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Just Want to Scream

I an going on 6 months post ALIF and the past few days my pain level has been so intense that my body has actually been shaking. My family has been writing all of it off as "no big deal", "using it as an excuse to do nothing", or from my mother who has spine issues, but not the same as me"I have the same pain and still do things". I do all I can to bite my tongue and not flip out on all of them". I also worked and led a normal life for 4-5 years with this pain until I reached my breaking point and moved back home to get it taken care of. I've had the surgery, wrnt to therapy, had the injections and nothing has worked. Tomorrow I have the psych eval for the neurostimulator so I hope I can at least lower my pain by half with that, but until then, I need a way to convey to my familt just how bad I feel 24/7. So fellow spineys, do any of you have any suggestions?
--Ryan
Ryan
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Comments

  • dilaurodilauro ConnecticutPosts: 10,059
    narcotics are not the answer to everything.

    Pain is something that as spinal patients we need to understand and come up with ways to manage it. If we do not manage pain, pain manages us and then it becomes a downward spiral that is almost impossible to climb out of.

    Managing pain requires a multi- facet approach. I like to call it The Blend

    I am not saying you are going to be pain free or anyone or that if the stimulator you get will do it for you. I have found over the years hear the SCS and ESI success rates are very similar. Some people get a lot from them, while others do not.

    Always keep an open mind and a positive outlook on what tomorrow will bring
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • itsautonomicitsautonomic LouisianaPosts: 1,950
    Uncontrolled pain can cause damage just as long term use or overuse can so its a balance. Getting pain under control so u can think straight and get plan of action is the only way in my opinion . Then you work out the rest of how u attack it . When pain uncontrolled u make stupid choices and lead down bad road.
    To be honest in dealing with family is just focus on yourself getting better. I've dealt with same early on I was a hypochondriac and it was just anxiety after spinal cord injury, well now after I was diagnosed by some prestigious hospitals they have to live with that guilt for doubting me for the rest of their life. My brother even said I was hypochondriac because I had to go all the way to ( one of top hospital in US in rankings ) when drs in my hometown couldn't find anything which is the stupidest thing a person could say that a place with best drs, best experience, best equipment. Found answer but I'm a hypochondriac because a town dr couldn't find issue? Amd he has health issues like bipolar that many people think are BS or over diagnosed so he is familiar with the doubt. But you know what if the smartest drs in the world tell me something is wrong and is diagnosed and testable I don't need anyone else's opinion. And besides can't fake testing . It's hard to hear, hard to deal with but focus on you and let them feel guilty for rest of life for doubting.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • dilauro said:
    narcotics are not the answer to everything.

    Pain is something that as spinal patients we need to understand and come up with ways to manage it. If we do not manage pain, pain manages us and then it becomes a downward spiral that is almost impossible to climb out of.

    Managing pain requires a multi- facet approach. I like to call it
    The Blend

    I am not saying you are going to be pain free or anyone or that if the stimulator you get will do it for you. I have found over the years hear the SCS and ESI success rates are very similar. Some people get a lot from them, while others do not.

    Always keep an open mind and a positive outlook on what tomorrow will bring
    I've been told that some people with the scs have their pain reduced by 90%,some by 50%, and some had none. I'm hoping it will bring some relief, but am aware that theres a chance it won't, and I'll try something else. I always try to have a positive outlook for sure. Just needed to vent because I was having one of those "pain on 10 or more" days. Thanks for responding
    Ryan
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 06/08/2015 - 1:32 PM
    Darby. Have you read 'Letter to Normals & Spoon Theory' (posted at the top of the Chronic Pain forum)? Some find that family & friends get a lot from reading them. In my experience people either want to understand or they don't & there's not a lot you can do about it. Some are simply more compassionate than others. I wonder why, I think about their characters, nature/nurture etc. I find that understanding those who don't understand me helps me care less what they say & do. Know what I mean?
    I'm sorry you're not getting the support & understanding that you need. I agree with itsautonomic. Your priority should be YOU. Managing your condition & your pain the best you can. Depression & anxiety are terrible for chronic pain. I know that "Don't care" is so much easier said than done....
    Osteoarthritis & DDD.
  • I actually copied and saved the "Letter to Normals" because it really hit the nail on the head on how us with chronic pain feel and think
    Ryan
  • Deb MohrDDeb Mohr Posts: 34
    edited 06/09/2015 - 11:04 AM
    I just wanted to chime in here. When I had my lumbar fused in 2001 I was left with the worst leg pain I had ever experienced. I was told that the nerve had been crushed and the best possible chance we had for improvement was to break the pain cycle. I was on heavy duty long acting narcotics and lyrica for nearly 8 years. I had lost hope and was having a hard time working. I am also one of those people who dispise the way narcotics make me feel.

    I begged my ortho to send me to a long term pain facility. I met an incredible pain specialist who told me we had not tried everything and not to give up. We decided to do a trial run with a neurostimulator in 2005 hoping I could stop with all the darn epidural so, trigger points and heavy duty drugs.
    We installed the neurostimulator and I will never forget how I felt when it turned on the first time. It felt like champagne bubbles floating up my legs. We installed it permanently and over time began to get me off all narcotics.
    It took about 2 years of using my neurostimulator constantly and then all of a sudden I no longer felt any pain in that leg. That was in 2007. I no longer take any pain Meds nor do I even have to turn the device on unless I am having a terrible day. I can count on my hand the number of times I have had to use that system since 2007.

    The neurostimulator gave me my life back!

    Now of course I have cervical issues but that has nothing to do with my low back issues. If I need to, I would definately plan on installing another device for my cervical issues.

    This is just my two cents but I was so thrilled with my outcomes!
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