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Patient Stories

Central Pain Syndrome patients share some symptoms and pain in common, depending on the cause of their CPS. In most every case, the pain seems to be made worse by a few key factors: touch, movement, emotions, weather or barometric pressure, extreme temperatures and stress.

We consider there to be four main causes for CPS:

  • Stroke

  • CNS injury

  • Parkinson’s & MS

  • Other

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Category of causes: 1. Stroke

 
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Nancy

I never thought I would have a stroke at age 38, but I did! After months of intense neck pain, I woke up one night unable to swallow or walk. I was diagnosed with a vertebral artery dissection, an uncommon diagnosis, but common for young, healthy people. Why? All of my genetic testing checked out. It was what they called spontaneous, meaning I may never know why. I was healthy, fit, non-smoker, blood pressure good, etc. I spent a week in the ICU and another at an acute rehab center where I learned how to balance, walk and swallow. The deficits I was experiencing come from a condition called Wallenberg syndrome, from the stroke’s effect on my brainstem. I was in therapy for months; occupational, physical and speech (for my swallowing). It was devastating and life changing. My left side was effected which caused me to lose temperature sensation.

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The numbness I experienced on this side turned into pain almost eight weeks after my stroke. I was diagnosed with central pain syndrome. I’ve tried many medications to help with this. The most helpful medication I have found is gabapentin. I’ve turned to techniques such as acupuncture and even tried Ketamine infusions. Unfortunately, the Ketamine infusions did not work for me.

I also got a permanent spinal cord stimulator implant. It is working to control about 50% of the pain. I haven’t had terrible days since it was put in. I still have many issues with my leg including hypersensitivity and the feeling like my leg is 5,000 pounds, but at least the nerve pain is being controlled a bit.

I will never stop searching for treatments that may help my pain level. While at times the pain is so intense I am in tears, I try not to let it define me. I’ve recovered to the point where I am active again and can take care of my two little ones as I once did before. Some days are not easy, but I am happy to be living life to the fullest I possibly can.

 
 
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Sandy

On the 2nd of January, 2013 at age 39, I had a stroke of the thalamus. Although they didn’t tell me it was in the thalamus. I was out off the hospital in three days and was on the list for physical therapy. On the second day at home my arm and leg started to tingle and I thought I was having another stroke. In the hospital they told me it was normal and it will go away. Well, I’m still waiting for the tingling to go away. The physical therapy started three months later. It was hard, three days a week and I was not getting anywhere. At that time I would get muscle pain even watching somebody else at physical therapy. My arm was cramping all the time and the pins and needles were starting to get worse. The only thing they would tell me was that I had to work harder and I was dismissed after half a year.

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In 2014 my pain got worse and was in my whole right side. Strange things like temperature or light air changes were giving me more pain. I went to a neurologist and he found out that I had a severe B12 deficiency which could have been causing my problems. So I started on the B12 injections and hoped to soon get relief. I’m still injecting myself but I haven’t had any pain relief, but my left side tingling feelings are gone. In 2016 I had a relapse due to stress when my husband had a severe accident. I was scared to death and I felt paralyzed on my right side for several minutes. My doctor said that this episode was caused by stress. I stopped working and volunteering at this point.

I changed doctors because I felt that I was not being taken seriously. With my new doctor I tried out some meds like Alprazolam and Betahistine, but nothing seemed to help and he sent me to a neurologist who specialized in MS as he was thinking I might have that. This neurologist said to me that I was remarkably recovered from my stroke and didn’t think it was MS, but he was willing to give me a MRI. This was the first time that I found out it was a thalamic stroke. And that was the only thing he could find.

Of course I was happy that it wasn’t MS but when I asked him what else it might be he simply said, “Lady, go and try a sport and a glass of wine.” I was devastated and thought I was really making this up in my head. In 2018 I thought I was actually going mad because I would get pain from not painful things like a breeze or cold weather. The pins and needles became burning pain and any weight carried on my right side gave me muscle pain, so I went back to the doctor again.

He sent me to the pain clinic because my insurance didn’t pay for another neurologist. At that point I was searching on the internet and found a few things about CPS. I joined a group on Facebook and because of them I knew what to ask next at the pain clinic, and I finally got my diagnosis of CPS! I was not making it up, it was real and it was not all in my head.

I first got a TENS unit but that didn’t work because my whole side was affected and they couldn’t seem to treat that big of an area all at once. They gave me a nerve block in my neck and that gave some relief in my head, neck, face and arm, but it only lasted for a month. I have a new appointment soon and maybe they will try the nerve block again.

I’m also on Lyrica and this does help me but the side effects are nasty. I have a foggy head in the morning and some brain fog episodes during the day, but I’m still happy to have Lyrica because it has reduced my pain. I hope that the future brings more options for good medicine with less side effects. The worst part with having CPS is that no one sees it, and people tell you that you look completely fine.

 
 
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Kathy

On Dec 26th 2015, I suffered a right internal capsule and basal ganglia hemorrhage - in simple terms I had a brain hemorrhage, a type of stroke. After the initial impact of the stroke, which left me with left-sided hemiplegia, I threw myself into my rehabilitation. I re-learned to walk, and slowly, despite the lack of fine motor control and sensory problems in my left hand and fingers, resumed life with ‘this’, my new altered reality.

Central Pain Syndrome (CPS) crept quietly up on me while I was working hard to regain lost function. It took almost 12 months, but by January 2017 I was diagnosed with Central Post Stroke Pain. I experience burning pain in the left side of my face, left arm, hand and fingers. It's not constant but triggered by cold, draughts, changes in barometric pressure, crowds and stress.

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Maybe it’s because I need to be in control, but I was fuelled with the desire to learn all I could to help in my recovery. I threw myself into research. Learning as much as I could about the brain, neuroplasticity and pain. This gave me sense of purpose and hope.

Reading books, ‘Googling’ my disease, and writing blog posts, I needed to learn and educate everyone - my partner, family, friends, anyone who cared to listen.

The hardest thing though was having to admit to myself that I couldn’t “fix this”, that there is no cure for CPS, that I had to learn to live with pain. Still through all of this I haven’t quite lost myself. I still have goals, I still have dreams, it's just now that I live with pain and as such tend to view the world through a completely different lens. I have shared more of the details along the way to being diagnosed with CPS on my personal blog.

 
 
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Scott

Ten years ago my life changed in one day. Brain surgery went wrong, I had a stroke, and became "disabled for life" with Central Post-Stroke Pain (Central Pain Syndrome). That was a difficult declaration for me. But, burning over half my body is real! I was in excruciating and intractable pain. I've battled for my body, swimming 2.5 miles, across Puget Sound and back! Every way I can win I'll take. I almost committed suicide, in our beautiful Olympic Mountains, but my family and neurologist helped me. A battle in my mind, caused by my stroke is another real challenge. Winning!

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Looking online for answers nine years ago, I found a "Central Pain Syndrome" Yahoo! discussion group. I read without writing, then began to contribute. I felt like I was not forgotten, first time in many months. For ten years, off and on, now at Facebook, I have been encouraged, and have encouraged others.

 
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Category of causes: 2. CNS injury

 

Kelsey

In 2008 I proved that anyone can fall off a horse and get CPS. Rewind to growing up as an athletic kid - I had many spills and as a seven year old in gymnastics I took a dive roll that resulted in an upper spine strain of some sort, causing extreme shoulder pain. I ignored this pain, mainly because I had no idea that it wasn’t normal. Fast forward to being seventeen and riding horses, and I was practicing jumping without stirrups (I don’t recommend this unless it’s necessary). My horse got excited and gave a little happy buck at the exact same time that I was landing on his back after the jump. He tried very hard to avoid stepping on me but did run over me while cantering, accidentally kicking my head below my helmet, causing a concussion.

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Then I went to sit and rest on a fence but before I made it to the fence I had gone unconscious and walked straight into the fence, bouncing off of it and clearly making for a quite comical dinner table discussion. Only unconscious for a brief minute, I really never thought very much of this event afterwords and none of the doctors I saw later on had, “did you hit your head and black out?” on their questionnaire, so I never thought to mention it. The concussion in turn caused tingling, some numbness, added muscle tension and pain, and breathing issues about five years later.

My story gets blurred from there as I shortly thereafter got the swine flu, and then stung by a nasty “mustache” (puss) caterpillar (flannel moth) while I had the swine flu (2009). I never paired the concussion with the onset of my spine pain and constant pain that seemed to plague the back of my head, neck and shoulders. It wasn’t until 2015 that a pain specialist suggested CPS and I realized that all of my post concussion injuries (torn muscle in back, sprained ankle, infected cat bite on hand, and both knees and hips seemingly strained) and surgery pains (wisdom teeth surgery gone awry) were playing on loop.

Several doctors believed me to have Fibromyalgia (which I now know is a common misdiagnosis for CPS) or some yet undiscovered auto immune disorder, but once I understood Central Pain Syndrome as it relates to even “non-traumatic” head injuries (minor concussion), it felt like the puzzle finally fit together. I discovered Dr. Forest Tennant on YouTube in 2016 and found that his hormone protocol of Oxytocin and hCG was helping to restore the nervous system of some EDS and CPS patients so I was eager to try it. Finding a doctor willing to use hormones to treat pain was extremely difficult, but I made it my daily pursuit and in 2017 I finally found a doctor who was already using hCG for Parkinson's patients. This hormone protocol has been changing everything.

I used to get these intense spine episodes where the only way I could breathe was by hyperventilating. The only way I have been able to describe these episodes is as though someone reached into my mid spine from behind me and was squeezing it, trying to snap it. The hCG resolved these episodes, but it took eight months of being on it. The Oxytocin has been an incredible pain reducer. Now, in addition to these hormones, I’m using Frequency Specific Microcurrent to treat and heal the pain and so far, in a little less than a year, my pain has come down from a daily 7-8 to a daily 2-4.

I have used the specific frequencies called Central Pain Alt (created by my doctor), Concussion (standard protocol), Inflammation (standard protocol), Trauma Extremity (created by my doctor), Parietal Trauma (created by my doctor), Chronic Pain (also created by my doctor), and a sequence I made up which includes a combination four “treatments” and seven specific body parts: (treatments) 1. Trauma, 2. Toxicity and 3. Inflammation, 4. Vitality - (body parts) 1. Nervous System Whole, 2. Nerves, 3. Muscles Shoulder, 4. Spinal Cord, 5. Joint Capsules, 6. Muscle Tissue, and 7. Hind Brain. Additionally, I have a custom made "Phantom Limb" frequency, because to my understanding CPS is much like phantom limb pain.

I also tried Cymbalta, which made me way worse, but I was on it for three years and didn’t know how much worse it was making me until I got off of it. I tried B shots which hurt like bee stings and didn't seem to do anything for me. However, other medications helping me have quality of life now are a topical Ketamine compound (10%), Amantadine (100mg), Low Dose Naltrexone (4.5mg), low Dose Lithium (20mg - from supplement store), Trazodone (200mg), Singulair (10mg 3x daily - this is known to have a side effect that stops glial cell activation) and an array of supplements including B Complex, Rhodiola, DHA, Vitamin D, the best multivitamin there is and CoQ10.

Most everyone thinks I am completely healthy because I look capable, I am a professional photographer and dog behaviorist, and I seem (mostly) "with it". But in reality I have been 50-90% bed ridden for almost a decade with extremely devastating pain everywhere I have injured myself after the concussion and throughout my CNS. Also, I have experienced the memory issues that most don't experience until they're diagnosed with dementia. I pushed through college, but my entire system collapsed shortly thereafter (2011), which started me on my path to getting diagnosed.

Two key elements to my healing have been reading Dr. Caroline Leaf's book "Switch On Your Brain" and looking for doctors in the "natural, holistic, integrative, or alternative" sphere of medicine, completely outside of insurance, who are also well rounded MDs and DOs.

I am so grateful that I discovered Dr. Tennant and his protocol, along with a local doctor who started me on FSM. I believe strongly in the hormone protocol of Dr. Tennant and in FSM, and I'm doing everything I know to help others try these protocols in hopes that their pain will reduce or reverse, too. My life has been dramatically improved since starting these two main treatment routes in 2017. I made a video (watch here) with more in depth information about the treatment routes I have chosen (Dr. Tennant hormone protocol and FSM) with hopes to help others become aware of these protocols and try them.

 
 
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Michelle

What I believe to be the start of my CPS journey actually started years before it struck me. Roughly 20 years before CPS I ended up in the ER for severe headaches that I’d had for 2 weeks. After 2 shots of Demerol to calm my head and many blood tests that said I was fine, the doctors did a spinal tap and discovered that I had viral meningitis. They said there wasn’t a cure besides OTC medicines, I just had to wait until the headaches stopped.

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So I went home, took a week off from work to recover and continued on with life. Never did they tell me what was in store for me later on. Meningitis is an illness that causes Arachnoiditis, which causes the spinal cord to grow extra scar tissue and cysts. I believe I have more cysts but so far only one has caused issues. I was 31-32 when that happened. Fast forward to 40 years old - I’d been working in convenience stores as manager for over 17 years when, while shoveling one winter, developed pain in my left shoulder, neck and arms.

I started seeing one doctor after another for over a year when I was terminated from my job because I could no longer perform some of my tasks. But yet no one could tell me what was wrong. 2006 was the last time I saw a doctor for those issues as they just sort of faded away for a while. My primary doctor kept me on pain meds so I got by ok.

Then, in September 2012 I bent over to pick clothing off the floor and felt a stinging from my left armpit to the middle of my left breast. As soon as I stood up it went away. This went on into October when finally one day the pain came and never left. I decided it was time to get it checked out. After ruling out breast cancer I was sent to a neurologist who did an MRI and found an arachnoid cyst on my spine, pressing against the nerves that run to the breast. I was then sent to a neurosurgeon to see what he could do.

By this time I had to move with my arm tucked up against my breast to keep any vibration away, riding in the car was torture and I was embarrassed in public for having to hold my breast still. So I begged the surgeon to take the cyst off of my spine, the pain was unbearable. I couldn’t imagine living like that forever. Huge mistake! January 31, 2013 will never be forgotten.

I had the surgery and as I was recovering my spine was hurting more, like the incision wasn’t healing, but it was. Now, I had that God-awful pain from the middle of my back, around the left side of my body to my breast. The damage itself is at T-3,4,5 affecting my left side. What did it feel like? Intense burning, stinging, razors slicing and many swear words. I could no longer ride sitting up in our car, not to mention that driving was out of the question. My husband made a bed in the back of our SUV for me to travel on, it hurt too but was tolerable.

We even took two 1,200+ mile trips that way. We needed to go to Minnesota so I watched the sky while we drove and we camped at night, my husband doing all of the work. I could write a book alone on how wonderful that man is! Anyhow, the surgeon kept sending me to his pain management person and she was absolutely awful! I left her office crying every time. She was mean and by the end of the year I was looking for a new doc. She had tried enough injections, none helped.

I found a doctor at the nearest teaching hospital who was a neurosurgeon and anesthesiologist and went to see him loaded with papers I had printed about CPS. He didn’t even look at them, he said, I see your records, yes you have CPS and I see you’ve tried lots of injections so hows about we don’t do any more and try something else. I could have kissed him!

He tried a capsaicin patch, which was very painful (ask me and I’ll so you the picture) but didn’t work so we talked about the pain pump. He said he wouldn’t put morphine in it as he doesn’t do opioids at all but he would put a numbing agent in it. We did a trial and it helped! So in August of 2014 I had surgery to implant this pump. It’s been my savior for sure. I’ve had it in for 5 years now and have to say that my CPS pain is pretty well under control as long as I stay within my limits.

I also take 3,600mg daily of gabapentin and have 15mg morphine on hand for any breakthroughs. This is not to mention all of the meds I take for other conditions. Sometime in the next 2 years I’ll have to face replacing this pump and as long as I’m medically able to, I will definitely opt for a new one. As an ending to my story I’d like to note that I do suffer from a nice list of other illnesses to add to the battle. I’m always available should someone want to ask me about them.

They are:

  • Adhesive Arachnoiditis
  • Mitral Valve Stenosis/regurgitation
  • COPD
  • Diabetes
  • Osteoporosis
  • A possible mis-diagnosis of RA, new doctor is trying to disprove
  • OsteoArthritis
  • Seeking an Ehlers-Danlos diagnosis
 
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Category of causes: 4. Other

 
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Tim

A lifelong Virginia resident, my wife and I raised three boys and ran a successful concrete construction business. But all of that changed in 2011 when an implanted medical device (an IVC filter) went rogue and cut a lesion on my spinal cord. Before long, I was dealing with debilitating abdominal and chest pain, allodynia and temperature sensitivity and was soon in bed twenty-two hours a day. 2013 was a dark year emotionally but things began to look brighter after I discovered the CPS Facebook group.

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It helped so much to know I was not alone and to have support from folks walking in my shoes. Shortly thereafter, hope began to grow in my heart as learned about neuroplasticity and the possibility of reducing or even ending the pain by rewiring my brain. The work of cognitive neuroscientist Dr. Caroline Leaf helped me identify underlying roots that had allowed the pain to flourish and provided strategies to forge a way out of the “pit of despair” I was in.

Another turning point came early in 2015 when I began low dose IV Ketamine infusions. Being intolerant to every opioid tried, I was thrilled when Ketamine offered a bit of pain reduction after the initial seven day treatment. With the help of an awesome support team including a pain psychologist, physical therapist, chiropractor and palliative care provider, I began to develop a toolbox of coping mechanisms that got me up and moving again. Slow and steady was the way forward but eventually momentum began to grow and by June 2017 the pain finally turned off in my brain for good. I’m still so amazed and eternally grateful.

I have continued to relate with my many CPS friends that cheered me on in my journey and was proud to be elected as Vice President of the Foundation’s board in 2017 and have transitioned to the Treasurer position in 2018. I am eager to support and offer hope wherever you are in your own journey as well as raise awareness of CPS in the medical community and beyond. You are never alone!

 
 
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Robert

Here is a pretty good story of where my CPS came from: I blew out a disk (L3/L4) in July of 2013 and had double cortisone shots to my spine four times over the course of the following year. In October of 2014, I fell down some stairs breaking my right foot and ankle. Tearing the ligaments and my peritoneal tendon. No surgery, but lots of cortisone, braces on the leg and a fast rolling knee cart for four months. In March of 2015 I fell down the same stupid flight of stairs, this time injuring my left shoulder. Then, in late July of 2015 I stepped on a bee's nest (without their permission) and received a less than warm welcome by the bees.

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The reaction my body had to those stings was not pleasant and required some time at the emergency room(s) of my local hospital. In August of 2015 I got an infection in my left armpit that caused bruising, pain, pins and needles and some swelling. Apparently this came from the bee sting incident. Then the symptoms spread to my head, face, neck and left leg. This all occurred during the same time that I was the primary witness (on the good side) of a waste/fraud/abuse investigation against a Senate confirmed political appointee. Think stress!

Fast forward to January of 2016 and after two trips to Mayo Clinic, I have my CPS diagnosis, and recommendation from Mayo to avoid doing things that hurt me, or cause me to stop breathing, like sleeping on my back. I wasn’t impressed. Though Mayo was/is terrific, their neurology guys are not very nice and didn’t really offer much in the way of a solution. They also suggested I attend their pain management program, which I considered.

They settled in on my medication: Cymbalta 120mg, Depakote 1,000mg, Verapamil 240mg, Nortriptyline 80mg, Indomethacin 75mg, Vitamin D once a week 50000mg, and continued physical therapy. Now, several weeks later, I have lower pain. levels 1-3. Which is awesome. I think those levels will go up a bit with stress, but they will be manageable.

 
 
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Karen

CPS is pretty hard to understand, even if you have it yourself. Pain is such a subjective experience and CPS is basically phantom pain. It is real pain, but it is pain generated by the brain and projected on the body with or without a corresponding injury in the body. As I write my feet feel like they are in very hot sand and the “cold” of my laptop under my hands is so intense that I need to put a cloth between my hands the laptop. This symptom is called allodynia, pain from innocuous stimuli. That’s just ordinary “less than level one” pain for me, hardly worth my noticing. If I were to look at my hands and feet, they would look perfectly normal. I also know this will pass in a matter of an hour or less, and then something else will hurt. CPS has a hallucinatory quality to it. It’s hard to tell sometimes if I am injured or if it’s pain from the CPS. I had no idea how bad pain can get.

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I tend to get quieter and quieter the worse the pain gets and eventually I go out of body. One attack focused on my left leg because I’d bumped and bruised my knee. My brain amplified that pain, my leg became paralyzed and I couldn’t lift my foot off the floor. The pain was excruciating. I tried to verbalize it because later trying to explain it to a doctor would have been very difficult to put it in words. “My left leg feels as heavy and dense as frozen concrete that is on fire and is being crushed.” My husband wrote it down for me, otherwise I would not have remembered it.

I’ve been prone to unexplained pain all my life so I think I was predisposed to get CPS. I have complex PTSD. Trauma basically rewired my nervous system. I was put on SSRI & SNRI anti-depressants in my thirties. These caused me to have more pain, which initially I complained of as a side effect, but that possibility was dismissed. I was told that I probably had Fibromyalgia, though the doctors I saw for that said I didn’t. I just learned to live with chronic aches and pains. The antidepressant Venlafaxine, which I was on for ten years did a lot of damage. It gave me spasms all over, but especially in my neck.

Not long after starting this drug I got a chronic migraine for six months, possibly from Lyme disease. Despite being treated for Lyme the migraines converted to ice pick headaches, and then ice pick pains all over my body. I also developed what was called trigeminal neuralgia, but it was also in my arm and ribs. I was still depressed, so I received trans-cranial magnetic stimulation (TMS) treatments. This cleared up my depression, but simultaneously the nerve pain on the right half of my upper body got worse, and I developed allodynia, a pain response to wind. I thought it was coincidence.

Several years later I went back for TMS treatments and my pain skyrocketed and all my vital signs went crazy; up and down for blood pressure, temperature, heart rate, unexplained weight loss. I had serotonin toxicity, diagnosed by my psychiatrist. That is what I mark as the beginning of my CPS, though my neurologist says it started when I started Venlafaxine or even earlier when I started antidepressants. In either case this drug was toxic to me, and caused CPS. Toxic exposure of the brain is a relatively rare cause of CPS. It took years to get diagnosed. Initially I was diagnosed with migraine.

Sumatriptan didn’t work, but made things worse, because they increased the effect of the anti-anti-depressants which were toxic to me. I tried three drugs similar to Gabapentin. They all made me thick as a brick, I couldn’t think and I couldn’t talk. One of them made me trip over my feet and fall flat on my face crossing the kitchen floor. Currently I take Oxcarbazepine which still makes me slow, but seems to do a little bit of something for CPS. I take Tizanidine PRN for muscle spasms. Only at night, which is usually when the pain gets worse, I take a low dose Ketamine via nasal spray. During really bad exacerbations I take two OTC Benadryl and a Promethazine suppository. This usually knocks me out and gets me to the other side of the night.

I use a daily steady dosing of CBD in the form of a tincture from cannabis, not hemp. I use cannabis extraction in a vape pen, some Indica THC to help me sleep, some just straight up CBD for day time supplementation of the tincture. This stuff really works for me, but it’s not for everyone. CBD is mildly mind altering but no more than Oxcarbazepine. Getting off Venlafaxine was crucial, but incredibly challenging, because in addition to being toxic in my body, it has a terrible withdrawal syndrome. It took 26 months to slowly wean off. My CPS improved dramatically, but unfortunately it wasn’t a total cure.

My biggest tool to reduce pain is ice. I discovered accidentally that it can calm down a big pain attack. At one time I was taking ice baths, but now I use frozen clay packs. I got a sub-zero freezer just to make them cold enough. I cover my neck and entire back. Cold air is often painful, but really cold ice is helpful. This is another paradox of CPS. Finally I have utilized mirror neuron therapy. If there is some behavior that triggers pain, that if I watch other people doing it and being happy, slowly over time I can expose myself to the trigger and desensitize it. The keys to this method, are small steps, modest goals and persistent practice.

These things help a lot, but aren’t exactly treatments.

  • Supportive relationships - emotionally, physically

  • Reciprocal relationships - give back

  • A humanized doctor that cares

  • A spiritual practice

  • Meaningful activity

  • Laughter and joy

  • Determination and dare I say it? Hope.