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.

107 thoughts on “CPS Sufferers and Supporters”

  1. I have lived with central part syrdoom for 8 years. They still can’t find a med to help with the pain. Doesn’t seem like they really are looking

    1. MY cps has been a 30 year engagement, and I have tried every drug you could think of to alleviate this rotten condition.
      The best result I’ve had is with what I have used for the last 8 years, that being Methadone.
      I get it under the name of PHYSEPTONE, and I take 40 mg 3 times a day (every 8 hours) gives me the best result in relief.

      1. New research on CPS in rats has been done. Go to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627563/. The drug is ZARONTIN. Has anyone used it. It looks like it could be our answer it is genuine new science folks we may be out of agony !!!!
        Best wishes to all my fellow sufferers. I am trying to get my doctor to prescribe it without the human trials when you are this suicidal really who cares.
        Best regards
        Don

    2. The rat model I mentioned below is a university white paper (Michigan u) they have found the cause of CPS and a readily available drug that fixes it. Why is no one excited. Maybe your not in as much agony as me. I start the drug today it was instantaneous in the rats. I can’t wait to get it.
      go to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627563/ and read it. ZARONTIN is used for epilepsy in children and is safe.it is a calcium blocker and turns of the bursting in our damaged CNS AND THEREFORE THE BRAIN NO LONGER PERCIVES OUR AGONY. DON’T DO ANYTHING ELSE JUST YET. THIS DRUG IS RELATIVELY HARMLESS, EVEN PREGNANT WOMEN CAN TAKE IT.
      BEST REGARDS
      DON Beddome

      1. Have you tried this drug? I’m going on 3 yrs with no relief. My pain is getting worse and I feel like I am losing my battle. I’d like to find out more.
        Thank you.

      2. Nancy I have been trying this drug. It is ethosuxomide marketed in Australia, where I live, as ZARONTIN. It is a fairly strong acid so regular blood tests are required. It has completely stopped the bursting , (that horrible electrical pulse in the brain we experience) but so far this has NOT translated to reduction in pain or clamping. I have attempted to email the author of the article 3 times for results from a human trial. It is hard to say if my trial dose is too high or low. It is lovely not to have that shocking head spinning bursting but like you what I want to get rid of is the suicidal pain. What time frame or dosage is required to do that I don’t know as the data is about rats. I will keep plugging. The only side effect so far is gout (like some people get from red wine) due to the strong acid I guess. Keep your chin up at least it has been recognized now and someone is finally doing some research! My neurologist had never heard of the research and read it when I sent him the link. He said it was fascinating and might just work. Great obviously he ain’t in this much pain eh! Send the link to whoevere is treating you the more of us making noise about this bloody thing needing research the better.
        All the best from down under
        Don Beddome.

    3. I have just started on ZARONTIN following the research I cited earlier. My left hand is clawed shut and extremely painful to open. The left side of my face is so clamped it glows red while the right side is normal. BOTH RELAXED considerably within half an hour of the first tablet. The effect lasted about four hours. I am weaning on and on a very low dosage so far. It was lovely to open my left hand without feeling as if the skin on my palm will burst. Keep you posted.

  2. I have been suffering from CPS for about 5 years now ( Post stroke). Feels like I dipped my hand and foot in a deep fryer. No joke. I do get some relief from opiates but they play hell with my body functions. I don’t know what to do, the pain consumes my life.
    thanks for listening.

  3. Hello,

    I’m 16, I was a runner and I have had from CPS since 2012. I did my first race at age 3 and continued most of my childhood. I got into intense training 6 days a week by about 9 or 10. My coach was very cautious, however I damaged and teared my stomach muscles a few times.

    For the past 4 years since my ability to exercise deteriorated with this pain (like an super-intense, ripping-muscle, stitch anywhere in my abdomen). Now I can even get it sitting down or getting into a car. I anticipate what the future brings! My ultimate goal in life is to be the next Paula Radcliffe but I can’t even walk without wanting to scream. I have seen 101 people over the last four years and finally was sent to a pain team who said I had CPS. I’ve been on amitryptline (I hated) and now sertraline for high anxiety/OCD behaviours accompanied with therapy. I want to run and think about it everyday. I will do anything to do it again, I am willing to face the excruciating pain. My brother is suicidal (BPD, OCD, anxiety) and my dad works overseas and my mum is trying to keep everyone safe whilst study. Running has always been my self-medication from stress. Recently I have resorted to cutting my hand which I know is real bad but I can’t find another way to calm or bring me into the moment. (Sorry I am very open! I am usually an internaliser).
    Do you know if my pain will get worse or do any damage if I run through it?

    Best wishes to all else with pain, hang in there (sorry to be cliche…) what doesn’t kill you makes you stronger! Idk if it’ll help anyone else out there but try listening to your favourite motivational music when you get your pain. A lot of famous singers suffer from mental illness and you’ll find a lot of songs have hidden meanings and inspiration to all those suffering physically or emotionally. Remember you are not weak but strong and thriving- you can handle anything 😛

    1. It all is very dependant on the individual as many of us have very different cases about how it feels or where. However what I would say is yes you will feel it worse after you exercise but if you can find an “acceptable” level that you are willing to go to if it means being able to run, as long as you don’t have any physical conditions that could get worse, it’s really up to you about how much pain you can handle. I have a very similar outlook on handling stuff, just a different sport. I played hockey for my whole life and almost went pro before the concussion that started my symptoms. I also played football, baseball, and did MMA, I’d riverside and weight lift on the side and exercise became a big part (the only part for a long time) of handling stress or dealing with my problems. I had a rough home life growing up so it was never okay to talk about my feelings or be upset about things, so I learned to work it out on the punching bag or on the ice. I’ve been working on my emotional issues from that stuff and noticed the improvement overall when I don’t let it weigh me down. When my symptoms got to the point where I could really no longer do any kind of physical activity, I went into a deep depression. I had no outlet for working through what I was dealing with and went 8 years and probably a hundred doctors at 30 different places in multiple different specialties that couldn’t give me a diagnoses or a treatment that helped in the slightest. My pain is primarily spine pain that spans from the sacrum to the cervical vertebrae that feels like I’ve been stabbed with a dozen hot knives and someone’s twisting them every couple seconds. It also causes my ribs to ache and burn and my shoulders and knees often get this tearing pain that they assume is the result of past injuries been felt worse than before. My arms, legs and hands are weak(er) and sometimes I get tremors in my hands or spasms all over. The psychological effects and side effects of medications are just as bad as the pain, constant intestinal trouble, bleeding, and a hostel hernia combined with all the pain cause me to just feel nauseous and gross. I was barely eating for a few years, bout once a day or once every two days, and put on a ton of weight because my metabolism dropped to nothing. I’ve since gotten on supplements that boost my metabolism and hormone treatments because the opiates messed that up too, and lost nearly all of the weight. I still have severe trouble with the pain and most other symptoms including some new ones after 25+ different opiates, NSAIDs, antidepressants, seizure meds, muscle relaxers, Ect, and probably 10-15 different less significant procedures and surgery to implant n electrical neurostimulator in my spine and hip (which doesn’t offer much relief). But being only 24 (this started at 16), I need to get control of my life and try to do something that makes life worth living. I lost my chance to play pro hockey, and couldn’t make it through basic for the Army Rangers because of this disease but I am attempting to finish school and become a veterinarian I hope, and am coaching hockey when I can. There have been a lot of times, especially this year that I missed practices and even when I’m there I can do it nearly what I could but I will say it is very cathartic doing something you love, and getting back that small part of what I had has been a huge help to me mentally most of the time. I got a gym membership to basically do physical therapy since a month costs less than 1 visit to PT, but even though I know what I’m doing and should know better about my limitations, I have a very bad tendency to overdo it when I’m in a good mood and enjoying being able to do some of that again. Even if I don’t overdo it, I feel worse the next couple days but when I do it can be a week or two, and I’ve ended up hospitalized because of it before. This is an extremely long explanation/answer to your question but I wanted you to know I definitely know where you’re coming from and have had some experience with what you’re asking. The short answer is you learn your limits and can try to build from there, but sometimes it means deciding how much pain you’re willing to put up with. I apologize for the length but I hope this helps and I wish you the best of luck and hope hope you feel as good as you can!
      -Justin

  4. This type of pain makes people wish they were dead. in bed since 2009 due to hyponatremic encephalopathy & TBI from fainting & hitting my head multiple times when My brain was swollen from low sodium during this whole incident. I can’t take it anymore.

  5. It’s been a 19 year nightmare of pain. No one believes I have the crushing, burning pain that comes on quickly, but without schedule. It started
    After a “thalamic” stroke in March 1998. I’ve been through UCSF trials of remefentl, had pins in my scalp and ears, have done Chinese herbal therapies,
    seen shrinks, been in group therapy, taken “lamotrigene” (worst exp.); contemplated the worst ways to end it, but not a thing helps relieve it but time.
    It recurs so often I feel cursed. Of course I live with depression. I’ve had diabetes since 1967 and that undoubtedly caused my stroke… But I get
    To the point I am desperate, without hope of relief. Have been taking clonazapem since 2000 for brief relief…but surely something is out there besides
    Gabapentin by now? Please reassure me there is something besides death that will cure this.

    1. Carl, by chance have you tried Tramadol along with the Gabapentin? I too had a thalamic ischaemic stroke on 12/18/15 on the CPS started in April of 2016. It was pretty much a daily debilatating pain until my new PCP started me on the Tramadol. Then the daily pain reduced to about a 5-6 and the pain flares occur about every 2 weeks. They were lasting 3-4 days, until this past one. Dr. had increased daily Tramadol & during flare I took 2 extra Tramadol & flare only lasted 1 day and was not nearly as intense as they have previously been.

    1. im a certified hypnotherapist . My daughter has a high CPS syndrome. I cannot get her out of pain. I can bring her to the “room of the pain” and have her ask it what can help her. She said it said,”Death or acupuncture. It seems to help but not during an attack. Tram idol has worked but its causing life threatening side effects.

      1. Thanks for the insight. The only thing I have found to help a little without terrible side effects is medicinal marijuanna. I am being considered for a cortical implant at Mayo, but that’s pretty scary.

    2. Dawn…please reconsider having the cortical implant. I inquired about that as well and was told there is a high risk of infection around the wound in the skull, and NO guarantee it would even work. I’ve been dealing with CPS for almost 9 years now and there has been very little that has helped. Not moving around helps…standing at my kitchen sink running hot water over my hands distracts me from the pain and Oxycodon helps the pain in my back and neck. My pain is mainly on my left side, from the tip of my hand up to my shoulder, and down my left side front to back. It causes painful back and neck aches and the Oxy helps that…nothing helps the pain in my arm though. But mainly, please reconsider having this surgery done…I know how you feel, I would just hate to see it made worse by the surgery. Best Regards, Stephen

      1. I am only thinking about cortical stimulators at this point. Mayo has approved me. They have done 100 cortical implants for CPS with 1/3 successful, 1/3 somewhat successful and 1/3 didn’t work. Having another brain surgery is scary, particularly when they leave the skull open for the week while they test which areas to put the implants on and then a second surgery for the actual implant. I would rather try Transcranial Magnetic Stimulation, but haven’t found anyone in Minneapolis that will do it for pain. Mayo will, but that’s 3 weeks in Rochester and not sure if insurance would pay for it.
        Oxy makes me hyper and sick to my stomach. I haven’t found a drug I can tolerate, except medical Marijuana that helps me sleep and takes the edge off my pain which is head to toe on the right side. Thankfully the price is coming down on that here.
        Thanks for the input.
        Be blessed and be well.
        Dawn

  6. I am recently diagnosed with CPS as a comorbidity along with Psoriatic Arthritis and Inflammatory bowel disease. My rheumatologist is involved with some European studies which seem to indicate a higher than expected correlation between CPS and Psoriatic Arthritis. Not for the faint of heart! I am currently working with a Therapist using EMDR (Eye movement desensitization and reprocessing, to see whether it will help me manage symptoms. I am reluctant to be on more meds if I can help it. Willing to talk to anyone else or offer support. I also had traumatic thoracic spine surgery in 2012 which may be related.

  7. I too had a thalmic stroke 4 years ago. Lyrica and Duloxetine keep my CPS symptoms at a level where I can live a normal life. I tried acupuncture with no results. My heart goes out to all of you who are suffering from CPS. Does anyone ever get over it?

  8. Hi, I am using John Pepper’s method for reversing Parkinson’s disease for my CPS which involves exercise to increase GDNF in the brain. Look up GDNF. Walking on my left leg is agony but I am hoping it will improve! I will let you know how I go.

  9. Well…I will hope, and even though I’m not religious, I will pray for as well that you come out of that surgery in one piece and it works for you. I’ll be watching and waiting to hear about how things went. I had inquired about this, but the surgeon I spoke with didn’t seem that knowledgeable or sure of himself…so I just bowed out of that…just the thought of it getting any worse was not something I wanted.

    1. I have not committed to the surgery. I am praying about it and will not go forward unless I have peace about it. At this point, I do not have peace so it’s on hold.

      1. My pain is head to toe on my right side also. It started out less intense but has been getting worse. Medical marijuana was suggested by a friend. How much pain reduction have you had from it?
        Thank you.
        Nancy

      2. The medical marijuana takes the edge off a bit, most importantly helps me sleep. I used to sleep 2-3 hours a night and now it’s 6-7. The type I take is a combination of CBD and THC. The
        CBD offsets the “high”. The CBD is the only I take for seizures, but I might not have seizures now that I’m a couple years post op.

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