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Alone and reaching out

1rawdawg11rawdawg Posts: 1
edited 01/05/2015 - 9:00 PM in Chronic Pain
I feel like I'm at the end of a tattered rope. I have been dealing with chronic pain for quite some time and have dealt with fairly well. I have probably gone through 10 surgeries the last 10 years. Cervical and lumbar surgeries were successful, however pain for lumbar was only diminished. Head and neck cancer, chemo, radiation left throat and mouth a wreck. I'm separated from my wife and son, narcotics leave me void. I do not feel whole and want find a better place. I have had severe pain return to shoulder blade straight through to chest, arm pain and interference with hand. I have had severe pain and this is the worst (maybe I just can't deal with it). I am just a wreck, it's really ridiculous
I have no idea what I'm doing posting here, but perhaps reaching out is a first step. Nothing truly ends the pain. I've been through it all, surgeries, testing, chemo drugs, radiation, narcotics, fusions, pins, rods. Have MRI set for Friday and I know my neck is fried. I can't sleep and honestly want what I can't seem to find, some peace.
Thanks for listening, I feel selfish for wasting your time as the only folks reading are in the same boat I guess. Well, I wish you Peace!
I am Paul and I am in Atlanta


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • It's not easy with just one of what you explained happening in your life let alone all. Some are given huge life challenges and some just appear to coast. I would recommend yoga. I know if you're not the type your eyes are rolling right now. I just know that with my limited body that I can get freedom in just a few breaths at a time. As you add on movements (or can simply sit still - that was my goal for the longest time) then you see the progress too.
    This is what's given me peace. Living in the moment. One breath at a time.
  • We all know how you feel..
    It's hard keep praying, well say prayers for you also.
    I know God can listen on some days. But he is a very busy man
    Hold in there buddy.
    I'm having a bad day also.

    Mike here in Michigan
    Brrrrr it's cold.
  • SarahLindeauSarahLindeau Posts: 767
    edited 01/06/2015 - 5:24 AM
    If anything, this forum helps you feel less alone, and that is something
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • when we feel hopeless and seek some comfort that's a great first step...I and alot of us get it. It's an unbelievable struggle some days. You are absolutely not wasting anyone's time. We are all here for the same reasons and by god it helps to know you're not alone. Taking a step to vent is already helping yourself, I sought antidepressants with a shrink and started therapy which were other things to do for me. I also go to a pain clinic to manage my meds. The duragesic patch has been a lifesaver for me. I too separated from my spouse. One day at a time. Even if you do one thing a day for you it's a start to get back on a path for the new you. We will never be the same but I feel like it's all about the hand we are dealt and yeah it sucks but you will learn a new way to function with a new you. it doesn't happen overnight but it will. you have reached out which means you're trying and that's all we can ask for. Some days will be worse than others. Have you been offered a spinal cord stimulator? Mine is my lifeline...take care friend and pls don't feel you're wasting anyone's time cuz you're NOT. Good luck with the MRI :)
  • Hi Paul. I'll keep this short. I had nuerofibroma schwannoma c5 c6 that penetrated the spinal cord dura. Had emergency tumor removal. Lived in level 1 spinal rehab. Took 6 years to learn how to walk again. I am in pain 24 he's a day 7 days a week since my surgery in 2007. Taking nuerontin 3600 mg a day which is dangerous dose but helps. Maybe ask Dr to try that for you. Tumor removal damaged sciatic pathways at c5c6. And yes that's right. Even though sciatic nerves come in in lower lumbar, the pathways still travel up the cord. Every Dr I've been to explained that to me. Spinal cord injuries are tough and unpredictable. Here's what helps me. My grandma always said there is always someone worse off than you. She is right. There were people in rehab that were never gonna walk again. I am lucky. I am also the 1 person out of 100 cases in the history where that tumor penetre the spinal dura. That's how lucky I am hang in there.
  • I've been living with unrelenting chronic pain for over 9 years now. It's a roller coaster. I've had some really good times & others I can't begin to tell you how or why I endured. When the darkness comes I feel like I have to concentrate just to breath. All of 'those' thoughts we try so hard to banish consume me. I feel so terribly alone. My rope resembles yours in many ways, my marriage is in tatters, my only sibling took his own life & my aging parents mental & physical health is a huge concern. They live in England & I'm here in the USA. The guilt consumes me but I feel powerless. 
    I've been writing here for a year now. Like you, I don't know why I started or what I hoped to achieve. I don't think I'd of kept my head above water this last month without a dear friend I made on this forum. Sometimes there aren't any answers but pondering over the questions with support makes all the difference. 
    This morning my 4 year old daughter made me a cat out of Lego because "Cuddling a kitty makes everything better!". I gave her a big hug & in that moment I was at peace. I'm sure you're the world to your son, even if he's not sleeping under the same roof at the moment. All I've really learnt on this roller-coaster is hold onto the highs, no matter how low the lows get it's all worth it in the end. 
    I hope you find your peace again soon, it's just misplaced, not gone. That's what I tell myself when the darkness eclipses the light. It's a bloody hard journey but you don't have to travel alone.
    Osteoarthritis & DDD.
  • hi paul,

    that's awful your in so much pain, it sounds like you need better pain medicine. it took me a long time to get treated appropriately, and I still am just able to sit in a chair all day, barely do anything - cant cook, clean, or even pay bills, looking down is what I cant do for more than5 minutes, it doesn't matter if I can walk or if my back is ok, if I do any movement the joints trying to hold my head up hurt, and the muscles go into spasm. if you've had recent surgery a chiropractor wouldn't be good yet, but that shoulder blade pain sounds like ribs are locked up on your spine, and a gentle adjustment would be good. chiropractors are too rough, you need to find an osteopath who does manipulation. l live near Phila and we have the osteopathic college here, so lots of manipulation from real doctors, and they treat the muscles and tendons too. my grandmother was a well known DO, I was treated as a child so am very familiar with the adjustments and what they can do. I would see about getting your medicine increased, after many years the Percocet and oxicontin did not make me feel groggy at all, the body really does get used to it. I finally adjusted to ms contin, I had gotten too used to the other medicine and it wasn't working. this is working longer, and better. also the only true muscle relaxer is valium, I have terrible TMJ (cant even eat grapes some times, the joint is trashed from bruxism when my neck joints started getting out of line) and all the muscle relaxers don't work - they even say they don't actually relax the muscles. careful of using the ambien, it will work, but if you stop you won't sleep for months. I find lots of Benadryl (taper up with the childrens liquid until your dose really helps you at least get to bed) and try to get valium or one of the other stronger ones. for 1 hour I actually feel normal when I take it - all that pain I tend to tense up and feel very anxious, and I don't realize how bad I get until I take a valium at night. even with tons of pain medicine I still find a need to take 800 mg advil, usually doesn't help but on the rare chances that it will, I keep trying. I had no luck with Neurontin. my neck accident was when I was 23, and I am now 49, so I have been in pain for most of my life and it sucks. unfortunately just not doing anything but sitting in a chair that supports my head is the only thing that helps. I had to cancel all my magazines in 2007, I had to stop reading. if your neck is an issue, look into the Levo stand, I just got it last year and is GREAT. im using it right now, have the tablet up high at eye level, and have the wireless attachment for my surface tablet, and can keep the keyboard down low on my lap. I get so upset when I see people able to just put a tablet or laptop on a kitchen table and use it - even that tiny bit of looking down is what hurts. (I think the loss of curvature is what causes most of the pain now, but my issues are spinal and foriminal stenosis in many places, bony overgrowth at most all facet joints in my neck, and the uncovertabral joints, DDD in all my neck discs, one bulging disc is denting my spinal column. cannot open or close my mouth without terrible clicking as it slides in and out of the joint. also if you get headaches from all the neck issues, try phrenalin, its the only thing that helped with my migraines caused from the neck tension pain. its the same thing as fioricet, but without the caffeine. Good luck, and also try lots of different vitamins, like large amounts of vitamin D helps a bit, I am very low, but that might be a female problem. also b- complex. good luck and keep seeing doctors until you find one that can help you, if surgeries aren't really needed for something try and go without more, and find a good osteopath, oh and also a good full body massage especially with trigger point work around the shoulders really, really helps.
  • Hi Paul,
    I'm feeling your frustrations, but now you
    Literally have 100's of fellow sufferers! Keep on posting your feelings, as it is cathartic! Feel free to send me a PM and I'll be glad to hear you out! It's one day at a time....long as the day may be. I'll be thinking of you and other sufferers. Barbara
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