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  • Pain getting the better of me

    Try as I might this f&c%ing pain is getting the better of me! I'm not sure how much longer I can continue too live like this nothing seems to work. . I've tried a few different medications, Gabapentin, steroid shots now the pain dr. Has me using fentanyl pain patch with oxycodone 7.5 2x daily without any relief. . The pain is in my hip, back and stomach yet tests don't show anything wrong with those areas..

    It's gotten to the point where most days I wake up and really wish I hadn't its that miserable! I don't even like to eat because not long afterward I feel sick which probably has more to do with nerves than anything else. . My brain is a wasteland anymore so much so that the other day I was thinking if I did die I hoped I wouldn't be cold I hate being cold.. How stupid is that!!

    I even feel bad about posting this because I know there are people much worse off than I am I can only hope we all make it to see a day where threads like this are no longer needed ..
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  • #2
    Hey - I am sorry you are not finding relief. Hey, if you are suicidal will you tell someone. It sounds that way from this post and a few others you have done recently Cowboy's Place. Please share that if that is the case. If it isn't, sorry I raised the issue...

    Maybe there will be improvements in pain control in our lifetime. I am personally just trying to get through each day somehow.

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    • #3
      Cowboy,
      I know the pain brother, I feel it every day and when it gets real bad I have to use medical pot it is the only thing that really takes it away for me but unfortunately I can't work stoned so I only do it at night before going to bed. It took me a while to even try it. I had stopped when I became a christian at the age of 22 now at 56 I have started again and it took me about 8 years to finally try it, I don't know why I waited so long to try it, it is so much better then taking medications that are made from chemicals rather then growing from the ground. Give it a try if you can. Is it legal in California? It is legal here in Colorado. I am going to try it in a lollipop form that I just got to see if I can control the amount and find the balance between pain and function.

      Hope the colostomy is making your life easier and my offer is always open to talk on phone anytime about anything. PM me it you do not have my phone number.

      Stevie P

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      • #4
        hey

        hurts to read this. I understand, not that it brings any relief. Do you have someone to talk to? Pm me i will chat. The search for any relief is elusive i know, but it also takes time. Plesae reach out to someone.

        There is no worse than all one can endure, this is not a contest be easy with yourself.

        Ket
        Kindly,

        The Ketamine Kitty

        All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

        Next time I die make sure I'm gone,
        don't leave 'em nothing to work on JT

        And I ain't nothin but a dream JM

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        • #5
          Cowboy is a tough mother. If he is bitching then shit is real. Alot of us are on the wrong side of well these days. Pray if you pray, curse if you curse, take a bit more of this, drink a bit more of that. Smoke, toke, rant rave. Do what it takes to get through the bad patches. We live on a cliff folks, most cannot even fathom our struggles. That makes you all warriors in your own right. Fight it, fuck the pain, ignore the voices.

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          • #6
            This had better be the year for those in pain to get relief. I hope.
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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            • #7
              I hope so too. I can't wait to get back to SF, the cold in Minnesota is killing me.

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              • #8
                Cowboy, just a thought after reading that you're feeling sick after eating, are you sure that your not blocked up? Which for me also makes my CP worse. It just sounds a bit like it to me and I thought it was worth mentioning just in case. When my pain is bad I sometimes let things like that get away from me. If you think it's possible, but you can't tell, you can have an x-ray.

                All that works for me is the fentanyl patches, but I had to get approval to replace the patch (100mg) every 2nd day, as there was no relief on the third day. Goodluck, hang in there.

                Clayton
                "Wheelie Wanna Walk!"

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                • #9
                  I knew I could count on my SCI brothers and sisters to give me encouraging words and I thank each and everyone of you from the bottom of a heart. I spent some time Thursday night in tears telling my mother didn't want to go on living.
                  After an hour or so of her explaining why my various ways of ending things wouldn't be easy or good it basically came down to it would break her heart..

                  I spent yesterday trying to figure out how I was going to crawl out of this hole.. I still don't have any answers I can only hope things start to get better real soon!!

                  I called the pain clinic I've been going to for the last two months to let them know the fentanyl patches aren't doing anything except making my mouth extremely dry and harder to breathe when I'm laying down.. weird huh
                  They informed me the Dr. Was on vacation and wouldn't be back until Wednesday. .

                  Geoman, I don't think I'm backed up I had colostomy surgery back in September and output seems pretty consistent I will keep that in mind.. I'm also scheduled to go in this Friday for an ultrasound on my kidneys and bladder. .

                  Again thank you all for the encouraging words hopefully I will start too see some light at the end of the tunnel
                  Courage is being scared to death but saddling up anyway. .(John Wayne)

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                  • #10
                    Cowboy,

                    I feel your pain. Times like this my father would tell me to "cowboy up". I know, I know easier said than done but you seem to have such GREAT support from your Mom. I used to be on fentynal patch 50 for my nerve pain but it made me act spacey so I had to get off of it.

                    I hope you find relief soon, I just wanted you to know I was thinking about you and wishing you the very best. Hang in there.

                    Evonne
                    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

                    walking quad-Central Cord Syndrome

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                    • #11
                      Thanks Evonne, the support I get is fantastic but I think even if if mom is beyond frustrated! So you were on these pain patches for nerve pain did they help you with that pain at all and what are you using now for pain?

                      I don't think I should use it anymore aside from dry mouth my anxiety seems to have skyrocketed. Along with just wishing I was dead and I have let this pain consume every waking minute.

                      Now I believe I have another uti the third in the last 2 1/2 months bring on 2013
                      Courage is being scared to death but saddling up anyway. .(John Wayne)

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                      • #12
                        I hope you are feeling better. The patches just did'nt do anything for me. I thought I would lose my mind on those things. I finally started going to a pain clinic and was put on ms morphine and percacet. Does'nt get rid of the pain, but most of the time I can tolerate it. I was hoping for more relief.....enough to live life again to the fullest, but that did'nt happen.

                        Don't give up......

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                        • #13
                          Cowboy,

                          The patches did work somewhat for my nerve pain, but the side effects from them were so bad ( dry mouth, dizziness, spacy, memory loss etc.) I got off of them. I had to take methadone to ween off the patch. I only took methadone for a month or so. I now take Topomax and Cymbalta for my nerve pain, does not do great but takes the edge off.

                          Evonne
                          I have a spinal cord injury...a spinal cord injury DOES NOT have me!

                          walking quad-Central Cord Syndrome

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                          • #14
                            I had to stop using the patches after two weeks it was absolute misery, of course the Dr. at the pain clinic I go to is on vacation and we'll be back next Wednesday. However that didn't stop my morning attendant Melinda from calling his nurse and letting them know in no uncertain terms was this acceptable. So get this I don't know where he's vacationing but his nurse cannot call or fax him they can only contact him through e-mail. Melinda let them know we wanted something else done and started by noon so at 1130 I got a phone call saying of the Dr. wanted to start me on Lyrica. Yes I have read the horror stories on here about it but I'm running out of options I'm also trying to get into the spine clinic at UC Davis Medical center.

                            Evonne, he prescribed methadone to me because he says it's too easy to overdose on and I'm fine with that reasoning. I will have to look up Topomax I have oxycodone but don't really isn't doesn't do anything for the nerve pain.

                            PS great profile picture, take care
                            Courage is being scared to death but saddling up anyway. .(John Wayne)

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                            • #15
                              Originally posted by Cowboys_Place View Post
                              I had to stop using the patches after two weeks it was absolute misery, of course the Dr. at the pain clinic I go to is on vacation and we'll be back next Wednesday. However that didn't stop my morning attendant Melinda from calling his nurse and letting them know in no uncertain terms was this acceptable. So get this I don't know where he's vacationing but his nurse cannot call or fax him they can only contact him through e-mail. Melinda let them know we wanted something else done and started by noon so at 1130 I got a phone call saying of the Dr. wanted to start me on Lyrica. Yes I have read the horror stories on here about it but I'm running out of options I'm also trying to get into the spine clinic at UC Davis Medical center.

                              Evonne, he prescribed methadone to me because he says it's too easy to overdose on and I'm fine with that reasoning. I will have to look up Topomax I have oxycodone but don't really isn't doesn't do anything for the nerve pain.

                              PS great profile picture, take care
                              BE VERRY CAREFUL USING THE TOPOMAX IT WAS ONE OF THE FIRST TIMES I EVER CONSIDERED SUSIDE since I had been in the wheelchair, I think it was about 7 years to be exact.

                              Methadone I have been taking for about 9 years and it is the only thing that really works. I get no dopy feeling from it and without it I would be miserable with the amount that i am taking it just takes the edge off of it so most of the time I can leave with the pain.

                              to manage my pain.
                              Methadone (5mg pills) 2 at 10:00am - 1 at 3:00pm - 1 at 10:00pm
                              Gabapenton (600mg pills) 1 " 1 " 1 "
                              Cymbalta (60mg) once a day in the am
                              With the methadone I started with 5mg pills 1 in the morning and one at night and then went to 1 three times a day and then to the above dose. Methadone has been around for a long time and honestly and have so side affects from taking it and I feel that I am on a low dose that works really good.

                              With the Gabapenton I left Craig hospital taking the max 1200mg three times a day and then one day I cut it back to 600mg (in Half) three times a day and my pain got better (i had less pain).

                              Again I feel that Topomax is dangerous I have a friend who was a missionary in africa and they prescribed it for her and she had a real problems with it also. She also told me that they use it a lot in 3rd world countries.

                              Stevie P

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