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I am desperate for relief

Hi, I am just looking for a little support as I am so confused with different information given to me by various medical professionals.  I guess I should start with what's wrong with me to give you all a clue to what I'm experiencing.  Since 5 years old(possibly earlier) I have felt pain in my lower back and have not felt "normal" compared to other children.  Questions I often asked myself were always similar in nature.  "Why can they run longer, faster and easier than me?  How do they do that with all the pain?". I thought it was normal to be in constant pain from doing tasks as that was the only life I knew.  When I brought up my pain issues, I was told I was exaggerating or being "lazy" so I was very confused.  As a teenager, my back pain increased and I had issues with sitting and standing for extended periods, but only x-rays were ordered with no results shown.  I was again told that I was faking and I pressed on.  Now, at 33 i have been BARELY walking with a cane for the past 2 years.  I have finally had proper testing including ct scans and MRi and am no longer able to work because sitting and standing are horrendous pain involving scenarios.  I have no income, or insurance so it is difficult for me to schedule tests and appointments as I can not afford them as often as needed.  I have of course applied for disability and been denied as is expected, because I had no evidence to show, until now.  Now on to the actual diagnosis(some of which is not spine related, but still relavent to my disability process.). Starting with my back, I have congenital spinal stenosis on l3 l4 and l5, with the l5 having most complications.  Mild posterior displacement of l5 vertebral body over s1 grade 1 retrolisthesis associated with mild to moderate degenerative intervertebral disc derangement, posterior annular fissure and small broad based posterior disc protrusion associated with short pedicles and mild bilateral facet arthrosis resulting in mild to moderate bilateral neural foraminal narrowing contacting with the exiting left l5 nerve root.  So my doctor can't understand how I walk, but PT says people have worse diagnosis with no painmy left hand has had the honour of being shredded by falling through glass, and there is tendon damage involved.ave tried yoga, different range of motion activities and various other non surgical options with no relief(including steroids and pain management...IE painkillers and muscle relaxers as well as anti inflammatory medication.). So as you can imagine, I am confused and have finally gotten referred to an orthopedic surgeon, which I will see two for a more accurate picture of why my pain is so debilitating.  So, that's one issue and the most relevant to this forum, but I wanted to give as much history as possible before I start posting on my journey through recovery.  I have had RSD in my right arm for over 15 years with carpal tunnel to back that up(yay for me, as surgery is out of the question).  My shoulder has been shattered and I need rotator cuff surgery that I cannot afford, and my left hand has been shredded by glass with tendon damage.  I suffer from PTSD, social anxiety, MDD, panic disorder, and insomnia.  I have countless side effects from all of the medication that is prescribed to me(that I don't want to take.). I feel as though I have no positive outlet for my struggles and am in need of support, as my back is my most problematic issue to me since it has destroyed my quality of life.  No sex, no hobbies, no outings with my children, and no social outings as I fall a lot.  My left leg is numb with weakness and burning pain, from my buttocks to my toes, and never ceases, and lying down is my only form of  relief, but since I know that can exasperate my condition, I unwillingly push myself to not do so.  My back spasms are intense and frequent, and cause me to be such a fall risk.  To put it clearly, I get passed by elderly individuals with walkers, because I have the speed of a snail when attempting to walk.  I know this is a lot of information to post, especially for a first post, but I need a healthy outlet for this, as I have become increasingly more suicidal as each day passes, and don't want to burden my family with such a selfish act. Any and all comments are appreciated, and I look forward to interacting and sharing with all of you.  I know how important  it is to talk about complications, so feel free to share your stories with me.  Sorry again for rambling, but I do hope you all have a better picture of who I am now. :-)
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Comments

  • SooveritSooverit Finger Lakes region of NYPosts: 460
    Hi TXMark! Nice to meet you! Sorry you are in such a tough spot. It's so hard with kids, too.

    I can't imagine going through that as a child. One of my brothers complained of awful pain in his legs and back for a while (from the time he was 8 or 9). He got the, "oh, it's just growing pains...you are exaggerating..." He was a mellow guy, so he'd just say, "ok, I guess" and move on. Well, one day (when he was 12 or 13) while we were all hanging out, he came out of the shower with just his shorts on. We gasped and our jaws hit the floor. His body was twisted in such an awkward way! One shoulder pushed forward, one side of his pelvis jutted out. Turned out he had a congenital spine problem that caused several vertebrae to develop outside the spinal column! I guess every time he had a growth spurt, it would stretch his thigh muscles extremely tight. Anyhow... very awful to hear of children suffering for so long before they are taken seriously. I'm sorry you went through that, and are going through what you are now. You are not alone, as you will quickly see here.

    I'm so sorry you are missing out on family stuff. That really hurts and makes one feel so ashamed. My little two year old, when I am able to get up and do things with him says, "mommy, does your back hurt? Go rest!", and he points to my spot on the couch :(

    I hope that, somehow, things improve for you. Things can turn around so quickly for us. Hang in there, and please feel free to chat.

    Take care,
    Sara 
  • SavageSavage United StatesPosts: 7,385
    hello txmark!
    welcome to spine-health
    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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  • SavageSavage United StatesPosts: 7,385
    Hello TX Mark.....
    Although depression often accompanies chronic pain, it's not to be accepted as normal.
    It a symptom that needs to be dealt with.
    Below is a list of Spine-health hotline numbers:

    Suicide Hotline Numbers
    USA: 1-800-784-2433
    UK : 08457 90 90 90
    ROI: 1850 60 90 90

    When I was going through my dark time, I had hotline number on speed dial.
    I would call day or night as many times as I wanted.
    Sometimes I would listen and "just know"....they are lying to me...
    Othertimes I would compare the advice given by each of them.

    This was at same time I was seeing psychiatrist and seeing therapist.
    But using the hotline numbers until the rush of my negative thoughts and some negative behaviors ceased...calling the hotline would give me pause.

    For me antidepressants and anti anxiety meds were ..and are ...very helpful to me.
    There are therapists who specialize with patients with chronic pain and depression.
    I finally found one and she was my last therapist. She helped me tremendously!
    In fact, I have never been more content and actually happy before in my life. It sounds odd to say since presently I still live with daily chronic pain and have never been as limited in my lifestyle.

    Since you mentioned your panic disorder, PTSD, etc... I would hope you are seeing therapist and or psychiatrist already.
    If not, well...I've never been sorry that I referred myself to psychiatrist...and I truly believe it was the best investment I've made for myself..my well being.

    You said you have become more suicidal each day.
    There are professionals out there who can teach us much.
    If you don't feel motivated for yourself, how about doing it for your family? ..whom you made reference to and expressed love for them.
    I remember telling myself  and knowing...that I would give my life for any of my children and loved ones.
    Then I realized, sometimes it's more difficult to make the sacrifice to live for them.

    Please know.....you are not alone! And there is help out there for you! The thoughts can stop!


    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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