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one of many but still alone

2v8822v88 Posts: 6
edited 06/11/2012 - 9:01 AM in New Member Introductions
hi all,

I read through this and other forums and realise, that I am one of many and that many are going through similar experience.
But in the dead of night when the gnawing pain tortures me and sleep is just an unattainable nirvana. I am very alone. Tortured, exhausted and very alone.

Here for advice and some escape
"A towel, it says, is about the most massively useful thing an interstellar hitch hiker can have. "
The Hitchhiker's Guide to the Galaxy
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1

Comments

  • First let me say welcome to spine-health. As you have seen there are many with similar issues. Your not alone, as there is usually someone online at all times. Check out the chat section, as sometimes during the night it helps pass the pain and get your mind off the pain. What type of spinal issues do you have? Also what types of treatments, medications have you already used? How long have you been dealing with spinal issues? Giving the members more information will give them more to discuss.

    Just thought I would stop by and welcome you to spine-health.
  • Hi There 2v88 :H ,

    Let me echo tamtam in welcoming you to Spine-Health =D> . We are all riding the same ride here, just each in our own ways. Yes, I know what you mean ... we ALL know what you mean. My Pain Game began about 6 years ago and continues. At present, I am somewhat comfortable, with the aid of medications. I still have my flare-ups I guess to remind me that I am not nor will I ever be completely be pain free again. I just keep trying to take one day at a time. Some days I need this website to remind me of that ~X( .

    All of the friends I have made here on Spine-Health have become my 2nd family and my "lifeline to the outer world". I don't know what I would do without this website and all of the wonderful people that listen to me when I need a shoulder to lean on. Only we can understand through what each of us truely is going. You can't explain it to your "other half" or your family or your friends. Only someone with chronic pain can understand it ... and that's why we are here for YOU too :))) . We will listen to the good and the not so good. Just please keep us posted on how you are doing and what's going on with you, what kind of treatment you are undergoing, etc. You may give US some ideas, too. Any questions you have, we would be happy to answer, it we are able, whether on the forum boards or by private message (PM) So ... climb aboard the train and grab a seat. Free ticket ... No expiration date :D . Stay strong. Hope to hear back from you soon.
    Rassy

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
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  • hi and welcome to the forum! we are here to offer you support and answer what questions we can.so glad you dropped in! no need to feel alone anymore! you are now among an understanding and friendly group of spineys..please feel free to stop by anytime, there is always someone around! Jenny :)
  • lulusheart,Rassy & tamtam

    Thanks for the welcome I hope to get to get some good advice and have an outlet for frustrations.

    On the questions of my condition

    DDD + Spinal stenosis

    Had
    discectomies
    laminectomies
    Facetectomy
    Percutaneous disc decompression.
    Fusion + Instrumentation l4-5 & l5-S1
    facets injections - l4-5 & l5-S1
    Caudal epidurals
    used
    Tens.
    Mindfullness mediation
    Any and all opiates

    This all over a 5 year period

    I am currently having a so called flare-up which means that I am now mostly bedridden and have been for the last six weeks
    "A towel, it says, is about the most massively useful thing an interstellar hitch hiker can have. "
    The Hitchhiker's Guide to the Galaxy
  • Hi and Welcome as everyone else has said!!

    I have had many of the same issues as you, and the same attempts at fixing them.

    I am fused L1-S1 and now have SI joint issues (where it all started). With a pile of bone sitting on the SI it was go be expected sooner or later. It just happened sooner.

    I have had cortisone, prolotherapy, accupuncture, rhyzotomies... The only thing that really solved the problems was the fusions (with instrumentation).

    My saving grace was neurontin. My family doctor prescribed it. I have a spine doc, a pain med doc, an internist (all of whom are excellent!!) and it took the family doc to figure it out. It works really well on the nerve pain. I also take tylenol 3 for what I call the bone pain. I was on tramadol but it interfered with my healing level of sleep and i tried hydrocdone and oxycodone both of which I hated and didn't do much for the pain.

    This is a great support group. I often feel alone as I cannot participate in my normal activities. Its very frustrating and sometimes downright unfair. I was in a hit and run accident so really feel angry at times. I am starting to get over it since it has been a long time but it sure stole my life.

    I am still able to swim and being weightless is so wonderful. I would recommend it to anyone with back issues. Of course check with your physician first.

    I had a very strong core before all my surgeries and try to keep it up. I know it helps.

    Good luck and talk to us anytime!!

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
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  • SavageSavage United StatesPosts: 7,385
    I too wanted to welcome you and let you know you are not alone.

    Not getting to sleep or staying asleep seems to go hand in hand with this chronic spinal pain. I can be up for over 2 days and no sleep at night and I am not even feeling sleepy..but I do feel so tired.

    It then gets in the way of life for the following days as I feel more impaired and I won't drive. Also, my concentration no so good and sleep deprived is worse. Sometimes my friends tell me I'm entertaining if talking on phone during one of those times as they can tell I'm out of it. Others..think not so funny and tell me to stop answering the phone. But I don't know when it is happening, myself.

    This SH site is great to learn etc..but also to distract. You'll notice many posts made at middle of night hours. You have a group of people now who totally understand.

    So tortured...yes...exhausted....yes..but as Jenny said...alone no more. !:)

    Keep in touch and let us know how you are doing!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • That would be JANI.

    It was probably the drugs.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Thanks again for the warm welcome.
    I was just told by my Surgeon and the Therapeutic antitheist that it is highly likely that I have Arachnoiditis and that further surgery would not be an option. Also that further facet joint injections and caudal epidurals would not work and may aggravate the condition, as it has been doing…… nice !!!!

    Basically I have been told “That is it …. Get use to it….. !!!!”

    What do I do…..???? I am so tired of saying that I am tired of the pain…. I am defeated….
    "A towel, it says, is about the most massively useful thing an interstellar hitch hiker can have. "
    The Hitchhiker's Guide to the Galaxy
  • Thanks again for the warm welcome.
    I was just told by my Surgeon and the Therapeutic antitheist that it is highly likely that I have Arachnoiditis and that further surgery would not be an option. Also that further facet joint injections and caudal epidurals would not work and may aggravate the condition, as it has been doing…… nice !!!!

    Basically I have been told “That is it …. Get use to it….. !!!!”

    What do I do…..???? I am so tired of saying that I am tired of the pain…. I am defeated….
    "A towel, it says, is about the most massively useful thing an interstellar hitch hiker can have. "
    The Hitchhiker's Guide to the Galaxy
  • Sounds as you might be heading to the final step of pain control tools, Spinal cord stimulater trial will probably be offered up to you to control pain or if that dont work the pain pump,

    I used up all my surgery options myself and finaly had the scs implanted to try and get some pain control to move foreward with life,

    These tools are mostly for patients as us who have no othef direction to further go other then make life a litle less pain free because total pain free is no longer posible,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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