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Losing my last bit of motivation (long and ranting)

I'm new to this forum. I have been dealing with severe chronic pain from a herniated disk for about 5 years now. I've had several epidural steroid injections over the years that provided some relief but the pain returns within 1-2 months. Right now the sciatic pain is excruciating like never before. I am using a cane as I am unable to put any weight on my right leg. The pain in my hip, buttocks and lower back is so intense I see stars, my peripheral vision narrows so that I see only a small pinpoint and I feel I may pass out. I most recently went to the hospital emergency for pain as well as an acute issue with my right foot. I was unable to move my toes. The doctor seemed sympathetic but did not seem to be overly concerned. I had very little reflexes in my right leg when tested. He gave me a fentanyl dose sublingual and it did absolutely nothing, didn't even feel light headed. This was followed by a shot of morphine immediately after. No effect at all. I walked out, or I should say, limped out of the hospital probably more sober than some of the staff. I should mention that I have had numerous surgeries in my life for unrelated health issues. I've had 2 children, a complete hysterectomy at 30 yrs old for endometriosis (I am currently 46),  more than 15 exploratory surgeries, gall bladder removed last year. Any kind of post surgery pain Meds have never touched my pain. Ever. Not codeine, Demerol, percocets, morphine etc. I don't know why or what's wrong with me. The doctors and nurses don't believe me. My GP has me on gabapentin. Two 300 mg pills 4 times a day. They don't work. I have taken 6 at a time and it only makes me off balance and gives me double vision. I have taken mouthfuls of ibuprofen, Tylenol etc. There is no relief from this pain. Two days ago my GP gave me a shot of steroid and anesthetic deep in the muscles in my lower back and the pain has actually increased. I am scheduled for the epidural injections again in 2 1/2 weeks with my neurosurgeon. What complicates my life and has completely crushed my soul is that I have been off work now for 1 year due to a life long condition called Narcolepsy with Cataplexy. I have exhausted all the Meds available to me and my sleep specialist is unsure if I will ever be able to work again. I was a very independent woman. It's been a rough 3 years for me and prior to leaving work I thought my life had finally turned a positive direction. 18 months ago my husband took his own life due to chronic pain with his own spinal issues. He had a fusion of his cervical disks which ended up causing him more severe nerve pain. The doctors pushed Lyrica on him which had horrible effects. He was off work from a career that he loved. He lost 50% of his hearing from that drug, extreme memory problems, extreme mood changes, insomnia, hallucinations. He attempted suicide twice and each time I begged then to wean him off as I new there were suicide warnings with that drug. They just increased the dose. The 3rd time he was ultimately successful. I sold our house and bought a lovely condo which I may lose now as my disability income will drop further now that I am switched to long term benefits. The wait for the pain clinic in my province is 2 years for a consult. My GP has prescribed Lyrica  which sits in my junk drawer for obvious reason. It's poison. I have met a wonderful man who accepts my Narcolepsy. He is very supportive with my current pain issue but I did not suffer from it when we first met. I feel so bad that I have burdened him with this problem. He did not sign up for a girlfriend who can barely walk, is moaning, groaning and often screaming and crying in pain. I am so exhausted generally with the Narcolepsy and today I am bed ridden with the addition of excruciating pain. Right now I am a useless human being. I am a burden on my family and friends and I can't see that the situation will improve ever. I have had so much loss over the past 3 years. Now I may lose my home and a man I love dearly as I fear he will stand by me out of obligation. How does one find purpose with nothing left to give? I'm just so very tired. I so very much want to climb out of this black hole. Sorry for the rant and the story that's all over the place. I don't think clearly with the Narcolepsy quite often. 


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Comments

  • LizLiz Posts: 9,768
    edited 07/23/2016 - 4:22 AM
    hello kiki
    i am sorry to hear your story you have are dealing with a lot, i hope these links can be helpful to you
    please click on the link
    welcome to spine-health

    4 tips to help cope with chronic pain and depression
    treating depression and chronic pain

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Ellen625EEllen625 New Jersey, USPosts: 757
    Wow. I don't even know what to say. You have been through so much. I can't believe you have to wait two years for a consult. You've come to the right place to vent. 
    I wish you well.
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  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,510

    Kiki50s

    Your story is much clearer an well written than you give yourself credit for.  I am so sorry about the loss of your husband.  When I started Lyrical, I gave my wife clear instructions that she was to take control if I lost control - I was very nervous about taking it.  Thank goodness that I could tell that it was a problem, and worked with my doctor to get off of it.

    While you wait for the pain clinic, are there any other options?  I am thinking a neurosurgeon or orthopedic surgeon with a spine specialty.

    Bruce

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

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