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Social support=0, nada

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  • anger, frustration and self loathing all need to be worked through. It is part of the process of acceptance and you are doing that and now doing more by acknowledging it by telling us about it. Well done for that, it's a hard road but walkable.

    I found myself in a situation a couple of years ago, very isolated without siblings or parents around me due to a move out of area. When you are at rock bottom that is a terrible place to be so I had to dig deep.

    I made a contact through aqua therapy and now have a new friend in the area and several out of area from past employment and lots of contact on this forum now which helps hugely.

    My pain has not improved, in fact it has got a lot worse but I feel better due to knowing I have support and offer support, in person and from a distance.

    Please keep sharing with us, your inner thoughts and feelings as you will begin to see, others have suffered, are suffering and more will suffer but we can help each other at different times.

    I totally understand the more active, the less pain followed by awful nights. Tonight has been one of those for me. If you have any tips to help me I would be grateful to learn some new ways to deal with it.
    AJ
    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
  • This site seems different than 4-5 years ago. It seems a little better now.

    Bottom line is: If I can control the pain the rest goes with it. Simple

    Reality: The pain can only be controlled enough to keep me out of the ER. For a year I was on the two strongest longterm.and shorterm medications so I could take care of my father(220lbs) with vascular dementia from congestive heat disease(that's when it really got bad). I got tolerant, So I have to be carefull. If I go to far there is nothing that can be done.

    I CAN'T ACCEPT REALITY....IT KEEPS CHANGING EVERY 5 MIN.

    I would like to take my bass boat out. But my balance is so bad I fall over just standing on the deck on the trailer

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  • I think you should talk to a therapist weekly and get some exercise, even if it's just a walk around the block.
  • IN REGARDS TO THE MEDS:

    I have gone through every opiod type medication, every tricyclic antidepressant, over a dozen muscle relaxers, and two anxiety medications. Were I live no PM will allow anti anxiety meds to be used in conjunction with there treatment. For a year,between PM, I was given 1mg Xanex every 12hours, worked very well. Long story but cannot anymore. I am on Fentynal, loratab,flexiril,cymbalta,lidocane patch, these are the only thing that works. For about 8months i was on daludid and fentynal. It took a year before the withdrawal symptoms stopped. What I have now is the only thing that works, and i am walking the fence on that. Just had a flare up from hell, it will take at least a week of 1/2 dosages to get my tolerance back down

    THE THERAPIST

    I looked for 4 years, there were none and I live in the Balt. Washington DC area. A therapist who has pain started one, I got thrown out after my first vist, 10woman crying about the condition and one man ready to punch a hole in the wall. Oh the relaxation techniques, well they open the door for spasms of every muscle on my right side.

    I now have written permission from my heart doc to get a MRI, last one was 2011,(stints in heart,docs won't do it). To see what's going on in there

    4 months of aqua thearpy where it took 6 days to recover and all I can do it walk without a cane  and go up stairs.

  • Oh, I simply have sciatica. Where it is coming from no one has a clue. The best guess is it's a additive combination of 4-5 things and areas. The pain moves randomly. It can stay in one place for a day or move every 10 seconds. Actually the most helpfull information i got is from a seminar on youtube. Message me if you want the name. It's very long but very worth it. Since I used to much breakthrough meds i'm laying on the sofa,ice on back, heat on hamstrings and shoulders.

    Don't know if this will get me kicked off but the inhalation of a weed helped for a little while. I got tolerant to that after a week. Plus it costs to much. Sad, i could smile and laugh again for a few minutes.

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  • memerainboltmemerainbolt IndianaPosts: 6,440
    Hi couchpotato! So many things I'd like to say but will keep it short. Do some research to find a psychologist that does cognitive psychology. I have been seeing one for almost 2 years I was fighting anxiety and depression because of the pain but mostly because of the " I can't" syndrome. I have always been very very active and energetic, rode a Harley, scuba diving, rode horses, avid gardner, rode 4 wheelers, love to fish. And that's just to name a few. My age did not stop me the pain did. Now, the only time I leave the house is to go to the doctor. I can't drive and use a cane or wheelchair.  But my psychologist has worked with me to change my way of thinking. And it has helped tremendously. Yes, the pain is still there, but my spirit is back. And I know something will be done by working with my PM doctor to help elevate some of the pain. Always have faith and hope, don't give up.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • couchpotato68ccouchpotato68 Wash. DCPosts: 138
    edited 08/28/2016 - 11:38 AM


    Hi couchpotato! So many things I'd like to say but will keep it short. Do some research to find a psychologist that does cognitive psychology. I have been seeing one for almost 2 years I was fighting anxiety and depression because of the pain but mostly because of the " I can't" syndrome. I have always been very very active and energetic, rode a Harley, scuba diving, rode horses, avid gardner, rode 4 wheelers, love to fish. And that's just to name a few. My age did not stop me the pain did. Now, the only time I leave the house is to go to the doctor. I can't drive and use a cane or wheelchair.  But my psychologist has worked with me to change my way of thinking. And it has helped tremendously. Yes, the pain is still there, but my spirit is back. And I know something will be done by working with my PM doctor to help elevate some of the pain. Always have faith and hope, don't give up.



    Thank you. In my area there has been 0 for years and years. Spent 4years calling, seeing docs from NYC to Atlanta . Nothing other than "it's the opiods,I won't see you unless you want to stop" that is a canned qoute. Recently 5support groups came up. Both were a bust. All woman crying about how they can't play with there kids anymore. I'm a little different, can not plan anything, even doc appointments. 30% of the time I have to call a cab $125 each way when i can't drive. It's not just the pain, my legs don't work very well.They rarely move when and where i tell them.. Right now life sucks,again nust drink myself to death,at least it won't be painfull, or continue a fight that can't be won... I had faith,that it could not get worse, I was wrong. Never thought i'd be bedridden 6days a week. PM me at this point i'll come out to Indiana.

    Faith...7 years of it, doing everthing supposed to, in the end. They  were treating the wrong area..There is no effective treatment for arthritus in that spot. I'll give it to Dec 31 then the hell with it.gl to the carrabien and stay drunk on the beach.

    Oh 200617' 50hp bass boat bought new. Been out thrre times.

    Damn  it really does suck.


  • memerainboltmemerainbolt IndianaPosts: 6,440
    Yep, it sucks. Sold my bike but we are about to buy a side by side, 4 seater. Instead of giving into the pain I try to just do things differently. But now I'll be able to ride with my husband in comfort going down the road with the wind in my face!! Won't be able to go thru the woods but it will be better than nothing. Are you going to pain management? Before I started going I was advised by my doctor to stay with pain management that is at a hospital. And now I see why and best thing I ever did. I start the process this week to have a pain pump implanted, can't wait. It's hard to stay positive when you have to fight all the time but I take a deep breath and say maybe tomorrow.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
  • couchpotato68ccouchpotato68 Wash. DCPosts: 138
    edited 08/29/2016 - 1:56 AM

    Yes I go to Pain Management. There goal is only to keep you out of he hospital, and have you come back every month for your fix.

    I went to the best ivy league medical school (in Baltimore ) they only even consider a pump if your terminal with less than a year left.

    Due to abuse my PAIN MANAGMENT AND ALL OTHERS WILL NOT PRESRIBE THE ONLY MED THAT WORKS. WHY????? Afraid i will OD and they get sued. It takes 4mg IV of daludid to get the pain to a 4 10 mg/day in pill form. There is no cure or real treatment for the sacroiiliac joint. I already know CBT doesn't work since it's random, no triggers other than stress. As far as the rest of the spine we'll see.

    I want to take my boat out but I can't even pay someone to go with me in case i go overboard due to balance and leg problem. They're scarred of the responsibility. I offered 200 to a neighbor for 1hour... he couldn't get away fast enough.


    On top of his [edit], you find that people are worthless trash

    Comment edited by Liz, Spine-health Moderatorinappropriate language

  • memerainboltmemerainbolt IndianaPosts: 6,440
    Have you tried other hospitals that have pain management?  This is what I do and maybe it doesn't work for everyone. When I have to see a new doctor I make an appointment to interview him her. Yes, interview. You are paying them for a service and I want to know are they going to be able to work with me and help me. There have been a couple of times I've told them no thank you, I can't work with you. I've also had to work with myself to change my attitude towards living like this for the rest of my life. It's been a struggle for me as well as my husband. But I see a psychologist every 3 weeks and read a lot. It has literally saved my life.
    Tuesday I went for the consult about the pain pump and I'm going for it. Have to. I don't want to live like this anymore.  I think it's safe to say we're all struggling constantly to be out of pain, to sleep, to get meds, when we can take our next dose. I'm tired of struggling.
    Not all people are worthless trash and I'm sorry you feel that way. We have a rule around our home, no negativity. It's puts too much stress on you. Let me know how you're doing, hope it gets better
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical Story  
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