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.

     ————————————————————————————————————————————-

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)

Advertisements

120 thoughts on “Information for Medical Providers”

  1. I have CPS following a stroke 18 months ago. It is on the entire right side of my body. I have tried tons of meds (nothing worked) and acupuncture. Lately I have been using self hypnosis recordings for pain relief before I fall asleep at night. These have made a difference. The pain is not gone by any means, but a bit more tolerable. We all know just taking the edge off is the best we can hope for most days, and I am thankful. Good luck to everyone in their day to day struggle with this horrible condition.

      1. I’m currently reading about reducing high glutamine/glutamate foods. Apparently the glutamates, like the glutamates in MSG, increase the excitatory nerves, worsening pain and/or seizures. It seems as if there’s not a ton of info on this, but from preliminary searches, it seems that if you can lower your glutamine levels (and increase your natural GABA levels, that can calm the nervous system (in a similar way, perhaps, that anti-seizure meds like Gabapentin work, but without the side effects). Don’t quote me on this, but perhaps look into this. Here’s one website, that might lead you towards more information in this regard.http://www.myalgia.com/Pain_amplification/Overview.htm I have a spinal cord injury with resulting central neuropathic pain syndrome. Have I tried a lower glutamine diet for myself yet? No. I don’t want to make any major diet changes until I can talk to a dietician who specializes in this, but it’s worth looking into!

      2. Suzanne, please keep us updated on what you learn. I look forward to investigating the link you shared. I have just been talking with family about this aspect of CPS and how any level of emotion causes painful electrical flares up the back of my head which then lead my whole body to become painfully weak (more than usual), often for days or a week. What you described sounds common-sensible, so thx for sharing and don’t forget us if you learn more!

    1. OMG… I am going to die!! a massiveischemic stroke 7 years ago. took 4 months for pain to amp up and it has been off the charts ever since. life is over, everything I ever owned is gone. I was 55 in 2010, and jobs were moving offshore thanks to brilliant politicians. Three high end engineering jobs in 5 years, and laid off at the time fo the stroke, which led to not being eligible for SS disability. trust me, three lawyers, and two dedicate disability companies tried and failed. I have a letter from SS telling me to not bother applying anyone, as I will never qualify because after 50 years of working every day, I got laid off, took 2 years to find another job, got laid off 3 years later, over one year to get another, and in 2.5 years I helped them move my engineering designs to Mexico and went back to job hunting, had the stroke, can’t work lost my home of 28 years, lost everything else, landed in a ratty mobile home and tried to live on SSI. No one can live on SSI, and tried to have a life on $700 month. On my recent 62nd birthday, social security notified me that since I was eligible to take early SS retirement, a bad idea financially, I was disqualified from SSI, too wealthy on retirement 😦 not enough SS to keep paying lot rent and all else, lost the mobile home, landed in public housing where the put the illegal aliens who fall off the fence and give them disability for nothing, and public housing next door to me. zif I had been granted ss disability, my home would have been paid off in a year, and I would still own all I accumulated over the years. I own nothing, no family, no friend,a and pain that makes me suicidal anytime a low pressure front rolls in. there are not solutions for the pain, and doctors are running scared at prescribing opioids which provide me marginal relief, but 7 years of 24/7 pain at least a 10, on every square inch of my skin on the left side, sadness, depression, and no hope means my life is over, real soon now, I am sure pain can kill.

      I wish to know how to get help. pain clinic at the university of Utah only put me with a psychologist, whose “prescription” was ” go to youtube and find a relaxing video to listen to”

      I am having lidocaine infusions, to no good results. there is nowhere else to go, but if I cannot find, help, more important ‘hope’ i will die. is medical science without a heart? why should I fight to stay alive when no one can offer any help to get me to a place worth living in. too much pain means no walking. no walking means weight gain and atrophied muscles which is more pain. I can no longer walk or take care of myself. this is medicine in 2017?
      No one even hears me when I tell them that my balance system failed 6 years ago, which means no unstable beds, no sitting upright in a chair, thus 6 years of living prone on the floor, aka 10% of my life was spent sleeping and laying on the floor, inside, alone, nothing but streaming videos.

      gained 75 pounds since injury, had a massive heart attack 4 years ago. cannot find medical help. doctors don’t care, mostly because I need to be on mediciad, and medicaid does not pay enough for the doctor to spen time understanding why my life is over…

      Love? a relationship? a soft hand to hold? a kiss good night? not for 7 years….

      don’t want to die, but don’t want to live.
      those who suffer the torture I do have my respect and best wishes for a life of value. I have no such thing. 62 years old, public housing , 300 sq feet, full of cigarette stench. coffee stink all day and whatever the rest of the sad sacks cook, whenever that finds finds its way into my prison. , and nothing to show for my life of 62 years 😦 Avery angry man who thought someone with medical skills would have helped by now…. I am going to die in a welfare prison.. and we destroyed our health care system, thinking it was fixed by obamascare. the man never did one thing to create more qualified doctors.

  2. Great info! Very simple and easy. Nobody can explain as absorbing as this. I acknowledge your time and accomplishment on authoritative things simple and calmly understandable. I accept bookmarked your site. Thanks

  3. I have just realised that I have had increasing CPS for 25 years and a very large cavernous haemangioma was discovered in my brain then. I have had epilepsy, worse by 45.
    I put the aching, burning and pins and needles and now shooting pains down to epilepsy and injury and arthritic degeneration.
    I had a very traumatic time and pain at 20 and was never fit again, I could never sit or stand for long and was irritable and tired ruining marriages and friendships.
    Now at 70 I have to avoid all stimulus that also brings on seizures or headaches. No doctor has ever thought that I have this and I am seeing my neurologist again soon because no doctor has ever listened to me.
    My current new doctor I feel may be getting an understanding and is trying new meds that may help.
    I avoid people as any stimulus sets me off and I have to endure burning all over and lie down and stay still lying on my side as I can’t lie on my back anymore.
    Winter is awful and Summer starting sets me off but I get used to the increase in sunshine. EVERYTHING described above I experience.
    This is unbearable but is me, Since going off codeine I think I may be a bit better. Codeine caused an increase in pain after 10 years of it.
    I now have bouts of virtually almost no pain ie bearable and bouts of frightening unbearable uncontrollable pain. I have recently been given amitriptyline but I am unsure how to take it……………..lets hope my neurologist can help? I take Lamotrigine and clonozapam for epilepsy and extra clonozapam does help with bouts. Clonidine patches tried, I was severely allergic, diazepam tried to no effect at all. I don’t think amitriptyline helps except to put me to sleep.
    I worry that I am losing fitness as all stimulus is too much. Luckily I was always happy with my life and being alone, no wonder I preferred it.

    . No-one could understand except my daughter who works in the med school as Professor of Anatomy and has Fibromyalgia herself.
    Just writing this I am burning all over now.

    1. i had a hemorrhagic stroke in 1990 when i was 34 and have been left with paralysis down the right side of my body – still cant use my right arm or hand just slight movement in hand and arm and walk with a carbon fiber leg braise – i could cope with all that but the (CPSP “central post stroke pain” is very bad, and have tried all of the medication even opiods which only worked for a short time so now i am drug free!i’ve had 3 “deep brain stimulater operations 2 in oxford with professor tipu aziz and 1 in the london hospital without success and i tried ( TMS) in liverpool also without success – i keep as active as i can on my better days! so i go to the gym 2 or 3 days a week – without the pain life would be much better! and iv’e been following stem cell therapy for stroke for over 20 years and i am very hopeful for this treatment to show great possibility’s!.. hope you find relief-andy

    2. I know what you mean, Leonie and you write it all so eloquently! Over stimulation is what we must avoid and that makes life all pretty simple, doesn’t it? How did it turn out with your new neurologist? I so get what you are talking about because I had a severe horse wreck (job related) about 11 years ago, and you amazed me because in all of that time, I’ve never read anyone write something so close to what I experience. I know just what you mean when you say you were burning all over just typing what you did. You got a little stimulated as you were reliving all of the issues you deal with daily. I SO get that!!! I hope to hear from you and find out how things have gone for you over the last 4 months or so!
      signed, Virginia

    3. Eat what the cavemen ate and organic. The sicker you are the longer it will take to get rid of the toxins your body is holding to cause this. Check out leaky gut syndrome.

  4. May God Bless you! I’m so sorry that you have lived in such pain for so long. I also have CPS. No one can understand the feelings of a total body “steam Burn” sensation unless you’ve been in a fire or have CPS. Whenever I say I feel like I’m burning it is confused with me meaning I’m hot. No, it’s not that I’m hot, it’s that I feel as though Ive been BURNED all over my body. I feel as though there are tourniquets around every body part and that I’m not just being crushed but Gnashed forever by some invisible monster. I have a spinal stimulator, and take many drugs. The “crushed” feeling is improved on and off but nothing takes away the burn. It’s all day every day. The medical field has a responsibility to spread awareness of CPS.

    1. Exactly the feeling. It is impossible to describe because as you say it is not ‘hot’ it is as if you are being twisted as you say. I have now been prescribed amitriptyline at night now, it hasn’t kicked in yet but I do get real sleep. It is definitely not a pain killer. I wasn’t taking it properly as I misunderstood what the doctor wanted as he didn’t tell me anything about it. My daughter who is in the medical profession says don’t get too hopeful nothing will work. We’ll see. The burn is at night if I move around there is other pain and cramps but I am unfit.

      1. Hi I have been on a long long journey this year going from three neurologists neuropshchatrists psychologists and psychiatrists. I have the burning pain that no one seems to understand. It started with a patch on my back last year and has spread all over me. I haven’t had an injury but have had a lot of emotional and stressful situations and it seems this is the result. I went to a pain clinic who said that my nervous system has got stuck on red alert I.e became sensitised. I am taking 40mgs of ampitripilyne and this really helps. However I am still in the mist loneliest place I have ever been as no one except other sufferers knows what this nightmare is like. Please please could anyone respond with any piece of hope or comfort or even chat as to speak to someone who has this awful condition so that I don’t feel so alone. Thanks.

      2. About the amitriptyline, did you work that out? I take Nortriptyline at bedtime and that has been a Godsend for me. I was very sleep deprived when I first saw my pain management person. She had me do a sleep test and those results led her to believe my problem was pain keeping me awake all night. (well, DUH, huh?)…so she prescribed the “Nor” for me and I’ve been on it about 8 years now and I take it right before bed (50 mg capsule) and I can fall asleep most nights and stay asleep at least 4 hours or more. I think the NOR and the amitriptyline are related. They are not the same, but one turns into the other when it is consumed by the patient.

  5. Your thorough and succinct information on CCS is much appreciated. It is difficult to talk to family and friends because of the complexity of this affliction but you have provided something that can be shared. I am fortunate because most of the time have sensations that are more like pleasure than pain but when my condition worsens I have experienced the pain and other symptoms described here and I can empathize. When my mother was my age I now realize she suffered from the same affliction and unfortunately I did not understand at the time…

  6. I suffered an ischemic stroke in August of 2014 that involved the left side frontal and parietal lobes. I immediately noticed numbness in my left hand. Within weeks, the numbness morphed into a burning pain in my left hand forearm and shoulder then eventually thigh, shin, foot, face and eye. My neurologist said that my pain could not be the result of the stroke ; as my thalamus was not damaged by the stroke. When I asked him what , if not the stroke could be causing this pain. He stated ” If I knew that, I would be treating it” After I fired him, I made an appointment with an other Neurologist with the University of Cincinnati. I am currently under his care and have been taking 25mg Amitriptyline for about 6 months with no relief. He doesn’t sound too hopeful.. Someone, somewhere has to have an answer. I also suffer from dizziness and I’m not sure if it is tied to the Dejerine Roussy Syndrome or not, but it is every bit as debilitating. By the way, I do have days when the pain is hardly there. There were times in the last yer after a streak of several good days, that I thought it was over and I was in the clear. Only to wake up an other day just as bad as ever. Kind of like plying shoots and ladders.

  7. I have had CPS since a hemorrhagic stroke in Feb. of 2014. i have taken lots of drugs, currently i am taking Lyrica and amitryptiline. Neither of these work. I know this is one of the syndromes the medical field does not know much about and i don’t expect a miracle, I would just like a bit of relief. it is difficult to work. i try to be as active as i can, that seems to help take the edge off, but the syndrome is often worse after exercise. I am pressing ahead as best I can.

  8. surfscott… Maybe you’re friends mom will have better luck, after 4.5 years of silent stroke (before carotid endarterectomy surgery anyway) medical marijuana began causing central pain, joint pain.. Although they say its a vasodialator I think its a vasoconstrictor, either way if you have plaque buildups or small dissections its gonna dislodge any clots… Sativas speed up your heart rate wich will make it pump blood faster ( same effect I think) purple weed is usually indica which wont do that.. Anyway I’ve been away from it for a couple years (surgery a year ago) vodka helps me and avoiding sugar… I have degenerative disk disease and I hear it causes joint innflamation but it’s very similar to central pain caused by weed with my brain. Anyway… I don’t think it will help with crazy bursts of electrical firing from the brain (I.E. neuropathy) alcohol slows nerve firing ( mid-shelf vodka, maybe blackberry lemonade crystal light and water to keep you hydrated… 20mg immediate release paroxetine should lively her up, helps me.

  9. My 31 year old daughter has Central Pain Syndrom resulting from two brain surgeries in 2007 and 2009 to decompress an arachnoid brain cyst. Has been on a continual stream of pain meds but not much relief. She has been unable to work due to her condition. Please help if you can! Thank you

  10. THANK YOU FOR YOUR WORK. I HAVE THIS CONDITION SND AND OR FIBROMYALGIA , BUT I THINK IT’S CPS. MY LIFE IS HELL. NOBODY BELIEVES ME BCUZ I DO NOT LOOK SICK. I just lost custody of my daughter and CHILD PROTECTIVE SERVICES used my prescriptions (still low dose comparatively speaking, 100mlg fentanyl every 3 days, hydrocodone 10, 4 per day as needed, amitriptyline, busiprone, diazepam all only as needed but bcuz I want my child back, I dont use what I really need and it is unbearable most days. Can u diagnose me? I NEED HELP, I AM DYING. Thank you.

  11. I have had CPS for 15 years. It is debilitating. I had found a great pain specialist that made a normal life possible to a certain degree but with the increasingly strict rules of the DEA will make my treatment not possible. I take the maximum dose of Neurontin (4000 mg), 50 mg of Baclofen per day, Oxycontin every 8 hours as every 12 didn’t work and Norco for breakthrough pain with is frequent. It has worked for almost 15 years but the new DEA rules will soon make my dosage impossible. I am seeking a doctor that can come up with a different plan for all my issues and isn’t scared of the DEA so that I can still work full time and provide for my family. In addition, I suffer from basilar migraine. This adds to disability and exacerbates the CPS symptoms.

  12. KLC, I feel so badly for the pain you are suffering and also feel for you trying to continue to work in order to provide for your family. I don’t have any answers but wanted to say that the new rules concerning narcotics have certainly hurt the folks in “our world,” the ones, like us, who suffer endless chronic pain and have no hope for it to go away. I’ve noticed that some doctors are in fact afraid of the “DEA” and Federal guidelines and I can’t blame them. They have to be careful of their way of earning a living to provide for their families, too. If they lose their license to practice, it will hurt so many people who do not have CPS and therefore are helped by their doctor’s treatment and care. But it is infuriating, Iknow. I have to fight it all the time. My meds and treatment are all under CA workers Comp and they just got much stiffer laws concerning narcotics prescriptions. Meds that I have taken for 8 years and which seem to work the best toward giving me some quality of life are always being questioned and, worst of all, being suddenly taken away with my being left with little to no time or meds to “wean off.”

    1. KLC… I guess I cut off when I was ending my comment above. I hope someone reading this can help you more than I can, but I do want to encourage you to keep holding on, your family needs you, and I’ll be praying for you. (CPS since 04/04 after severe injuries due to a bad horse wreck which resulted in 4 plc fracture of C1, dislocation of skull from spine, spinal cord damage, brain damage and a lot of other conditions and syndromes that come from such injuries)

  13. I have a friend that has arthritis and they have used marijuana to help with the pain. I don’t even smoke but hear you can mix it with food. Would this help with the constant pain I have with CPS. I live to be out doors but this has really affected my out door activity due to the pain!

  14. I have central pain syndrome. I am 36 and experienced a left basal ganglia hemhorage at the end of May, this year. I am at my wits end. I have severe bouts of burning and crushing on my right arm, hand, leg and foot. Just in the last few days I have new pain on my right ear, down to my right shoulder. I was lucky to receive a proper diagnosis just a few months after being released from the hospital. I was unable to complete my therapy as a result of the severe burning pain. I try to explain that at its worst it feels like I have just rolled my entire right side through hot coals, and touching or even walking is like pressure on raw, exposed skin. I am currently on tramadol, nortriptyline, Gabapentin, tizanidine, verapamil, and morphine for my “episodes” I try not to take the morphine, except when absolutely necessary. I often have to remove clothing and cannot wear a shoe on my right foot. I feel like I’m crazy when trying to explain this to family and friends. They don’t seem to understand that it’s not normal stroke pain, or “my feeling coming back” my husband is a God send, and is the only person who sees the pain that I experience. I’m just afraid that this will never get better. I also am experiencing an increase in blood pressure, I’m assuming from the meds and constant pain. I’m just glad to know that there are others and I’m not crazy. Good luck to you all!! ❤️❤️❤️

  15. Six years ago I had a workplace accident in which I was electrocuted by 277 V and fell from a ladder struck my head on a windowsill. Since then I suffer from post concussion syndrome and experience headaches, dizziness, nausea, depression, fatigue and other symptoms related. As time progressed still I also started suffering from Thalamic pain syndrome (outdated) or CPS today’s terms and has progressed. I have read all the above and have experienced most symptoms in one form or another. Starting about a year ago I started experience tingling or pins and needles on the left side of my brain and progressed to a mild electrical shock which I thought I could actually hear (swishing sound) and progressed to tingling from my head down to my fingertips and to the tips of my toes. A few months past and I started experiencing severe electrical shocks from my brain down to my fingertips at which time I searched for another neurologist although my current neurologist at the time specialized in neurological pain and referred me to the doctor and I am currently seeing. Still experimenting with meds but at the time I am taking primidone and mirtazapine which have their own side side effects. My life has changed drastically and CPS is very debilitating. I am glad that I ran into this site as I have been searching for rhyme or reason to what was really wrong with me Along with my neurologist I am searching for ways to better my life but it sure looks grim !

  16. Hi Ken, A couple of things you wrote are making me think you might be dealing with some rare situations due to your head injury.

    The electrical shock symptom sounds much like L’ HERMITTES. Look that up online and let me know if that sounds familiar. If so, tell your neurogist about it.

    Also, you are reporting some SX (symptoms) that sound a lot like what a lot of folks with Chiari Malformation experience.
    The whooshing sound in particular. People whose Chiari began to manifest post head injury often describe that whoooshing sound in the exact words you used.

    I also have what they call “Acquired Chiari”. I can explain further if you have read up on CM and think it might be something to look into.Chiari causes central pain syndrome.
    I’d be happy to help you out in your quest to figure out what has gone on in your physical condition after such a tremendous injury.

    Virginia

    1. Thank you Virginia
      What I failed to mention was when I had the extreme electrical impulse I also heard something that sounded like between twanging a large rubber band between your fingers and crashing the keys the keys of a piano without the long drawn out tunes. Have you heard of this ?

  17. I also may have had a stroke a few years ago but since the spot on my brain has a tail to it they are calling it a head trauma

  18. I was just diagnosed with CPS after almost two years of excruciating pain that doctors couldn’t find a reason for. Despite Leslie’s annoying repeating comments, I would say not to completely dismiss what she’s saying. Six months into my battle with unimaginable pain, I was beyond desperate. I wasn’t getting answers from my doctors, the medications we were trying weren’t working, and I didn’t know how I was going to keep going if something didn’t change. I decided to try the Autoimmune Protocol (AIP) diet, which is a stricter version of the paleo diet. I was willing to do just about anything to get any relief. Part of the purpose of the AIP diet is to cut out inflammatory foods since inflammation can lead to a rise in pain sensations. In six weeks, I had some relief and in three months, I was experiencing less pain than I would have thought possible anytime in the previous nine months. It’s not a miracle cure by any means, but I can immediately tell a difference if I’m not careful about my sugar intake on a daily basis (I keep my white sugar intake below 20 grams per day–usually closer to 6-10; this includes sugars in foods other than fruit). This is almost impossible to do if you are eating a “normal” American diet. So, even if you aren’t interested in trying AIP, you might want to try cutting out dairy, grains, and sugar from your diet, at least on a trial basis. I hope this helps someone else who is suffering from this syndrome. It’s given me some hope and some control and might do the same for you, as well.

  19. I’ve had CPS since 27th June 2010 when I tore an artery in my neck and had a stroke … i’ve been through depression suicidal thoughts and lots of pain, every drug I try I get wiped out by the side effects, I recently discovered that Diazepam relieves most of the pain takes away the stress and even lowers my blood pressure, My Dr and my neurologist will not prescribe diazepam because of the long term effects, I cant believe it I found something that works after 7yrs of constant debilitating pain and I cant have it …..BTW this is Australia … so now reduced to buying it illegally …

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s