some day I believe there will be a solution to this. If you ever wanted to speak to me which I would enjoy, here is my number or forward yours.

    Best,
    Kevin Clark
    818-606-4049

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