Home » cps » Welcome to the Central Pain Syndrome Foundation Online Home

Welcome to the Central Pain Syndrome Foundation Online Home

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 101 other followers

Louise Mowder, Director of the Central Pain Syndrome Foundation, inspired the formation of the CPSF with her Message from Hell video.

We will use this website to:

  • report on the growth of the Central Pain Syndrome Foundation
  • ask for your help
  • reach out to the CPS community
  • educate medical professionals, CPS patients, and the public
  • report on advances in CPS research and treatment

Please subscribe to our website and spread the world about CPS and the Central Pain Syndrome Foundation.

About these ads

13 Comments

  1. Thank you from a CPS (after stroke 2007) sister in Sweden. Keep fighting!

  2. Wonderful to see someone speaking out about the hell we go through each day. The volume is unfortunately very low though and quite hard to hear. Is there a way to remedy this? I’m afraid those with hearing issues will not be able to hear the message.

    Beth (CPS from stroke in 2008)

  3. Iaam Anthony says:

    I have a question, please. Can you have CPS from Lupus or RA? I understand that many with MS have this, so perhaps other autoimmune diseases could be included in this. I suffer greatly from severe RA and moderate Lupus. Please advise as I have almost 700 other autoimmune disease friends within our Autoimmune Disease Community on Facebook who may need to hear about this. In the meantime, I’ll be doing my own research. Your response will be greatly appreciated. Blessings to you all!

    • louisemowder says:

      Anthony,

      I am so sorry to have such a delay in the time between your question and my reply. I’ve been suffering from some health issues myself.

      Any disease that can injure your spinal cord or brain neurons can give you CPS. Usually, Brain CPS s caused by damage to the thalamus, but it can also be caused by damage to the coryex. Any injury or lesion on any of the neurons in your spine that carry sensation can also cause CPS. I do not know the state of either your Lupus or your RA, but I do know that RA is a disease that can attack any of your systems. You may have developed a lesion – which can be as small as a pinprick – which is causing you CPS.

      You might want to print out the information we link to on our front page “For the Medical Profession,” and bring it to discuss with your rheumatologist. Most physicians have no familiarity with CPS, unless they are neurologists. Many of us have to educate our doctors, especially since they are “stovepiped” into their specialties. That’s a big part of the reason we have started the CPSF. We want to receive funding so that we can educate the medical and scientific community about this disease, and they can recognize it in their suffering patients.

      Please let me know how this evolves for you. In the meantime, I wish you relief.

      • Iaam Anthony says:

        Louise, I am not familiar with the abreviation of CPS. Please explain what it stands for as I may be more familiar with other terms that it may be. Then, I will explain further. I will share with you that along with very severe RA, I have moderate Lupus (3 forms which include SLE, Discoid and CNS or Central Nervous System Lupus) The CNS Lupus does affect my brain that was proven by an MRI of the brain. I have white spots (plague) on the area of my brain that serves my communication and memory. My memory is quite poor, especially the short-term, but I do have some long-term memory issues, as well. It’s terribly frustrating to me as one of my major skills have been that of an orator. Interestingly enough, when I am writing, I have very few problems communicating. It’s my oral skills that have taken a nose-dive. I am treated with Aricept which is the first and primary treatment for Alzheimers, yet the truth is that those of us with CNS Lupus do not have any more chance of developing Alzheimers or Dementia that the average public. Thank God for that! I now need to return to the Neurologist because I’ve been on the same dosage for about 4 years now and it’s time to increase the dosage as the disease has advanced, causing me more and more communication difficulties, yet when I first began taking Aricept, I saw an approx. 60-70% an improvement. I’ve certainly deteriorated since that time.
        Please offer me more information and I will then respond to your question and if need be, I will do research on it and then respond to you. Thanks so much for your question. It’s an excellent one! God Bless You! God Bless Us All!

      • louisemowder says:

        Hi Anthony, I am so glad that my message got to you. CPS is the abbreviation we use for Central Pain Syndrome, the excruciating pain condition caused by a lesion on the brain, brain, or spinal cord. The CPSF is the non-profit that has been created by a group of patients who grew frustrated with the fact that so many of the medical profession have never heard of it, and that there is very little research being one upon it. We aim to change that as we grow, and raise awareness with both doctors and the general public.

        If what you have in CNS Lupus, which is forming lesions on your CNS, then you very well may have developed CPS. Take a look at the links on the left-hand side of our page. Bring the printout entitled “For the medical profession” to your doctor. Discuss with him whether beginning treatment with an anticonvulsant such as gabapentin is a good idea. It may take you a few months to establish its efficacy for you, since the dosages most of us start on are fairly low, and we often end up taking amount in the thousands of mg. over the course of a day. But if it helps you, your pain will become a low buzz in the background, something that can be forgotten depending on what you are doing.

        Gabapentin is not an opioid, so there are none of the DEA-demanded limits placed on it as there are with narcotics. I do not know how it interacts with Aricept, but that is something you can research.

        I understand your frustration at “losing words” while you are speaking – I have the same problem myself, due to mild stroke damage to my Anterior Cingulate. I was an Adjunct Professor before my stroke, and it’s very difficult to teach while you are grasping for the elusive word. You know that it is there, swimming in your brain, but it’s as impossible to catch as a goldfish in a bowl. Writing is now my most cogent form of communication, as it is for me. Thank God for the internet! I hate to imagine the loneliness that people with our sorts of Traumatic Brain Injuries must have endured before the screen and thee keyboard made it possible for us to find, and share with, each other.

      • Iaam Anthony 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:

        Anthony,

        Just to confirm your belief in the connection between autoimmune diseases and CPS: I developed a crippling arthritic condition (now in remission, thankfully) which was first diagnosed as Lupus, then RA, and finally as Mixed Connective comTissue Disorder, a collagen-vascular disease. This led to uncontrollable high blood pressure. The HBP and stress were the cause of my stroke in 2007 which left me with CPS.

        Many of the CPS Alliance members also have autoimmune diseases. In addition, MS patients, as well as epilepsy patients, people who have had shingles, and of course people who have suffered from actual trauma to their CNS have also developed CPS.

        I invite you to join the CPS Alliance, which [provides support and community for those of us who suffer in what can only be described as the fires of Hell. You can join at CPS_ALLIANCE-subscribe@yahoogroups.

  4. Iaam Anthony says:

    P.S. Louise, I will go ahead and try to do some research utilizing the abrev. you offered and see what I come up with while awaiting your response. SMILES~

  5. Bob Simone says:

    12/29/12
    Just watched your video from hell. My wife has been in hell for close to two years and is there today. We just came back from emergency room today (one of many trips) where the doctors tell us they are not a diagnostic place. They had no idea how to help and we left there remaining in hell. I will continue to research and hope your time in hell is reduced.

    Bob & Tina Simone
    Ruskin, Fl
    941-809-3569

  6. Topshop says:

    Linda Ikeji blog site owner had actually been saddled with the job of looking
    after herself and fending for her household at a
    tender age of 17.

  7. kathie says:

    Hi you all do exist i am not alone!!! I am a diabetic had a tia stroke that took two days to happenn April 3-4, 2009 first day the ER sent me home i felt the pain just on my right side to my ribs the next day i was numb and feeling it right side now head to toe. Someone told me it was neuropathy. Been through a lot of drugs nothing great . Now 4 years now and now i am told it is CPS and to come to this web site. I finally found my real family… You still want me? I also found out if sugar level is up the pain , touch, tingling and all is worst!! Those fentinal patches, was using 50 mg were nothing of help that i noticed.

Leave a Reply

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

WordPress.com Logo

You are commenting using your WordPress.com 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 )

Google+ photo

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

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 101 other followers

%d bloggers like this: