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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.


90 Comments

  1. Kris says:

    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

    • Wallyone says:

      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.

  2. tom says:

    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. Lucy says:

    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😛

  4. Ellie says:

    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. Carl C. says:

    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.

  6. Dawn Swanson says:

    Has anyone tried hypnosis for CPS?

    • heidi says:

      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.

      • Dawn says:

        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.

  7. Mary Duerksen says:

    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.

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