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CPS Sufferers and Supporters

These CPS Sufferers and Supporters have shared their pictures and stories with us. Please leave a comment on this page if you would like to be included.


76 Comments

    • I found this page through Facebook. I am a stroke survivor and CPS sufferer…if you are still taking stories, I’d be happy to share mine. I had a stroke at 35, out of the blue, they still don’t quite know what happened. I just turned my head sharply to the right, and my head exploded with pain. Two months later, they finally determined it was a stroke. I never lost use of anything, but my left side is in constant pain, always with a burning sensation. I can’t feel temperature there, and am hypersensitive to touch. The right side of my head is also affected, I get sharp pain around my eye and nose, and a feeling like someone is drilling in my skull. Meds allow me to function, but nothing completely dampens the pain, My leg is the worst, my shoulder is also pretty bad. I still teach fencing (I fenced my last competition right before I had the stroke) and work as a stage technician…I was laid off from my full time job three weeks after returning from the stroke (I was out for 6 months), so I’ve been struggling to find a job, but working wherever and whenever I can. I’d be happy to share more if you’ll have me!

      Thanks,
      Jim

      • Doug Sharp says:

        James, We will continue to take stories of CPS survivors for as long as we run this site, that is until CPS is cured. Please send a picture of yourself to me at dougsharp@channelzilch.com and I will include your story. Best wishes for a low-pain day.

      • louisemowder says:

        Doug, we will continue to have this Foundation long past the time a cure is found for CPS. As long as there *is* such a disease… as long as there are people suffering from injuries to the Central Nervous System… there will be a need for the CPSF. New advances in neuroscience will be leading to new and better treatments long after the CPSF has celebrated its 100th Anniversary!

      • Mauricio says:

        Yes.I learned this by \”doing it wrong\” for a while. Thankfully, I have a very panitet alpha reader.I always get that want-to-celebrate feeling after finishing a scene/chapter and want to send it off to her right away. But I force myself to wait now. I sleep on it, then read it over the next day. Without fail, I end up changing something. Sometimes it\’s minor, sometimes I add a whole new section, sometimes I delete half of it and start over.It\’s frustrating, but I\’ve learned that I will get more valuable feedback from my alpha reader if I send her something that is only semi-raw, not raw-raw. Only I should see the raw-raw writing. Because it\’s like my \”just woke up face\” it can be scary at times. I should at least brush my teeth and comb my hair, maybe dab on a bit of powder, before inviting a friend over.

      • Millie says:

        Louise, I am quite embarrassed, but this is a good example of part of my brain (memory) issues. I am very aware of Central Pain Syndrome andof course, I’m a member of the cause. So, do forgive my moment of forgetfulness.Thank you for the kindness of your words that reminded me clearly of what CPS is. WOW~ I used to be so very sharp and depended on my intellect so much, but now it sometimes looses itself in a mass of confusion and forgetfulness. I have no research to back me up at this point because as you are very aware, I am sure, there is little to no research on the subject of CPS and autoimmune arthritic diseases such as RA, Lupus and Sjogrens, etc. Yet, I am convinced based on my life experiences with these 3 diseases, that CPS is most definitely a part of these autoimmune arthritic diseases. I have been taking Neurotin (Generic-Gabapentin) for many years now, primarily for the Poly-Neuropathy that I have in all 4 limbs, hand, feet, fingers and toes. Prior to treatment some 12 years ago, I was bedridden due to the excruciating pain. The severity of my RA could very well place me in bed once more, but I am termined NOT to go there. I struggle to get out of bed daily, but I do! I get dressed in loose, confortable clothing and I work as an Advocate-Activits-Counselor almost every day. I live in excruciating and at times inhumane pain due to the RA. I have reached the top level of oral pain meds, so my Pain Management Doc has recommended with my Rheum’s approval to place a Pain Pump within me. The Dilaudid that I take orally now, will be placed within the spinal fluid and shower my brain with far less Dilaudid, but will offer far more pain relief, according to the people who I’ve spoken to who have experienced the Pain Pump for some time now. Hopefully, I will have the same relief that they have had and gain a much better quality of life. Tuesday, I am calling the Pain Doc to tell him to go ahead with scheduling the surgery. I am very ready! I also have a Fentanyl Patch that I change out every other day and it works fairly well the first day, but then that second day, I have returned to the excruciating pain, once more. If you’re on Facebook, please befriend me. You may reach me by searching for: IAAM Autoimmune Arthritis-Anthony Bottom line is that I believe without question that people with some Autoimmune Diseases and specifically, Autoimmune Arthritic Diseases, can have CPS, yet not all Autoimmune Diseases or AA Diseases will cause this.Thank you so much for sharing a bit of your history so it is better for me to understand where you are coming from with CPS. Thank you for the opportunity to share with you and all! I am always interested! God Bless!

      • louisemowder says:

        James
        You may be on to something. About 7 years before my stroke, I had developed an autoimmune disease. It took several years for it to resolve. At first it was excruciating: my hands and fingers blew up like a water-balloon exam glove. My knees and shoulders ached so much that I couldn’t move. It calmed down after oral Prednisone and some cortisone shots in my knees, but the diagnosis was never firm. First it was Lupus. Then it was an autoimmune arthritis. Then it was finally classified as Mixed Connective Tissue Disorder, based on the belief that I had developed an auto-immune response to my own collagen. My BP began soaring uncontrollably, and eventually I had a stroke.

        What is the connection between the autoimmune diseases and CPS? Excellent question. Can CPS be the result of an autoimmune disease? It certainly would make sense. After all, MS is an autoimmune disease, and its lesions cause Central Pain Syndrome. Central Pain Syndrome as an umbrella diagnosis for neuropathies of the Central Nervous System numbers greater and greater numbers of victims. Certainly within this “Century of the Brain,” we should be able to militate for research in these issues.

        Your post was several months ago, and I have been slow to respond because, well, CPS people only have so much time and memory. But could you *please* tell me what happened with your pain pump? Many of our members with Spinal CPS find great relief from pain pumps. They use a variety of medicines, however, depending on which is most helpful to them.

    • Stephanie Shelton says:

      I am 30 yrs old and have CPS. My name is Stephanie Shelton and here is my story. Growing up I went to a private school and played just about every sport. From softball to cheer leading to track, I was even on the swim team and did horseback ridding. I competed in pageants and modeled in fashion shows. I had a good life. My biggest dream though was to be a wife and mother.
      When I was 21 (2004) about to turn 22, I had headaches that would last for weeks. Finally one evening my dad said come on we are going to the ER. At that point my headache was pushing the end of the 3rd week. At 1st I was told I had trigiminal neuralgia ( please forgive any spelling mistakes, it was never my strong suit). After taking meds that made me stumble and slur I saw the neurologist. Right away he said its not what the told you at the hospital, you have a rare “disease” called Arnold Chiari Malformation. I also met with a neurosurgeon and it was determined that it wasnt bad enough to require surgery at the time. So we treat the symptoms. So my symptoms were really bad headaches, nausea and vomiting, and ringing in the ears. Oh and I forgot balance issues, but really I just thought it was because I was a big girl (have gained weight by this point) and big girls bump into stuff. I would take hydrocodone on occasion for the headaches and zofran for the nausea and vomiting. I worked and continued this way until 2006 when I met Josh my bad boy who later became my bad boy turned good. Of course I would educate my friends on what ACM is and spread the word. So Josh knew about that issue before we dated. After a year of being together he proposed and I being the smart girl I am I said yes. About a year and several medical issues later we brought an amazing little boy home. Six months later Josh and I married. Three months after that I had Brain Surgery. Who knew that my dream in life would be both the most joyful and excruciatingly painful.
      Let me back pedal for a moment. For those who don’t know Arnold Chairi Malformation is where the tonsils of your cerebellum extend down into the spinal cavity farther than its supposed to. In doing that it block the flow of spinal fluid to the brain. It can be no blockage or complete blockage. My tonsils were originally 13mm in length. After giving birth they were 16mm in length. Who knew that could happen? I didn’t, but it probably wouldn’t have changed anything. So after talking to the neurosurgeon about my symptoms being worse, the headaches were worse, I was always angry because of the pain, balance issues, ringing in the ears, nausea and vomiting and now I’m having speech problems, and talking to my job about the fact that I have 1week of FMLA time left and if I have the surgery I will lose my job because I won’t be back within a week, I had the surgery. March 23, 2009 I was 26 years old and had Brain Surgery.
      By July or August I start getting unbearable pain in my left leg. I could not sleep or get comfortable and by this point I’m thinking WTH! I’m emotional because of the lack of sleep and the pain which I just got rid of from my head and now I have leg pain. Also about that time my ob/gyn found early cervical cancer. Luckily that was removed and so far so good. As far as y leg pain, It is now 2013 and I was told I have CPS a little less than two weeks ago. I have seen countless doctors, some who just wrote a script and said we think its you Mildly bulging disk and mild degenerative disk disease, restless leg syndrome, and some that said you are drug seeking. I applied for disability in 2010 and have been denied at almost every turn, the appeals court sent my case back to the judge for a new hearing which I have at the end of the month. I am with a PM &R Dr.now, he’s the one who finally found the problem and we are trying different meds. I have to be careful as meds work funny on me. I can’t take gabapinton because it makes me sleep for 24hrs. And yes I’m still raising my son, so that’s out of the question. Some anti-depressants make the
      restless leg worse. Narcotics help but since I’ve had to take the for the Chiari I have to be on a. High dose for it to work. Today was a really bad day. It was so bad I went to the hospital. What’s worse is the shot of morphine and shot of torodol only brought my pain level down from a 10 to an 8. About a year ago it got so bad and I didn’t have insurance to see pain management I seriously considered ending it. But I have a son a sweet and amazing little boy who I brought into this world. He’s my responsibility, and having a mother who is sick and can’t do much but hug and kiss is better than none at all.
      So that is my story. I wish you all pain free days and hopefully you can find that one thing to hold on to to help you keep fighting. I’m not alone anymore and neither are you.
      Stephanie

    • Michael Martin says:

      I am 44 years old and I’ve lived with CPS for nearly 20 years. I follow CRPS posts on facebook . I work hard to hide my condition, only close family knows the full extent of my problem. This is a very short and simple timeline of my experience with CRPS.

      I injured my back when I was 18 years old. I had my first back surgery 3 years later in August of 1991. The recovery was awful. The surgeon said that because I prolonged surgery there was severe damage to the discs at 3 levels with almost no disc material in place, it was as if they exploded. But- after several months with no sports or physical work I returned to school and finished college.

      I managed to have a few years with minimal pain. I worked for family in a manufacturing business and got married, bought a house. I was granted sponsorship to attend the police academy (for auxiliary police) located in my hometown and the physical drills and exercises in the academy started recurring low back and sciatic pain. I went to my previous surgeon who did every test possible for this type of injury and he determined I needed a minimal invasive procedure to get me back to 90%. After experiencing the long recovery in my first surgery I wanted to have this one done right away and anticipated only a 2 weeks recovery. At 25 years old I had no idea this was the beginning of a long, awful nightmare that all CPS sufferers share.

      With the second surgery I complained of pain, burning pain in places I never had pain. When I would complain to my doctor about arm pain he would say “we are trying to help your lower back, don’t complain about unrelated symptoms”.

      My last surgery was in 1996 and I had had a fusion with rods and screws. My insurance refused to pay for the surgery and we ended up filing for bankruptcy. Since then I’ve seen dozens of doctors all up and down the east coast. if you can think of a therapy I have done it, a medication I’ve taken it, and a side effect I’ve had it. I have experienced on hellacious scenario after another and I can’t imagine what I will see next.

      In 2005 my wife asked for a divorce and I reluctantly agreed. I came to realize that even though I am in pain I am able to do things, more than I thought possible. I was granted partial custody of my children and agree to take then to school, practice, sports. whatever. I do much of this in incredible pain. I warn my kids on a bad pain day so they understand why I have no patience or why I might be grumpy.

      After 20 years experience I deal with this problem better than before. I consider myself a pain expert. At times clothing hurts, sunlight hurts, sitting hurts, moving hurts… it all hurts. But I still need to get out and be productive in some capacity. I work part time for the family business, I am happy with my doctors and I believe they are doing all that is possible for me. I love my kids and will continue to do all I can with and for them. But it ain’t easy.

    • Linda Archambault says:

      I had a stroke December of 2013 and have been getting tests done by our neurologist in Fort Mohave, Arizona. I suffer left side pain, numbness and left back spasms. My legs hurt and feel like they are asleep and waking up most of the time which is very uncomfortable. The stroke started with my lose of smell and from head to toe numbness and pain and my eye sight has been weakened as well. I have had several heart attacks and have a stint in my left side of heart so I take blood thinners as well as Gabapentin and am taking insulin for my diabetes and also have high blood pressure. So much to deal with and trying to get the disability benefits as well.

    • Dawn says:

      I have just been diagnosed with CPS after having major brain surgery 4 months ago for a rare cavernoma (vascular defect). As others have commented, the burning pain with tight nerves and muscles is debilitating. I was an active 56 year old woman with a business, caring for aging parents, husband, grandchildren, dogs, house, etc. Now I’m doing good to make thru each day. I have so far tried 3 meds, but the side effects are horrible, including severe dizziness, weakness of muscles impacting ability to walk and increasing pain, burning and swelling. I have tried many integrative therapies without success to date. It is defiantly depressing thinking about living like this for the rest of my life. Praying for a miracle. Wondering if anyone has tried medicinal cannabis with any success? It will be legal in my state next year.

      • Kitty Mom says:

        Hi Dawn,
        I too developed CPS following surgery of a thalamic (deep brain) cavernous malformation, CM. Like yourself, I once was active, now I function one moment-at-a-time. Have also tried all the ‘usual’ meds, but to no relief. Another CM pt. via a well-organized CM organization said Mindfulness Based Stress reduction and meditation has been beneficial. As for medical marijuana, Neurology Now has an article on this @ http://patients.aan.com/resources/neurologynow/index.cfm?event=home.showArticle&id=ovid.com%3A%2Fbib%2Fovftdb%2F01222928-201410030-00023. Know you’re not alone!

      • Dawn says:

        I realized in reading other stories there is likely a link to autoimmune disease and CPS. I have Celiac Disease and RA, both under control until my brain surgery. My surgeon was so surprised that I developed CPS. Now I think it is likely due to my autimmune response. If only there were research and a way to turn off the autoimmune resonse.

    • Mike Cannel says:

      After 5 years of CPS (or in my case “thalamus pain syndrome” due from a stroke, I have a very helpful doctor who has tried a variety of drugs. The one that (after 3 weeks has almost taken this from a pain of 10 to 2 has been amazing. It is DESIPRAMINE. It is not normally used for blocking pain signals – but it has for me and I can’t believe it. It is an old cheap antidepressant but works with blocking of certain sorts of signals – including pain. I would suggest you all try it. I tried everything else and nothing has come close. It did mess with lowering my blood pressure but it normalized in a couple of months and i am amazingly so much better. Desipramine – i am only on 25mg per day – some can go on 200mg per day. It is worth the chance. Mike

    • Dawn says:

      Has anyone tried Transcranial Magnetic Stimilation for CPS? If so, what were th results?

    • jonathanH says:

      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.

  1. Jess says:

    After suffering sciatica nearly all my life, I had a car accident in 2004 that messed up my neck. Of course I went everywhere, saw everyone, and no one could find a single thing to explain the pain in my shoulder/hand along with weakness in my hand. In 2007, after a pop in my back when moving, I realized I could not pick anything up … I could hold and lower things, but picking up was out of the question. I saw MD’s, tried acupuncture, saw a chiropractor and message therapist. As a last result I went to a back surgeon. He not only diagnosed an old stress fracture, he immediately tuned in on the weakness in my arm (I had forgotten about it and had learned to live with it)! After the 3rd MRI in as many years, he was able to see one slide that showed a slipped disk pushing my spinal cord in my neck! Also, although he was unable to find the exact injury to my lower back, he went in anyway because of my symptoms. He found very unstable vertebra and I have ended up with a total of three spinal fusions.

    Yes the back pain is tolerable. But the burning, numbness, tingling, and sometimes complete lack of use legs due to hip pain is so depressing. No one understands what it is like to lose it all at 37 (when I had my first surgery). I try to find joy in the little gifts this has brought to me (slowing down and enjoying my children more). There are days though that I could slay in bed forever. I look forward for summer when I can swim. But that is the only thing that seems to help. How does one know if they are suffering from CPS, and are there any things that one can do to help with the symptoms? Stretching helps back muscular pain, but aggravates the nerve pain in my hips. I have had radiofrequency burning of my nerves which does seem to help for a short while (3-6 months) but is painful and expensive in and of itself.

    Any advice would be most helpful!

    • bbhomebody says:

      Hi Jess, Thanks for the clear explaination of your medical issues. CPS is often difficult to diagnose. Many CPS patients see doctor after doctor, and some are even accused of being drug seekers before finally getting a diagnosis of CPS. Many doctors have no idea of what CPS is or of its causes. That is part of the reason we created the CPS Foundation. We hope to make CPS a well known illness so that patients can be managed effectively and quickly after CPS onset, because CPS gets worse if it isn’t effectively treated.
      On our website is a page called CPS info for medical professionals. It explains many causes of CPS as well as various treatments and stressors that make pain worse. Patients often try many meds before finding the correct combination that most effectively treats their pain. Although there are medications that help, most CPS patients NEVER GET FULL RELIEF. And so we work to find the combination that gives us the best quality of life. It is rare that anyone gets back to the life they used to have, but with treatment it tends to be better than living in immense pain 24 hours a day 7 days a week.
      Read the Info for Medical Professionals page and if it seems like it fits your symptoms, print it off and take it to your next appointment for your doctor to look at. Perhaps your doctor can make a CPS diagnosis or refer you to a Physician who may know more about it. The page contains a list of many of the meds that help treat the pain of CPS.
      We certainly can’t provide you with any medical advice (as our Medical Disclaimer states), but hopefully this info will get you headed in the right direction if you think you might have CPS. And if you are diagnosed please know that you are in good company and there are MANY young patients out there like you. We have a CPS facebook group that is another great place to get advice and support from patient to patient.
      I appologize for taking so long to reply. Our website is maintained by CPS patients and so it is often physically challenging.
      I hope this info has helped you. Take Care and Thanks for your comment.

  2. karen musick says:

    I’m a central pain patient and an artist I have many paintings I would like to share with you and put my story here on the site .

    I design the logo for the central pain Alliance .

    currently my paintings are being showcased in a very important show put on in conjunction with the University of New England’s neuroscience department at the engine gallery in Biddeford Maine . the show is called ” your brain on pain “.

    I’ve also been asked to speak at their spring symposium to group a future doctors and nurses about life and living in constant central pain

    • bbhomebody says:

      Hi Karen, I’m so glad that you found our website and that you would like to share your art and your patient story. The CPSA Logo that you designed is a perfect vivid image of life with CPS. It is FANTASTIC that your work is now being showcased at the University of New Englands neuroscience department. People with CPS surely know the “Brain on Pain” idea and showing it to others is a great way of explaining it as well.
      When you get a chance please send your story and photos of artwork to our ‘contact’ email address and we will add it to our website. Also, it would be wonderful to add details of your speaking experience from the Spring Symposium. Our website is run primarily by CPS patients, so please don’t fret if it takes us awhile to get your info added or to get responses from us. We hope to eventually have a paid webmaster to help us deal with our web content, but until then, we will do our best to update things as fast as we can.
      THANKS SO MUCH FOR YOUR COMMENT AND WE LOOK FORWARD TO HEARING MORE ABOUT YOU AND YOUR CPS JOURNEY.

  3. Patricia Ruvane says:

    I found you all yesterday while searching for some info to print out for my health care provider. What a great foundation..thank you from the bottom of my heart. i am a C/5 C/6 Incomplete spinal cord injured with CPS post 14 years. It took me years to find out im not alone, finding a great doc and tweeking the proper meds.(just to survive). Ill share more later when im feeling a bit better, for now ill just read everyones story. Patricia Ruvane

  4. Jess says:

    I have lost contact with Lisa Budzinski! Please forward this to her, I value our budding friendship and don’t want to loose it!! Thank you!

  5. Michael Martin says:

    I am going to share an experience that happened two me twice in twenty years and I hope help others do not have the same experience. I am a firm believer that things can always get worse.

    Nearly 20 years ago when my CRPS symptoms started I was prescribed pain medication for relief. Every month the doses were increased as the medications were no longer effective. Several months led to high doses and one day I was in my doctors waiting room and felt like a switch turned on and my entire body was on fire. It is terrifying and unrelenting. Immediately my entire body was on fire, like I was dipped in acid. This lasted for over 4 months. 24 hours a day, 7 days a week for 4 months.

    I only gained improvement when a doctor introduced me to a specific pain reliever. I was pleased by this even though I did not know what the original cause was for the past 4 months of terror. I only knew that this med helped me, although this gave relief- it was relief from hell but was certainly not a cure.

    I went for years not changing any medicines for fear of repeating the episode. But life changes and I tried to change with it. I found myself searching for better pain control and went down that same path to hell that I took 10 years before. When that switched turned on again I knew exactly what I was in for and in crisis and out of desperation I asked my doctors to please go back to the low dose medications that helped when I was first seen by them. They not only refused but wanted me to go 4 months with no medication at all. This was not possible for me, I could not do that. I walked out and I went back to my old primary care doctor that knew my history. With reluctance my primary care agreed to resume to prescribe temporarily. (This began another story I will share on another occasion.)

    This time a family member who is now a pharmacologist named my incredible pain episodes. In treating my CRPS I took large doses of opioids and made my nervous system go haywire. This is called hyperalgesia. I can’t explain the technical definition, but it is awful. These medicines are great for acute pain but not so great for chronic (lifelong) pain. Now that I know what happened I can guarantee it will not happen to me again. I still have burning pain daily, sometimes unbearable. But nothing like what I felt from hyperalgesia.

    For all suffering with pain, be careful, less is more when it comes to medication. Your body adapts and metabolizes it quicker and shortens the amount of relief. As preventative measure every 3 or 4 months I substantially decrease my doses for about a week- only when I am up to it. Never while I am in a pain flare up.

    To get through the pain focus on the good things you have, friends, family, your home. Never lose hope.

  6. Patricia Ruvane says:

    I thought that was happening to me too after 14 yrs but when i detoxed i discovered quite the opposite…i was in burning pain top to bottom. someone here sent a link from a CPS doc out of california that said anaglesia doesn’t affect CPS sufferers. im glad it worked for you…i wish it had worked for me. .can i ask what you detoxed from, how long and what you take now?

  7. Michael Martin says:

    Although I am always on combinations of medications the main medication that triggered the first and second episode was Percocet 10-525, I was up to 15+ tabs a day. When the episode started my doctors tried every opioid available in 2006, oxycontin, ms contin, roxicet, morphine etc.. everything. When I took them there was absolutely no change in pain level, it remained the highest pain I ever experienced. At that time my doctors changed my meds every week, then every other day. Also I tried every neuropothy pain medication topomax, lamictal, elavil, Cymbalta etc.and meds to treat the side effects from meds. Because no-one recognized hyperalgesia it was noted I had a reaction to percocet, but this is not entirely true.

    When I got back on the medication that helped it was not instant relief. I got a little better and a little better every week. until my pain got back to my “normal” levels, it was a very slow process.

    I am always hesitant to name this medication because of the stigma attached to it. This med was first introduced to me when I was 25. I told my doctor I was not eager to try it and he said think of it this way, if you have diabetes you need to take insulin, you have neuropathic pain and you need to take this. I may not have worded this correctly but it made sense to me.

    The pain medication I take is methadone. My uncle was a paraplegic from a car accident on the day he passed the bar. He went on to become the vice president of Chub Life Insurance. After he died I found out he also was on methadone for his pain. I share this because he was able to function better using this pain reliever. There is no euphoria and the pain relief lasts longer. It does not make the pain go away, but it lowers it to a more manageable level. I also take Lyrica, Neurontin, and meds for sleep and anxiety.

    Before and after the hyperalgesia episode the burning is mostly in my legs, on tough days legs and arms and on worst days I have legs arms and face. During the hyperalgesia episode it was my entire body, everywhere and the pain was through the roof.

    The purpose of this posting was to make others aware that opioids in large doses can cause pain. If I had not experienced this I may not believe it, and it had to happen to me twice for me to see what was happening (along with a doctor that gave it a name and definition). Although methadone helps me I would not say this is the best medicine for you or other readers, the recommendation should be made by your doctor.

    I hope this was somewhat helpful.

  8. Dion says:

    I’m a female 14-yr long stroke survivor & CPS sufferer! I’ve found that Medical Marijuana works the very best. I need to find a roommate in a 420-friendly state; there are about 20, but I was forced to move from one (WA) to TX where I can’t get it. I’m essentially homeless & desperate to go anywhere with MMJ clinics! Any help out there? We ARE in the same boat and truly could help each other: I’m an old fighter who doesn’t give up without a fight. We could be in each others corner- We are not alone, you know. Please, I’m desperate- as most of you know, it is just not possible to “live” without our meds. Pain management is the most important thing to me right now; I know most of you understand that! Help, please…together we just might make it!

  9. Jeff says:

    How do I get added to the list of suffers and supports.
    Thanks,
    Jeff Guy

  10. Leslie sivek says:

    My name is Leslie and I am a 19 year old suffering from CPS. I would like to get my story on here I hopes of spreading awareness and gaining helpful advice about the condition. I am a 5 year warrior and I think being 19 can help the younger sufferers have someone to relate too.

  11. Sandy Kamaka says:

    Hi Everyone! I would like to add my life’s trials and tribulations in dealing with CPS. To give hope and to stay alive to fight the fight is what I hope to achieve to everyone who reads it.

  12. Jeff says:

    There is some real truth to the old saying, “use it or lose it”. Some of the most informed doctors in Boston told me to use my left arm, the arm that is feeling the 24/7 pain, and use it vigorously. You see, the signals which are being transmitted to my brain are the result of the plasticity of select nerve fibers to take on the pain signals of other neighboring neurons which are sending the “wrong” signals to my brain. In other words, the pain alarm is stuck on, ON. Their appears to be no testable reason for my being in pain, yet pain signals continue to be sent. It took me some time to wrap my understanding around this concept but I now believe it is a fact. There does not appear to be a pinched nerve or cervical malformation. My case is a long story, if anyone wants to hear it let me know and I will post it on this site.
    Jeff

  13. Sorry my child s log on yes jeff i want to know my right arm has similiar problem sometimes to looosen it up i use the other arm to strech it and move it around as much as i can . Last night used heating pad on shoulder it seems to feel a litle better.

  14. I would like to be included as part of the group

  15. Patti says:

    I am soooo pleased my story was published in Nat’l Stroke Assoc “Faces of Stroke” – hooray to more awareness!!!
    http://www.stroke.org/site/News2?news_iv_ctrl=-1&id=17759

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  17. Karin says:

    Help! I can’t seem to find a place where I can listen and share issues that arise from having CPS. It hurts to type for me, and I was wondering what is available to have open supportive people that KNOW all the frustrations and challenging pain symptoms . I too like John have lost my home, family, and many non friends that slowly fell away. I NEED a CPS framily that can help and also be helped by me hopefully:)

  18. Karin says:

    Hi I’ve been tryin to find a smaller type group that has real people with CPS.

  19. Jim Ferrone says:

    There are a couple of Facebook groups that I like for this purpose…try https://www.facebook.com/groups/546117792144853/?ref=br_tf You may need to click a request access button since it is a closed group, but they’ve been pretty good to me. If typing hurts, I wonder if there is a good speech-to-text program…I have some apps on my phone that are good for that purpose (and free), I imagine there would be some desktop programs as well…

  20. Geoff Masters says:

    Hi Jim,

    There is a good speak to type app included in the Windows 8 program. I have used it, but only sparingly as I wish to keep doing the manual typing as long as I possibly can. What I found with it though is that it takes awhile for this app to really learn your speech traits, but you only have to correct it once and it has it in memory. Just like your spell checker learns by you adding a word to it’s memory.

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  22. mcmnrmMike says:

    My name is Mike – have severe thalamic pain for 4 years.For me, it is the right side in constant pain, always with a burning sensation and am also supersensitive to touch. I have often thought of not going on and like, probably many of you, are hanging in there not for yourself but for your family. The only thing that gives me some relief is Hydrocodone (4 pills a day). Normally that is all I need but lately (for some reason) the electrical spike to my right side is just unbelievable. I live in Orlando. Anybody who knows anyone in Central Florida who could help me would be wonderful. I am 61 this Sunday and have been very successful in business and in my personal life – but for the last 4 years my whole life just got turned upside down and it is really difficult to even want to be sociable as I don’t want anyone else to know what is going on. Life sure is crazy and sure wish I could just have a pain free existence. I’ve tried meditation, anti-depressants, and pain specialist psychologists – but nothing binds the pain outside of hydrodone – hard to believe what it comes down to.

    If you have any thoughts, please provide them.
    Mike at mcmrnm@gmail.com

  23. Jess says:

    Mike, have you tried any meds like Lyrica or Nuerotin? Those are great for the type of pain you are describing. I’ve had three fusions on my spine. The last one resulted in bone spurs growing on my L5 R nerve exiting my spine. Considering a nuerostimulator at the present time. Living with chronic pain since 2007 has become intolerable. With 4 kids, and a husband who bailed when I could no longer be the “perfect wife”, I too live for my family. But, have now found that I too can still contribute to life, through them.

  24. mcmnrm says:

    Thanks for the suggestion. For some reason Lyrica and nuerotin had no impact. The only thing that helped was desipramine but it caused my blood pressure to go down so much i.e. 90 over 40, and it became dangerous. The MD never saw that reaction to desipramine, but it did help while on it. I am thinking about a morphine pump so if you or anyone else knows anything about this (practically) let me know. I have a very high pain tolerance, but CPS has buckled me at the knees. Thanks for your response. Mike

    • wally1944 says:

      mcmnrm,

      If possible stay away from Morphine, I was on Morphine for 8 years, and believe me it does more harm than good. The side effects are horrendous and you are in a constant state of dribbling lethargy with chronic diarrhea. On top of that I was put on Neurontin with a dose that reached 4,800 mg per day. All that did was give me excess weight, so much that my body ended up nearly twice the size it was when I started.
      When I did get of both I lost a fair bit of the weight, but nowhere near enough to get back to normal.

      A rehabilitation specialist weened me off them & then started me on Methadone at a low dose to start, but quickly pushed it up to 40 mg 3 x 8hour doses per day. It does not do much for my pain but it does take the peaks out of it, which is better than nothing. When I am just sitting in my armchair I use a heat-pad on the worst area at that time and it does give relief.

      Try everything you think may help, if it does well & good, if not try something else. We are all different in this horrendous complaint what works for some may or may not work for you, so as I said, try everything you can think of.

      wally1944

  25. Christal B says:

    I’m 36 and have had CPS since 33 when my spinal cord collapsed and they had to fuse C3-c7 cervical spine I just wanna be involved and to relate to someone that lives in agony like I do

    • Kitty Mom says:

      Common sense tells me constant pain has to affect my body, mind & soul, yet it’s good to have scientists affirm some of what we already know & to learn more about the damage our pain causes.

  26. Thanks for your marvelous posting! I truly enjoyed reading it, you can be a great author.I
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  27. Dawn says:

    Thanks for sharing. This is the only support I have found for CPS. I developed CPS after Brain surgery to remove a cavernoma. I just completed an intensive chronic pain clinic. It was somewhat helpful, but everyone else was there for back pain or migraines. I have not found any medications I can tolerate so learning to lIve with th constant burning and tightness from head to toe. I just read about transdermal magnet therapy. This sounds like a better experiment than deep brain stimulation surgery. Has anyone tried the magnet therapy?

  28. Kitty Mom says:

    Hi Dawn, I too developed CPS post-op of a thalamic cavernous malformation (AKA cavernoma, cavernous angioma). Glad the pain clinic somewhat helped you. A rural pain clinic I went to was clueless re: CPS, so I never explored it further. I’ve also consulted w/ renown university neuros & pain specialists & presently they have nothing to offer, so just carry on as best as I can.

  29. Kris says:

    A lady from Adrc found this site for me. I think it has been about 6 and half years. On one Sunday I had a stroke. The next Sunday My brain started bleeding causing more stokes. Stories to long to tell but after thinking WOW I made it one day the most intense pain on my entire left side. From my head to my baby toe. Yup Cps at one point 22 meds lot’s of trips to the ER all of the making me sick even split my tongue open, Nothing took or does take away the pain they even talk about doing that surgery to cut the nerves in my head but I live in Oregon and they didn’t know if they could find a surgeon. After trying all kinds of meds Doctor put me on clonazepam 4 times a day no it doesn’t take away the pain but it does take the edge of so I can live. If you live on SSDI or SSI they don’t want to cover it but you can fight it buy showing all the meds you have tried. Yes My TBI is getting worse and I have some really painful days and I think I’m just now starting to accept that other people just aren’t going to get it, People often don’t understand what they can not see. Thank you for this site

  30. Kitty Mom says:

    Here are many opportunities in 2015 to share your story, bring awareness, write the media or your state representatives re: how CPS has impacted your lives…

    http://rarediseaseday.us/ &
    http://www.rarediseaseday.org/article/about-rare-disease-day.

    Until CPS is recognized as NOT being a ‘rare’ disease, events like this are essential for ‘us’ to be heard…

    Happy advocating! :)

  31. Patti says:

    I’m thrilled to have my story published!
    I feel that the more stories shared will increase awareness of the agonizing pain we cope w/ moment-by-moment..
    http://www.rarediseaseday.org/stories/3139

  32. Patti says:

    Has anyone tried gamma aminobutyric acid, GABA supplement w/ noticeable relief for our symptoms, as well as for calming effects?
    I already take Taurine & Carnitine as suggested per Dr. Tennant’s pain mgmt. site http://www.foresttennant.com/index.html.

  33. Kitty Mom says:

    Stanford Researchers Seek Pain Patients for Survey‚ÄŹ

    The survey takes 15 – 30 min.
    http://nationalpainreport.com/stanford-researchers-seek-pain-patients-for-survey-8825555.html

  34. wonky donkey uk says:

    Havent seen any 2015 posts where are you? Still fighting cps 2015

  35. Jo Ann Koepke says:

    I am so glad I found this page. I have central pain syndrome for so long I am totally wore out from the pain. Now the doctor I have is taking me off the one medicine that has helped. Extended release Morphine. My family-except for my Mother who passed away Jan. 2013–does not care enough to understand. And I have begun to realize that I may only have about2 friends who care if I am alive. I am depressed as all get out. I am 67 years and the pain began when I was age 12. It was reasonable manageable until I had head traums and develoiped lupus and epilepsy. In 2007 I got hit by a speeding pick up truck –the driver thought I was in her way-I was not but she just did not think persons in wheelchairs should be part of society so she almost killed me. In 2009 I had a brain aneurysm surgery. Since the pickup truck and the aneurysm surgery my pain has gotten so severe I do feel like just giving up. I moved back home to where I grew up about 7 months before my Mother died. And when I first saw my doctor I thought I had someone who truly cared about me. But I found out that his idea is that if I can’t be cured I do not really deserve to live. That latter has just happened sinc Jan. 1. I am trying to find out if I can move to where one of the doctors that treats cps–but it will take me a long time to save up for that money., anyway I understand what all of you are going through. Jo Ann

  36. Anonymous says:

    Hi Jo Ann,
    You are far better off being off Morphine, it’s known as a dirty drug because of the side-effects it leaves you with.
    I was on it for 8 years and it had me thinking suicide all the time, as well as just being a drooling idiot who had trouble doing anything for myself.. Thankfully a new doctor weened me off that & Neurontin on my first visit and gave me Methadone. It doesn’t get rid of my pain but it stops the high peaks and makes it a bit easier to live with.
    Like you, I have had this problem since childhood, and believe it or not, having it for that long it does make your life a lot less traumatic simply because your body & mind has figured out how to handle the pain. I find that when it gets to the unbearable stage I go to sleep and get through the worst of it that way. Sleep is a great smoother of nerve pain, it’s better than any drug, especially with a heat pad or hot water bottle.

    Take Care
    Geoff

  37. Jo Ann Koepke says:

    Geof, Morphine helps me because I also have lupus and other autoimmune problems. Morphine is the one that works for me because it is an immune suppresant. This is just a difference in people’s whole needs. I do not have many side effects from it. I do not drool. I do not get suicidal from it. I do not even get groggy. My problem here is that my doctor wants to cut me off all pain meds because he is not taking serious how much pain I am in. That is different from getting a change of medicine. Take care too Jo Ann

  38. kitty mom says:

    I’m so happy to see this very interesting thalamus & revised CPS article in the current Stroke Connection issue! :)
    http://scmag-digi.strokeassociation.org/strokeconnection/spring_2015#pg24

  39. Dawn says:

    I am sorry you have joined our ranks. You are not crazy and you are not alone. There are very few doctors that understand and even if they do, they do not have many suggestions. I would be happy to share what I am doing and my docs in the Minneapolis, MN area if you like. What city/state are you from?

  40. http://thecheeduhsden.blogspot.com/

    I have attached a link to a blog I started which goes over my story. I am not a social junkie by any means but I would like to share my story and hopefully help raise awareness and possibly help others. If anyone needs someone to talk to or has any questions I understand the need to talk sometimes. I am desperately trying to find a doctor who has a sympathetic ear and an understanding of CPS and who is not just afraid to prescribe pain medications or throwing darts at what they think this is. I am a big muscular guy, or was, with a very high tolerance for pain or so I thought. I survived basic training, but nothing compares to this unforgiving cancer of pain that is inflicted upon the body on a daily basis. I am here if you need me community.

  41. Kimberly Cook says:

    I would like to share my story. But right now there is a CRISIS with us being able to be treated. I tried to move to another state to be near a friend, and was discharged from my proviider. The laws in different states are getting so people with our condition can not even be treated. I had to come back to Ohio because of my health. But my provider would not take me back. And I can not find another provider who will treat CPS. The laws are so strict, doctors are scared to treat patients with real, proven horrific pain conditions. I can’t take antidepressants, anticonvulsants in the amount needed for pain help due to Long QT Syndrome (a deadly heart condition due to these meds affecting the QT interval in the heart). I’ve been able to function pretty well with pain meds for 8 years, and have used less and less as years have gone by. Though I’ve sought relentlessly for any ways to heal or treat naturally, alternatively, etc., to no avail. But without the pain meds, I’m just literally being tortured, where it feels like I’m in a prison camp, with several people using different ungodly instruments on me. I have CPS all over my body, so my entire nervous system feels like it’s been electrocuted and set on fire; my bones feel like they’re being filed; joints feel like they’re being burned with a soldering iron; muscles feel like being put through a meat grinder; skin feels like numerous cats are clawing all over in different directions; even eyes, gums, etc. hurt. It can also feel like I’m being stuck with pins all over and being stabbed in different places, as well as many other horrific sensations.

    If I can not find treatment, after all this time of trying so hard to find treatment, spending everything I have trying alternative methods, etc., I will be forced to end my “life” (barren, hellish existence).

    But until then, I’m doing what I can to write about this condition and let the public know what’s going on. I refuse to have to die without trying to make things better for others. No one should ever have to go through this. If law makers and doctors had to go through this for one day, they’d be ready to die. What’s the best way for me to address this? Can we band together to go to those who can affect change? Can WE affect change?

    Honestly, I’ve seen that instead of a war against drugs, it’s been a war against actual suffering pain patients, Now they just want to experiment on people doing ridiculously expensive procedures, which I’ve seen people end up horribly worse. Some people have even ended up with CPS from the damages from procedures and surgeries gone wrong. It’s all a big money-making scheme. And doctors who are actually sympathetic and want to treat us in ways that have been working are afraid to prescribe meds for fear of being punished, put in jail, and/or losing their licenses. I’ve had numerous experiences with all kinds of doctors which would be shocking to people. So, I’m just going to write a tell-all book and end my life if no help or miracle occurs. Spirituality with the belief I was meant to make it through all this and then be able to help others is the only thing that’s kept me going through some of the most unbelievable atrocities and relentless torture. But one’s body, mind, and spirit can only take so much.

    PLEASE tell me what is the best way to address this for the sake of everyone, and if there’s anything I can do to save my own “life”.

    Thank you.

  42. I have Central Pain Syndrome in both my legs but not my feet. I live in constant pain and because of the new Pain Medication Law in Washington State, no more than 120mgs a day of pain meds, I have no life what so ever. I have had this horrible syndrome for almost 14 years

  43. kitty mom says:

    How we need to be heard! & here’s an opportunity to share your story.
    http://nationalpainreport.com/pain-community-tell-us-your-story-8827074.html

  44. Justin Moore says:

    I currently go to pain management. I live in Maine and I am 32 years old. I have central pain syndrome from a motorcycle accident. I was curious if anyone knew the closest place I can go to get a morphine pump installed. Neurosurgeon, whatever my pain management doctor, my primary care doctor, and my Shrink all agree that it would be a good idea for me to get this procedure done. but I can’t seem to find a doctor in Maine that will perform the surgery once I do find one my primary care will put the referral in for me if anyone can help with that it would be much appreciated thank you. Feel free to ask me anything your website is great!

    • Dawn says:

      I have found that pain medication Is not as helpful for CPS as neuro PT, pain counseling, very mild excercise with stretching and medicinal canibas. You may have already done this, but if not, please read about the long term use of morphine.

      • Justin Moore says:

        Thanks Dawn and yes I’ve tried em all. Gabbapentin lyrica cymbalta etc etc… Unfortunately methadone is the only medicine that “QUIETS” the pain. My condition is complete right side hyperanalgesic( I think that is the word) from top of head down to the bottom of my feet. Including my genatals making sex painful. (Motorcycle accident, no helmet, had brain hemorrhage had craniotimy, so I got it from either the accident or the surgery) anyways I think a pump with methadone in it would be my best bet but I need to find a surgeon in or around Maine to do it but it seems hard.

  45. kitty mom says:

    Anyone have success on Tegretol???
    Only on it for 1 1/2 wks and it’s increasing the burn and prickling. :(
    Just want to scream it’s so bad!

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