Chris DeWald | Central pain syndrome
Let me introduce you to central pain syndrome, a.k.a. CPS. This is a real nasty side effect from strokes and brain injuries. There are other causes of CPS, but let me shed some insight as to my partnership with CPS. CPS does not have to begin immediately after a brain injury, but can come on at a later stage from the result.
I have had a bilateral stroke, which means I had been attacked from both sides. My CPS was mainly in the top of my numb foot. Now although my foot is numb from touch.
I had a feeling like someone driving a hot large nail through the top of my foot. It was so bad that I cried in anguish. My left shoulder was less painful, but felt like someone was nailing a picture in it. I am now on a great medication that has almost completely stopped this pain, so I am lucky. You need to know that this pain is real for the survivor.
You may not see it, but “Good grief, Charlie Brown,” it sure hurts.
Let’s turn to the National Institute of Neurological Disorders and Stroke under the National Institute of Health – www.ninds.nih.gov/disorders/central_pain/central_pain.htm
What is central pain syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord.
This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma or Parkinson’s disease. The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes.
Central pain syndrome may affect a large portion of the body, or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures.
Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.
Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain
According to the CPSA (Central Pain Syndrome Alliance) – www.centralpain.org – central pain syndrome can be a steady, sometimes deep burning, aching, cutting, tearing sensation CPS may be mixed with sudden, excruciating shots of pain. It is often mixed with other distracting sensations like cold, tingling, a “pins and needles” effect, a ballooning sensation, throbbing, and the feeling of a dental probe on a raw nerve.
Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling that can be irritated by any light touch, sometimes just the feel of cloth on skin, which can make dressing an ordeal. Sometimes the touch of a loved one, or family member, in fun, or love, may often be a way to overwhelm the brain with the pain from CPS.
Sometimes the hands and feet are affected with a numbness that is painful, and does not offer any relief, only adding to the pain. It is often aggravated by temperature changes, particularly cold.
It can take months, even years, after a stroke to make it’s appearance, well after the patient thinks they are well on the road to recovery. CPS can often cause depression, anxiety, anger and frustration.
In some cases, when a person rates the pain as a 9 or 10 on a pain scale, and there seems to be no relief in sight, no hope or understanding with support, they may even come to feel that suicide is the only way out. In that way central pain syndrome can be a life-threatening condition.
We have defined the following things that can we call triggers to start or increase one’s sensations and pain levels: Movement, daily activity, ROM exercising; exposure to sun, cold, breezes, AC, barometer changes, weather. hot and cold, rain, snow; real pain or swelling, stress, anger, depression, touch from another person, blanket, tiredness. Sudden movements, ie yawning and other reflexive involuntary movements, like sneezing, being startled, fear and a vibration as riding in a car.
Synopsis
Knowledge is power. Most medications are ineffective for treatment of CPS. Therefore we must rely on our physicians. We as caregivers and patients must be aware this may not be in the survivor’s imagination. It was very real to me. No pain killers would touch the degree of pain I felt. I do believe the pain meds induced sleep which in turn assisted me.
Here are some more websites to assist you.
- www.wrongdiagnosis.com/c/central_pain_syndrome/intro.htm
- www.painfoundation.org/learn/library/pain-conditions/central-pain-syndrome
- www.strokeassociation.org/presenter.jhtml?identifier=3030470
- www.painonline.org/intro.htm
- Column by Chris DeWald
Thank you so much for this information Chris. As a survivor myself, thankfully I’ve not experienced CPS yet. At almost 5 years post, I probably will not. I know have your article as a great source of reference in case I do develop problems.
Stroke has no mercy whatsoever on a person that’s for sure. It can keep on giving when we least expect it.
The sleeping medication zolpidem (aka Ambien) has now helped hundreds of people who have brain damage and a lot of them had a stroke. It includes reversals of paralysis, speech loss and even pain in a few patients. The cases are mostly in South Africa where this surprising effect was discovered by Drs Nel and Clauss, but there are reports now from several countries. Do a Google search on zolpidem and brain damage, stroke etc.
I think Chris should try zolpidem as soon as he can.
Good luck
Andrew
chris, i just love reading your articles, they are loaded with correct information and knowledge and experience, who better to write them than a stroke survivor themself.no one can understand a stroke unless they have walked in our shoes. i was fortunate to not have to deal with what you have had to. but i sure can sympathize with you. cps must be an agonizing deficit to deal with. i can only hope and pray you find relief soon. knowledge is the key to any illness. thankyou so much for this article and keep them coming!
Thank You ladies and gentlemen. The med that was precribved to me is Cymbalta. This was a wonder drug for me. I am not a doctor no play one on TV, but this works for me. I thought there would be no end to the sudden pain onsets and heavy meds would not work to correct the pain. It knocked me out and therefore the pain was gone. Hahaha
My physician recommended it for it had benfits to fight depression and was aso nerve pain. Dang the doctor was right..again…..
Please always consult with your physician and advise them of “all” the meds and over the counter meds you take. Do not window shop docs and get drugs from a variety of Physicians without them having communication about your condition.
My GP and neurologist keep an eye on me. I need it too, I seldom listen to their advice(Impulsiveness)…an article I did a few ago…Thanks Again
Great article! Useful to give to medical professionals, since so few of them have heard of this condition. My stroke (lacunar, and very mild) was in 2001 and the CPS appeared in late 2006 while I experienced extreme stress during the illness and death of a loved one. My legs now sting and burn all the time and I can only tolerate fleece, so it’s sweatpants, short skirts or shorts for me. It’s a good thing I’m retired! Lyrica ( usually prescribed for fibromyalgia) and Cymbalta help to take off the edge. I find that the only thing that really helps is distraction. TV, grandkids, whatever. Please spread the word about this, because so few people know about it and so many go misdiagnosed and unrelieved.
i have been suffering from thalamic/central pain for almost 18 yrs. it is a lifelong condition, for which there is no cure. my stroke was very mild, but the pain set in
after just a few weeks. i wrote a poem on “adjustment” for the centraL pain alliance, WHICH DESCRIBES OUR FEELINGS: “Oh, GOD, IT IS SO HARD TO ADJUST, BUT WE LEARN THAT ADJUST WE MUST. CUT OFF FROM ALL OUR YESTERDAYS, BEFORE US LIFE’S MOST DEMANDING PHASE, OUR TOMORROWS HIDDEN IN IMPENETRABLE HAZE, MERCIFUL IGNORANCE OF WHAT WE’LL HAVE TO FACE – NOT TO REAILIZE NOR DEAL BEFOREHAND WITH THE TEST OF HOW MUCH PAIN WE CAN STAND – A TEST UNRELENTING AND WITHOUT END. OVER OUR BODIES WE HAVE LOST CONTROL, A MEAN STRANGER BURIED HIMSELF IN LIKE A MOLE. OUR MIND DETERMINES HOW MUCH OF US HE STOLE. FROM DAY TO DAY THE FIGHT GOES ON, LOOKING BACK ONE DAY, WE’LL KNOW WE HAVE WON. EVEN THOUGH IT WAS SO HARD TO ADJUST, WE LEARNED, INDEED, THAT ADJUST WE .MUST.
URSULA PEGG
CPS is a very real and yet almost-unheard of pain. It is caused by Central Nervous System damage that somehow prevents the proper working of neurotransmitters in the brain, resulting in the endless sensation of severe pain in the body. Chris, you are lucky to have found pain relief with Cymbalta. CPS sufferers can sometimes get relief with medications that affect neurotransmitters – anti-convulsives, etc. But often they cannot.
It is a true disability with no visible signs, so others find it difficult to understand. What is far worse is that most people recoil in horror when they hear about it, and don’t want to believe that such a thing can exist. A disease comprised of nothing BUT constant, agonizing pain, that has no cure and will last your entire life? It sounds too horrible to be real. Many, many people don’t want to even think that such a thing can happen. And yet it is estimated to be as coomon as Parkinson’s Disease.
Combine its brain-created pain with the fact that spasticity is often a common side-effect of the disease, which results in actual peripherally-cause pain upon movement. You end up with an utterly disabling disease that can drive a person to suicide.
I pray that those of us who suffer from this may someday be truly blessed with a cure. Stem-cell therapy may yet provide treatment.
In January of 2009, my Husband and I happily gave birth to our 2nd child. 7 days later I suffered a stroke. I thought I was one of the lucky ones…I had survived…able to talk and only unable to walk for 8 days and only hospitalized for 10 days. I found out that the entire right hemisphere of my brain was one big malformation and that I had a blood clotting disorder and that I would have to remain on anticoagulants for the rest of my life, so I was happy to move on. However, the chronic and severe pain in my lower extremeties soon set in and my doctor told me that there was nothing wrong with me and that I must be suffering from Post-Tramatic Stress Syndrome. Long story short…I was just diagnose with Thalamic Pain Syndrome, which is essentially causing the Centralized Pain Syndrome in my lower extremeties. I have been unable to work and barely able to take care of my children or my household. It has been an unbearable year for myself and my family!
I have had CPS for 15 years, although not diagnosed correctly until recently! As if it’s not bad enough we have to endure almost constant torturous physical pain, the treatment from doctors/medical professionals borders on abuse itself. It’s exhausting just to try to survive.
I got some help for the pain in the beginning from antidepressants. However, the meds stopped working, and I have CPS ALL OVER MY BODY (i.e. EVERYWHERE!). I’ve tried Cymbalta, Lyrica, etc. with no help.
But Chris, if you don’t mind me asking, did it take a while being on the Cymbalta for it to work on the pain? And did it take a rather large dose?
I’ve tried just about everything, and pain meds help at least some times so I can function some. But the way pain clinics are set up, it’s like they’re drug dealers! I’m not even allowed to see or talk to the actual pain physician; I have to see a Physician’s Assistant every month. And he’s in such a rush and not focusing clearly, and messes up my prescription almost every time. Plus, they’ve made me take the patch (fentanyl), which causes horrible, life-threatening side effects, including atopic seizures – where I suddenly lose consciousness and fall, stiff as a board, until my body hits the closest object or hard floor. I’ve been to the ER 5 times for different, rather serious injuries themselves, due to these falls. And my HEAD has hit first (and very hard and loudly!) at least 30 times!!! It’s a wonder I’m alive, as my head has been hit all over by sharp objects (corners of dressers, metal cabinet handles, bathtub, hardwood floor, etc.) I can’t even do yoga now. I was trying to calm down my stress and did a bending over pose, only to lose consciousness and hit my head flat on the top of it onto the hard floor, crushing in my neck!…And with all this, plus numerous other serious neurological symptoms, the doctor….oh wait, he’s NOT a doctor; he’s a “physician’s assistant” who is NOT supervised…..anyway, he will not let me try anything else. I am stuck taking this medicine that has proved to be fatal in several cases. To those who are truly helped by the patch, that’s truly wonderful; it just is dangerous for me; and I need to have it changed. And last time, the physician’s assistant made a huge error on my prescription, leaving me without ANY meds for 4 days, suddenly after having been on this stuff for years! But the doctor who’s supposed to be there to supervise him wasn’t even there, and wasn’t within contact (supposedly). And still they wouldn’t even let my mother talk to the doctor! So, I’m stuck with this stupid PA “drug dealer”, who’s forcing me to take a dangerous drug, without monitoring the drug. So basically, I have no actual doctor.
And this is the 3rd pain clinic I’ve been in. The 1st doctor stopped treating pain with meds and just focused on back pain physical rehab and non-narcotic meds (as the OTHER side of drug dealing – the ACTUAL “addicts”, abuse the system and make it difficult, if not impossible for people with REAL and even PROVEN, DOCUMENTED CNS pain issues to get just a little meds so they can somehow survive through the relentless, excruciating, torturous pain.) Then the 2nd pain clinic was actually worse than the one I’m at now. Patients had to sit in the waiting room for 5-8 hours just to be seen. Then a nurse saw you and messed everything up. And that doctor ended up losing his license.
But please don’t think I have anything against nurses, or even physician’s assistants. I think it’s asinine for them to be given autonomy in place of not only an actual Doctor, but a Doctor who is an actual SPECIALIST. In which case, the Doctor would have a pretty good deal of schooling plus experience plus specialization schooling and training. While the PA or CNS has a 2-year degree (which is actual 1 year of schooling and 1 of clinical rotation) and sometimes they have only experience. Yet they are given quotas to reach of more than 20 patients per day (all without the doctor being there!). And most of these patients have complex, serious issues, which can stump to best specialists. I am just flabbergasted that this treatment….or mis-treatment is permitted.
I am so sorry for going on, and on. But I’m SO exhausted! I have like no immune system now, and my adrenals have crashed after years of cortisol being 4 times higher than normal. I even tried to get into Cleveland Clinic’s Chronic Pain Rehab Program, and the CPS specialist recommended me for it, and for me to be inpatient, due to the seizures and difficulties with meds, so they could work that out and get me stabilized. I was and AM willing to put myself through more torture through the physical therapy. [side note: I used to LOVE to exercise, and played all kinds of sports, did aerobics, yoga, pilates, etc. But with the CPS when I try to exercise, even just walking briskly, I'm so flared up in the sharp, burning, and outright indescribable pain, and swollen and throbbing all over in muscle spasm pain, on top of it, and I can't sleep for days! I HATE THIS!!!]. Anyway, when I went for the chronic pain rehab/CPRP, they had me fill out 2 hours worth of questionnaires, then said that I was a good candidate for the program, and then when time to schedule my treatment came, she informed me that they no longer had inpatient for that program (despite the website and doctors there saying otherwise). In fact, she (a nurse, herself) said the CPS specialist/neurologist who referred me (and was located on the same floor, not far down from her CPRP office) was “stupid for telling me that; he had no right to do so; and someone needs to educate him”. She said they were changing it to outpatient only, and patients had to stay in a hotel on the campus. But I couldn’t do the program because of the seizures. AND I WAS STILL JUST TRYING TO GET OFF THE STUPID MEDICATION THAT CAUSED ALL THOSE DANGEROUS, LIFE-THREATENING SYMPTOMS. I wanted so badly to attend the program too, as it had stress reduction methods, biofeedback (with which I totally believed I could reprogram my CNS). But after having to make a 3rd appointment there to see the CPS specialist again, he just said there was no treatment for CPS, although he would recommend opioid-rotation. But HE wouldn’t treat me; he said I had to find someone closer to me. And as I’d already struck out on 3 pain doctors/clinics around here, I asked him if he knew anyone he could refer me to, and he didn’t. He said he THOUGHT there was a CPRP with inpatient in Boston, but not for sure. So, I was left with NOTHING. (Except more BILLS! That nurse had my time of only filling out questionnairs billed as “EMERGENCY” and charged $600!).
OK, I will HAVE to shut up now as my body can’t stand sitting at the PC. But in closing, I do need to stay that the only thing that has kept me hanging on through all of this is my family and faith that I was somehow meant to overcome this and then possibly be able to help someone somehow someday. But I do not have a family of my own; in fact I’ve lost everything I worked so hard for and was so successful at and loved so much. I’ve been here for my family (parents, sisters, nieces, nephews, aunts, etc.) when they needed anything, until recently when I haven’t even been able to take care of myself at times. Yet they don’t even want to drive me to a doctor’s appointment or the store when I have Meniere’s so bad that I can’t drive and can hardly stand for days. My mom saw how 2 of the doctors were and just said it’s too frustrating for her; she can’t deal with it. Unfortunately I do not have that option. And it’s actually turned out that I’m nothing but a burden to my family; they don’t even want to deal with me……..even though I’ve been practically killing myself just to stay alive and make it through the torture, yet still be there for them. It doensn’t matter though; they’d clearly be better off with me dead and gone.
So, now I’m left with the faith I HAD. With the increasing difficulties with doctors and just EXISTING, and with all the unanswered prayers, and the disappointing “positive thinking” gone down the toilet, I’m not left with any other options now but to end it, I DON’T WANT TO GIVE UP, of course. I’ve tried everything I can think of….and it hurts just to think now. I’ve prayed and prayed and begged and pleaded with God or whatever positive spiritual being or entity might be out there……seemingly to no avail. And I’ve swallowed any ounce of pride I ever was able to obtain, and have even BEGGED my family to try to help me find help. But they’re too busy planning gambling trips and giving $1000’s to my alcoholic sister who does not even try to get help. They just keep enabling her, and then telling me they don’t have anything to give…not even help searching I guess. So, unfortunately, it seems that they really do want me out of sight and out of mind.
And I am so sorry to have vented this, ending up purging out way more than I meant to or wanted to. But I really am at a dead end…no pun intended. If anyone has any ideas how to best disappear I would greatly appreciate it. If I do end up actually dead somehow, I certainly don’t want them to have to deal with my dead body and disposal costs. There’s no need for a funeral, because all my friends are gone (I actually made the mistake of coming back here from CA -where I actually had the best, real friends and felt like family- to be here to take care of my nieces and nephews while their parents were too busy being alcoholics to take care of them. But now they’re in their teens and have lives of their own and don’t need me. But hopefully they’ve learned not to ever sacrifice their own happiness trying to please anyone; I have a good feeling they are going to do really well…..AWAY from here!). : )
Again, I really am sorry for my mind dump. I’m not giving up yet…I’m still holding out for a miracle…until I just can’t possibly hold on anymore.
I wish everyone the best, and I pray none of you have to live through the nightmares I’ve unfortunately stumbled upon (or deserved, or whatever the theory is!) : )
Eight percent of all stroke patients will experience central pain syndrome; 5% will experience moderate to severe pain. The risk of developing central pain syndrome is higher in older stroke patients, striking about 11% of patients over the age of 80. Spinal cord–related pain occurs in a very high percentage; research suggests a range of 25-85% of all individuals with spinal cord injuries will experience central pain syndrome.