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Information for Family and Caretakers

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18 Comments

  1. Justin Portera says:

    Had neck surgery and another surgery. Then CPS Is there any help out there. I feel torchord.

    • Joe Kyle says:

      Question was—CPS, is there any help out there? If you would like you can share you information about your Pain — Is your pain continuous–
      never stops — only varies in how intense it is — is it a burning type pain or please describe —- how long have you had this pain? Please give
      your description of the pain and the details.
      The reason I ask is — I was injured in a auto accident several years ago — as the healing was progressing — several months
      after the accident but still healing — was said by some that it was a miracle that I lived — but I had the burning from toes to
      shoulders — this went on 24 hrs. daily every day for a little over 4 years — the only thing that varied was the intensity — and I experienced
      a discovery and learned — over the next two years how to reduce the pain and now for most of the time I am able to not be bothered at all with
      that problem — based on what I know and how I use what I learned —
      and I have been doing so for better than 10 years.
      If you would like — share with me your description of your pain — and we’ll see if I think my information might could be of help to you.
      Joe Kyle 337-363-5113 if I am not available leave your name and number—reason for your call and the best time to
      call you back. email address—jmky15@yahoo.com a call might be best lst because I don’t open a lot of email that I don’t
      recognize who it’s from. Best Wishes, Joe

  2. 3G Sensei Dion says:

    I had double brain aneurysms burst & woke up in hosp. with part of my brain removed (really!) and with CPS. That was 14 very long years ago. I have it all…burning , stabbing, sensitivity, cold, hot, numbness… you name it all day, everyday. Cannabis works the best, if you can get it. I used to live in WA (where you can); Now I’m homeless & forced to stay with my elderly mother in TX (where you can’t)- my pain is thru the roof having to rely on a handful of pills. All those together aren’t as effective as medical marijuana alone. Everyone seems to think I don’t need it since I can’t have it now!; Pain =24/7/365 at a level 10 (for 14 YEARS!), but of course I don’t need it or anything else, because I’m inconvenient. Their attitude hurts me alot, & makes the pain worse. Every year is worse, too: It kinda digs a groove into you that gets deeper the longer it digs.

    I used to be involved with the CPSA support group years ago until they moved to yahoo groups and I got lost. Although i appreciate having others to “talk” to, I’m saddened that more & more people have it. I was one of the longest survivors, then.
    I’m also sorry to report that it never goes away. It gets worse every year, as does your relationship with family. One of my drs. summed it up: “what are we going to do with you? You’re not dying, but not getting well either.”
    I am dying, tho!- just not fast enough for everyone.:(

    I have a suggestion:
    We should make a CPS “group family home” just for us in a medical marijuana friendly state with caregivers and drs who understand it. After all, we ARE the only ones who really understand CPS and each other – we should make our own rules and pool our money. We may then have more political power to effect a cure, too. My experience with most drs. & family = never heard of it before, therefore not important. I’ve seen others appreciate paid caregivers MUCH more than family, maybe they’re more empathetic & don’t steal. My husband even tried to have me involuntarily committed to an asylum so he could be rid of the responsibility + keep the $! I still live with that threat hanging over my head if I’m not “cooperative” enough for everyone in my family.
    Maybe there already is one out there? PLEASE let me know. I’ve been banished to hell- in a burning hot place with burning pain and no meds that really help. If you are in the same boat as I & want to try this idea, also let me know.

    • Nancy G. says:

      Dion greetings, my name is Nancy. I COMPLETELY understand and have compassion/great empathy for how you and EVERYONE else here may feel. especially if they are either alone or living with unsupportive/uncaring/impatient people as their only choice. I can apppear to be depressed/anxious, and have been thought of as “crazy” or a chronic complainer by ignorant, insensitive, very self centered people. unfortunately,this includes a best friend I lived with for 21 years, who treated me extremely abusively after I was released from hospital for head injury in 2009, explained further below. I was expecting TLC and was traumatized, shocked and appauled by how some people who seem so kind&caring suddenly react to illness/chronic pain in others, with agression and rejectiion or abusive behavior. my bestfriend slyly moved out little by little, and deserted me two years ago after a hyponatermic(low sodium) encephalopathy and concussion. prior to that I already had a pain condition/fatigue condition invilving a spinal cord lesion C6-C7 on posterior cord,with slight myelopathy and painful cramps/spasms. of unknown etiology. moreover, severe, 7 levels of cervical bilateral forminal nerve root impingement, and other disc and degenerative spinal/arthritic issues. also have radiculopathies and non compressive neuropathies at elbows and knees, AGAIN, of unknown etiology. CPS began with the brain swelling mentioned above which happened in 2009. brain injury was not followed up because pcp minimized the entire episode. I went to office visit the day before and described my symptoms and was ignored, and sent home! the next day was delivered semi conscious via ambulance to hospital. I believe he was afraid of liability and did not refer me to neuropsychologist for further evaluation, treatment or testing. he blamed the neurologist/pain management center I was already being treated at prior to the CPS pain, I was treated for nerve pain. my “family” members are hostile,unsympathetic & indifferent to my pain and memory issues and are abusive toward me and at best simply dismissive and cruel. Even the neurologists at the pain management center cause me to become so anxious because they truly do not take the time to listen to their patients.they stare at test results instead. any misdiagnosis/misunderstanding is almost impossible to challange once written in the file! when I go there my blood pressure sky rockets, and Im so tire/in so much pain I can barely communicate very effectively. so sad&devestating it is for so many of us without good Dr.’s or support system in place. I was like wonder woman before all of this. i had a boat and was learning to fly, lived a very active/happy social life. I am college educated, was invited to a PhD program as well as recruited by the Ross medical school in my late 20’s (1992) before other nerve issues(1991) and THIS CPS (2008-9) turned me into someone I no longer know or recognize/identify with as “myself”! It is a cruel and lonley way to live without proper support from other human beings&appropriate medical care. I now am forced to survive on minimal SSI payments and foodstamps and wound up living in substandard, dirty, one room garage without plumbing, toilet, sink, shower or stove. alll of my belonging getting destroyed in a storage unit as I wait to find a suitable new home. I cant take care of MYSELF properly under these horrific,humiliating conditions, and am ashamed to admit that it my family’s garage, and they made no room for me to live inside their beautiful home 200yards away!!! I empty my porta pottie in the woods behind the house everyday! it is a very sick/selfish situation. BEFORE this, I lived like a normal middle class educated upwardly mobile person, in a nice home/safe neighboorhood on the water in Long Island NY. had a boat, flower garden.hot tub and good life. now I cant locate affordable housing, and the social service department personnel are awful, and have treated me terriblw offered no help/solution. adult protective services came to see me, and upon a superficial assesment, did not want to enter this dirty place, which has such a bad odor due to my inability to function properly/have no assistance, that I want to cry daily(as I love cleanliness and organization)and this place is piled full of dirty clothes, suitcases, boxes from my move after hurricane, when my best friend/roomate of 21yrs moved out .the two APS women stood in the doorway looking at me as though I was mentally disturbed individual. what else could possibly explain WHY anyone would CHOOSE to live this way. I am quite disheveled looking(used to dress very nicely&loooked so pretty with highlighted hair to french nails/stylish clothes) I now look like a homeless person from all the stress and hardship. they looked disgusted, and I saw on their faces no empathy at all! were they not sent here to help? most people do not realize through their own denial, cognitive dissonance and disassociation, that this COULD happen to THEM or anyone they know. they ran away as fast as possible! judging and misjudging all the way! Dion, you, or anyone here may e-mail me at ngjazz@aol.com. I could also use a roomate/mutual support system or a few of us on minimal $ disability could pool our resourses and live in a normal environment with those who understand and support eachother. Id like to look like mself again. However, I do not/cannot use marijuanna. it does not work for me, I dont like to be mentally impaired. my rational mind and intellect is all I have left of the “old” me, and I enjoy being able to think clearly, without being in any way impaired by some of the mind altering treatments for this god awful condition. My mind is impaired enough, as you all know, the pain can drive one out of their mind some days, and being unable to focus, memory and concentration issues from encephalopathy is hard enough. It is so easy to become emotionally overwhelmed by even the most simple frustration. I also have a restrictive lung disease from a antibiotic severe adverse reaction. you could grow your own. If ANYONE in the NY area is in a similar awful living situation, and would like to feel/live in a normal reasonable, comfortable, home environment again, let me know. Low income housing is almost impossible to obtain. waiting lists are years long. I would not survive, and would be terrified to live in the run down, unsafe neighborhoods that most of this type of housing is located. I am not accustomed and unequipt to keep myself safe in such areas. that is no place to be for an “unstreetwise” 51yr old disabled woman to live alone. blessings to all here. I apologize for such a fragmented post. It has been one of those days, however, I did not want to miss the opportunity to reach out and say hello, and send my appreciation that this organization exists thanks to the heroic effort of those who can least afford to use their minimal personal resourses to give support, when they barely have enough for themselves. Bless your hearts. sincerely, Nancy

  3. jean says:

    Wife of a c ps patient. Need resources and support

    • justin and angela portera says:

      jean,
      I am a Wife of a cps patient and a arthritis person myself I have a nursing background maybe we can swap stories and get some insight on how to deal with things my pone number is 5756917720 my name is Angela Portera feel free to call me anytime.

  4. Anonymous says:

    Hi please email me @ jternes32@comcast.net

    • Emir says:

      That’s really cmoomn, CL. Place a small pillow or folded towel underneath your back support zone. That will bring the floor to you and allow you to feel your connection. Sometimes that ability goes completely offline and has to be nurtured back to awareness.drh

    • Gemini says:

      I tried this but find that I struggle with the leg enoixsetn part of the test in keeping my ribs down on the foor. I am sure that the yoga has helped me strengthen some what but I am looking for even more improvement. My grandmother and mother and sister have struggled with back pain throughout their lives and I have been searching for a way to keep from following in their footsteps. I want to pass on some of what I have learned to my mother to help her with her pain but I am afraid her degeneration is too great. I don’t want to end up the same way so therefore I look for a way out. I look forward to working your program and seeing how I can improve my posture and decrease my pain .. Thank you for making this avaiabe online.

  5. Shannon Hallenbeck says:

    I am a mother of a 19 year old daughter with Central Pain Syndrome. She was diagnosed with CPS one year ago at Mayo Clinic after the amount of medications she was taking became overwhelming. My child had a kidney stone that was removed and a stent placed in 2012. From that point on she describes pain that is equivalent to passing kidney stones 24 hours a day. There are times she lays on the ground screaming and crying. She has lost all of friends, cannot stay at school for an entire day, and cries when we make her leave the house. She has been through a pain management program where they took all her pain meds away. Two weeks after returning home she told me she was going to kill herself. Doctors tell me nothing is wrong with her and have done every study possible. We want her to go to college next year but her dream of going away to college seems out of reach. This has changed our entire family dynamic and wanted to know if there are others out there dealing with this same situation. My heart breaks everyday and if anyone knows tough love it’s my husband and I. I feel alone, are there support groups out there for families dealing with this? We tried a therapist and she looked at us and told us point blank she has never dealt with this before and didn’t have any ideas to help us. If anyone has a group or foundation they have found helpful please share :)

    • Lisa says:

      Hi Shannon,

      I can relate to you. My husband and 16 year old niece both have a mysterious pain disorder too. They think Darrin has Somatoformic Pain Disorder (because they couldn’t find an underlying physiological cause), and Ashley is so young no one wants to label her with anything except Chronic Fatigue. She can’t make a whole day at school and now has only 2 friends. Apparently there was a cousin years back who committed suicide at 20 because he couldn’t handle the pain. Have you found a familial link?

      Our loved ones are not lost. We can help them find ways to continue participating in life. Just like a person with a more traditional disability, (wheelchair, deaf, blind) alternative and creative strategies and help stay active. Social networking via the web, short trips out, always being flexible about timing. Even work is possible, but just not in the traditional sense. Darrin works from home at his own pace.

      Please continue communicating with us!
      Lisa

      • Anonymous says:

        Lisa.

        Thank you so much for sharing. Have you considered medical marijuana. She has now developed headaches and we are at the point of thinking this might be an option. I am sure you get frustrated as we do. There are days where I cannot deal with it. So I can’t image how she feels. I just hope she can find a way to become a active member in society. I hear all these people becoming homeless and alone. That scares me for her.

      • Lisa,
        I know its been a while since your post but ive also been dealing with CPS for 6 years now because doctors missed my burst appendix for 8 days and the sepsis and infections everywhere and fever put me in a coma for 2 months to get all of it cleaned out. this all happened a week after i gave birth to my second child. Now because of my illness the courts in TN took my children from me and gave them to my inlaws which makes the stress go up which means more pain as well . I can tell you 100% certainty you need to get them both on medical marajuana it is the only proven medicine to take away most of the pain with minimal dosage so you can still function. ive tried every freaking treatment under the sun …….that was the only thing that killed my pain and now im trying to save the money to get to the liscense doctor so i can get on it legally myself and take the 2 hr drive to where he is as well. but if you live in a MJ state do them a favor and yourself a favor and get them on it asap. It really does work and helps you sleep too. Check out all the information you can find now on how well it works for CPS they will thank you just dont let them smoke to much it doesnt take a lot at all to control the pain. good luck to you and yours

        Shelly

  6. Lisa says:

    Hi, My husband Darrin is in chronic pain, and it has been progressively getting worse for 20 years. He is currently diagnosed with somatoformic pain disorder, but I still feel there is an underlying physiological issue. He has had a LOT of past physical trauma, car accidents, sports injuries and the like. I wonder if there is a pinpoint of damage in his CNS that has gone undetected. We have had EXTENSIVE scans and tests done thru our local hospitals and they all say he is in top shape. Yes, he presents with psychological issues too like depression, anxiety and social disorder but I feel much of that is fueled by the PAIN! He has tried lots of different meds to see if any helped. The best he can get is pain meds, but they only work to a degree, and that is such a slippery slope.

    We need to help eachother by sharing here. The more we feel connected the better off we are.

  7. Lisa says:

    Thanks for being brave enough to mention medical mj. I believe it does help with some of the symptoms. I can watch my husband slowly begin to come out of an episode after just a few tokes. We live in a state where you can get a prescription, but not for his diagnosis. Actually, we can’t even go to a pain management center because they won’t treat him if he tests positive for THC they label him an addict if he uses “street drugs”. I do recommend growing your own mj or finding an organic source. Many big farming operations use agricultural chemicals that are bad for us.

    As for my niece again no perscription for her and she is so young we are concerned with brain development. Of course being 16 she is probably trying it anyway.

  8. Annette Marie Stuart says:

    ive been living with cps for four years now…recently underwent four hours of eye surgery under general anaesthetic and actually prayed that by some miracle i would wake without it….in fact i woke up in the worst state ever. luckily the anaesthetist had been talking to me prior surgery , understood my condition and promptly zapped me with the big guns in recovery. I then wen on to another hour of surgery on those same eyes two hours later under local…sheer hell. No one gets the trauma that just one more p thing tips the scale right over. they eyes although stitched and sore were nothing compared to the cps up and don my spine and out to my limbs and head. Instead of being allowed to rest a while i was hurridly discharged both by the docs and my partner only for me to faint on the floor with the whole sorry trauma of it all.
    We are not soft or have low pain thresholds, we are survivors and warriors. Its hard to think that this will be with us till the end.
    Mine began after severe swine flu in2009 contracting post viral cord syndrome myelitis leaving me with all the problems of central nervous system deficit including spacticity in legs and arms,bladder and bowel, deafness and double vision to name a few. In the early days i thought the pain was nerve recovery in the damaged peripheral system due to the neuropathy but no it was due to this ither monster cps. Disability is a doddle compared to this sort of pain. My recent reward of a manual wheelchair lies in the garage dust gathering as i cannot self propel and my partner works full time together with caring for me at night and doing all the chores. I waddle around using afos and crutches, every step like Im walking on glass getting nowewhere fast. I try really try having gone through a very intense pain management research programme hoping for the golden carrot of a pain pump or spinal stimulation only to be turned down due to the pain and my underlying conditions being unstable
    I cannot really go knocking on the neighbours doors to be taken out in the chair on the bad days and my partner is at work so i stick to my little Bermuda triangle of a mile around the lodge inch by inch with my trusty hound for company and extra long poop scoop for the obvious. I’ve only just been informed that my cps is the hardest to deal with as it comes from within the spinal cord and that’s why only the heavy narcs take the edge off. \my other rare condition progresses. The other type can be helped a little more with the gabas and such as that type is within the brain. /so what’s next? after hectic weeks dealing with my dads demise and his messy estate? Recovery from this eye surgery and then what? Do i continue the quest for the holy grail cure seeking as the professionals cause it or do i stay in this drug induced half life. Well i now know that anaesthesia although helps us get a much needed time out from cps the evil one returns with a vengeance.
    Do I follow another path to more pain management in the hope someone will see that we cant carry on just existing! I loved my healthy hectic life before, I love life now. I refuse to let cps control me yet i cannot really control it. its a constant. :life in a separate bedroom without intimacy losing ones identity and femininity ti steroids and the indignities of self catheterisation and the other awful thing that just causes more pain,
    But to be offered a manual wheelchair was and is an insult so it looks like turning to meagre savings in the hoe i don’t buy a duff , partner works so no charity will help . I find it almost unbelievable that they are basically expecting him to fork out something for my own personal independence! even then it has to be tilted and wth raised foot plates as like most of you I cannot sit in the usual h position and most always have my legs up semi prone. It was after all the consultants advise that I give my body a rest sometimes after a full four years of trying to keep mobile with private hydro nd neuro physio these afos and crutches together with an arsenal of drugs that frankly embarrass me . I long being out without just enduring everything through gritted teeth . To be offered that chair is an insult, they suggest i push it round like a zimmer??!! I’m not my usual bubbly self and I’m sorry for that but I’m very low..close family snapping at my ankles over things that i had no control over with the mess dad sadly left. carrying the guilt i couldn’t oversee his care at home properly leaving him dying with nothing due to persons unknown fleecing g him weekly. At least he empathised due to his stroke pain and now even he is no more. Not a word of thanks k or indeed encouragement post op…yet my face book friends all comment and wish me well.
    Thanks for listening. Eeyore is leaving the building and arnold s will be back , ketamine here i come . Farewell ambulance career and driving a bmw on salary lady known as
    stockingtop when you cant stand to be touched or have the duvet near.

  9. Annette Marie Stuart says:

    just had to add at least being in the uk i have access to script drugs which help some my heart aches fothat yougne0ja

  10. greengardengirl says:

    Still no script for MJ, but our supply is reliable so he is getting by. Our neice is now 18 and does find relief from MJ. Her pain is so great she can’t sleep,but MJ takes the edge off just enough for her to rest.

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