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    Painful Pain Experiences

    I wanted to ask everyone with injuries what they do for their chronic pain.

    Hearing about everyone's experience with spinal cord injury and chronic pain helps. Having pain is madenning because to the outside world pain is invisible...99% of people don't understand what you're talking about and why you are not in a great mood when you say "my pain is killing me today"...really as I'm sure you all know it doesn't feel worth telling people about the pain.

    I have to do something for my pain...there doesn't seem to be a treatment for really bad chronic neurogenic pain. I was pretty pissed off when my Dr. basically said I'd have to get used to it... Some days (like now) my pain levels are mild but other days as you all know, the pain is severe.
    My injury was at c4/5 (16 yrs ago) and was incomplete...it's good b/c I have some feeling and function below my injury level but not so good b/c I have bad burning/tingling pain through all parts of my body effected by the injury.

    What is everyone else's pain like? What do you do when it's severe? Has anyone found meds that help??

    Kyle
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

    #2
    Kyle,
    I understand what you are saying. I have very strong pelvic pain. It is much stronger at night and at rest. Drugs only pacify the pain for most Sci people as well as myself. I have been injured five years and have a lot of hardware in my back. I believe the foreign matter in the body is the cause of most sci pain. I was on many medications the first two years and still had pain. I took it upon myself to wean myself off of everything and then try one drug at a time for awhile. I have found out some take the edge off just enough to live with the pain at a comfortable level. I just don't see any medication on the market that would eliminate pain for any Sci person. I know that is what we don't want to hear but I feel the doctors over medicate most of us. Conducting this on my own gave me a very good understanding of many medications. I have found the less expensive (old market) medications work the best for me. If my butt burns I will take a half pill of a 500 mg. Hydrocodone. It takes the edge off. If my pelvic starts to throb, shock & burn, I will take a antytriptelene 75mg or two and then maybe add another 250mg of the hydrocodone. Many doctors will tell you your chasing the pain. It works for me and I feel good not being doped up. I have the strength and energy to lift weights when I am off medications. The body gets too adjusted with certain amounts of medications and doctors just keep increasing the dosages to appease the patient. We then max ourselves out.
    I wish I had an answer for all of us. I try to keep too myself and avoid others when my pain is at a high level. I hope this helps to see what others face along with you. I wish you well.
    Best Regards,
    Joe

    Comment


      #3
      Good points Joe.
      C4/5 incomplete, 17 years since injury

      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

      "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

      Comment


        #4
        Kyle....

        I am going to tell you the opposite LOL

        I spent 15 good years (of 24 SCI'ed as of May 5) with pain that I didn't have to take anything for. I didn't even take a bladder med for my bladder spasms. Some of that was stubborness but some of it was just a high tolerance and low level of pain I think. My hips/lower back started hurting and I started taking prescription Ibuprofen 600mg. I gave myself stomach ulcers because my doctor didn't watch my dosages. I was also working and not taking good care of myself. Then my legs started burning (2002ish) ...my doctor started me on Cymbalta 60mg and Ultram ER 100mg/200mg which I took for nine years. Last year I knew the Cymbalta combination stopped working...I will say it was stopping working in 2009 but I just couldn't slow down with my job. I added Topamax 50mg (a day) at a very low dose in 2010 and stopped it with no relief. I did not have a doctor experienced with pain nor SCI.

        Everything came to a head in August of 2010 when I could not focus at all or concentrate any longer due to the burning. I had a wonderful doctor in Arizona. I was a long way from home with no support and alone. So i made the decision to give up my job and move back home where most of my family lived until I could get my pain under control.

        I have been on lots of pain meds last year 2011. Many doctors will tell you less is better but Quality of life is better. For me increasing the dose of Topamax (I have a thread about my visit to the pain clinic in the pain forum) and adding Buspiron for Anxiety has helped me to be able to focus. I take Oxycontin and Ultram but it does not help the burning pain. They are increasing the Topamax as needed and will add drugs if needed.

        I take my Meds as prescribed which means a steady dose all the time. It keeps the pain at a level I can tolerate no matter if its a good day or a bad day. On a bad day, I can take an extra dose. I find that Ativan helps my burning too. I believe someone else said they take Valium. I spent years chasing the pain. I hate letting it get to the point where you are "gritting your teeth" because by then most times there is no relief or for me there has not been. I don't like taking medicine and I quit worrying about addiction a long time ago. Last year my quality of life was well....I had no quality. I enjoyed very little last year. I saw no beauty in many of the things I used to love and there truly are things that I find beautiful...I just could not see them for the pain. The few things I enjoyed were overtaken by the searing burning. I have hobbies that I enjoy but just like work...my concentration/focus was gone to the point I could not even do them.

        By December of last year, I knew I was in trouble if I didn't find something to relieve the pain. I was having very bad thoughts. So I took a chance and came here to Chapel Hill where my friend lives. Although she doesn't understand the workings of chronic pain and the burning....she could look at my face and see all was not right with me.

        So I am on my journey back to learning how to cope...they call it learning mind/body skills. I am taking my medications and not missing a dose. I am perusing those hobbies once again slowly. I am not back 100%. I don't know if I will ever be 100% again. To be 100% would be my getting to a Director of Medical Records again and I don't know if that is possible but I am willing to settle for some kind of working position. Maybe that is possible.

        First and foremost....I have to work with my pain clinic to make sure this pain is under control. I have to communicate with them weekly because they care.

        I would love for you to find a place like that Kyle and someone who says "I get it", I understand.

        Have you looked into any other physicians besides your primary that told you, you would just have to live with it because you don't. I mean you do have to live with it but...having someone who understands means alot.
        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

        Comment


          #5
          Darkeyed Daisy: Thanks for giving me the link for Albany Med and reminding me that a solution to this pain (or the start of a solution) may be nearby. It sounds like you've had a lot of ups and downs with pain but that you're doing better.


          Thanks for the info paindoc.
          C4/5 incomplete, 17 years since injury

          "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

          "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

          Comment


            #6
            I am still going round and round Kyle....

            I find tolerance for the burning pain and the hip pain or bone pain as I call it rears its ugly head. I have had both types of pain for years but the neuropathic pain was so bad for the last couple of years, I honestly couldn't tell I had anything else. So I am on round two of doctors. They have determined it is not my spine causing it so that is good I guess. I feel like I am being tossed from one doctor to the next. I will write more in my thread.
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

            Comment


              #7
              DD has pretty much hit the things you need to do. A good pain clinic is a must....doctors you don't have to explain everything to because they do understand. The doctors that don't understand, well, I've never had much luck with them. They're afraid to give meds that work. None of us like taking the drugs, but for some of us there is no life without them.

              Comment


                #8
                I echo everything that DD said!! I wish that I had more to offer you in the way of controlling the pain but as my posts tell, I am far from figuring it out myself. I am still trying to just find a good pain doc. I have been to four and they all have either told me what you were told or they give me some run around. I've been injured 8 years and the first 3 or so were tolerable pain wise. The last 5 or so have been pure hell. I am finally getting to the point where I am counting the days until doctor appointments to be able to bring up the issue again.

                Best of luck to you and I hope that someone will start to listen to you!! If you find someone, send them my way .

                Becky
                T8-9 according to latest scoring.......
                since 1/3/04

                I am the best at being me. No matter how that happens to be!!

                Comment


                  #9
                  I'm going to try the local pain clinic... You'd think Albany,NY would be plenty big so that this clinic will have seen people with chronic pain from spinal cord injuries.
                  C4/5 incomplete, 17 years since injury

                  "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

                  "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

                  Comment


                    #10
                    Originally posted by KyleP2112 View Post
                    I'm going to try the local pain clinic... You'd think Albany,NY would be plenty big so that this clinic will have seen people with chronic pain from spinal cord injuries.

                    I think you should take your docs advice and try to get used to the pain.
                    The more physically active you i become the less i feel it.
                    The more my mind is focused on what i'm doing the less i think about it, the less i think about it it the less i feel it.
                    sort of

                    Comment


                      #11
                      A good pain clinic is a must, learning as much as you cam about the different types of medications for nerve pain, and being patient and trying out different combinations of meds (that needs patience and perseverance). there is plenty to try. This site has good info on different types of meds for nerve pain.
                      http://www.painclinic.org/

                      Lu

                      Comment


                        #12
                        CC has been a big help in dealing with my abdominal pain. One thing you quickly realize is that pain control is much more an art than science. It usually requires a trial and error approach. However, finding a physician who understands that and has the patience to stick with you is key.
                        You will find a guide to preserving shoulder function @
                        http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

                        See my personal webpage @
                        http://cccforum55.freehostia.com/

                        Comment


                          #13
                          I quit my pain meds after being on them for 17 years. I was cut off after they claim I failed my drug test. It's bullshit but I didn't say anything because although I knew I didn't have the drug they claimed was detected in my urine, I knew I had smoked and eaten marijuana and that automatically disqualifies me for the pain management program for which I signed an agreement. It was a blessing in disguise and I'm so happy that I no longer have to go in for those stupid ass, annoying appointments with doctors who don't give a shit about me. First of all, OMFG, how dare they just cut me off, cold turkey after getting me completely reliant on these narcotic pain meds for almost half of my life. That in itself blows my mind and should be considered extremely cruel. But whatever bc I had just started following a chiro online via youtube and all his talking throughout his videos prompted me to do my own research with regard to prescription drugs. And this is what I learned: Your body can heal itself but only if you allow it. Pain meds, like hydrocodone interfere with the body's natural healing process. The meds are awesome bc they scramble or kill the pain message from reaching your brain but just imagine how many other messages are being misdirected, killed and scrambled so that your body isn't able to function properly. I still get horrible, debilitating pain episodes but nothing more than what I had been suffering while on meds. I would have never deliberately chosen to quit taking my meds, I considered them my life line and the thought of not having them scared me so much that I felt the need to stockpile pills whenever possible.

                          Comment


                            #14
                            Definitely don't give up and listen to your Doctor that's bs. T-10 para incomplete chronic pain since injury extreme level 10 shit where you contemplate suicide. The Doctors we're doing nothing for my pain.I told them I was going to take myself out of this world if they didn't. Finally after 23 years of chronic pain and trying so many different pain medications. I had to have a baclofen medtronic pump installed for my spasms. They also tried different pain medications to go direct to my spine. I am at a level 4 to 5 daily with pain. I have hydromorphone in my pump get low doses all day long. Lasts for about 4 months then have to refill my pump. I also get 30 percocents a month only 10 mg for breakthrough pain.

                            Comment


                              #15
                              Diazapam or Klonipin takes the edge off my nerve pain. I take lyrica, but only because I've been too lazy to ween myself off it. I also find medical marijuana to help if you can find a CBD:THC ratio of 1:1. Even if you cannot find that, for me at least, it makes it much easier to ignore the pain even if the actual pain level seems the same when I give it my attention. Essentially weed is a distraction of sorts so other distractions work as well. I get so buy at work that sometimes I go for a while without noticing it so much.
                              T3 complete since Sept 2015.

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