Meet the People of the CPS Foundation

CPS Foundation Board Members:

CPS Foundation Supporters:

  • Mandy Dumins, Graphic Artist

58 thoughts on “Meet the People of the CPS Foundation”

  1. Looking for ideas!!!!!!!!!!!!!

    My CPS started a little over a year ago. Here is the list of pain I go through on a daily basis:

    -Skin burning – from my head to my feet (average day is a very bad sun burn – bad day is roasting in a oven)
    -Electric shocks – from what feels like 120v to being hit with a stun gun
    -Spams – from my neck to my calves ( also have hemifacial spasms, they don’t hurt until after they stop. Then it feels like being kicked in the face by a horse)
    -Joint pain – That’s the wonderful knife being stabbed in to each joint
    -Bone pain – feels like my bones are being crushed (the pressure builds and builds)
    -Freezing – my feet start freezing which makes them burn and spasm
    -Nerve pain – I can feel each nerve coming out of my spine as they turn to fire (those days I can’t be touched or touch anything because of the pain levels)
    -Feet pain – besides my feet burning, every step I take is like walking on broken feet

    Now the reason I need help and ideas:

    -Temp change cause pain
    cold causes spams
    heat causes burning
    -Now I have a drug sensitivity
    Can’t take anything with the word anti attached to it. It either makes my pain and burning 100x worse or it puts my in anaphylactic shock.
    -Drugs I can take
    Muscle relaxers (I’m on as much Baclofen and Flexarel as they will give me) everything else will knocks me out
    Narcotics – Butrans patch 10mcg on bad weeks, 15mcg on hard weeks, 20mcg on tough weeks
    And I do use marijuana (I live in Georgia and it isn’t legal yet)
    -My Doctors don’t want to put in a pump for either Baclofen or Morphine. They don’t think it will do me any good. I don’t want to be in a drug coma the rest of my life.
    -Trigger point injection, dry needling, nerve blocks, epidurals, acupuncture, chiropractics, massage, have all been tried and nothing lasts for more than 10-15 minutes.

    I do meditate when things get really bad. But for the most part I just keep my mind focused on my work and kids. That helps on the bad and hard days. Nothing works on the tough days.

    If anyone has any Ideas or even doctors I can go see PLEASE HELP. I know I’ve only been at this for a year, but the pain grows worse by the week.
    Thank you,

    1. Dr Forest Tennant in West Covina, Californinia. He has helped me immensely with Hormone assessments to combat the centralization to the brain. Look up his website. He does research and has for over 40 years specifically for pain.

  2. I am newly diagnosed and looking for other people to talk to about this issue. It has been a 15 year journey to get a diagnosis.

    1. I just want to say you must have amazing strength to go 15 years with this battle. Im on month 4 and im already fraying at the edges. Dont give up!

  3. I’m really glad that you guys have kept this going. I felt (& feel) really bad for having to stop helping out with this project. Between my health, losing my mother-in-law (while w lived in her home, which we also lost), and fighting CYS (child services; who believes that disabled parents and/or parents of opioids can’t care for their kids- thankfully the “parent educator” was more concerned with accurate assessment of our abilities than maximizing her profit and we got a fair judge, our case is actually responsible for major changes in our county regarding how they handle all cases, but especially cases regarding disabled parents). I finally have an intrathecal pump and my quality of life is really improving. The CPSF website has really helped to get providers (doctors, physician’s assistants, nurse practitioners, and nurses) to acknowledge CPS. Please keep up the good work.

  4. Please…anyone who has any ideas please feel free to say so. No ideas is silly or dumb. I need help. I have been dealing with these same symptoms for months now (not nearly as long as most but still…) My doctors cannot find the cause so they are now telling me its in my head and i just have anxiety. They will not even prescribe steroids to help. I am in so much pain i am now confined to a wheelchair. I am 27 and was running marathons 6 months ago! I am at the end of my tolerance. I dont know what to do. I know there are ones who have been where i am..please help. How did you deal with the doctors? What finally led to a diagnosis and treatment? Im at a loss. I know im not making this up.

    1. Hi Casey. How are doing these days? Sorry that no one replied any sooner. We have a very active Facebook group for CPS that we’d love you to be a part of, if you haven’t already found it.

  5. I have had 4 ketamine infusions in the last year for this insidious disease… they do re set the severity of our symptoms. My neurologist also injected botox into my forehead, jaw, neck and shoulders, around my head for the headaches…. that really works!. I take halaperidol morning and night same with catapres, brintellix and tegertol. I am in Australia … the collaborative team around me are pretty damn amazing…. i ended up with this after a spinal cord injury. Goodluck everyone x

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s