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5 years of uncertainty and pain

AeonstarAAeonstar Posts: 1
edited 01/26/2016 - 9:14 PM in Chronic Pain
Hello, I'm 27 years old and just feel the need to tell my story and maybe get some advice on how to cope with everything.

4 years ago, I was diagnosed with aggressive AS, fibromyalgia, 2 bulging discs and neuropathy. Little did I know what this meant at the time, I just thought it would be something I would have to learn to live with. I had no idea what was in store for me.

4 years later, having tried over 30 medications, physical therapy, hydro therapy, consulting surgeons, yoga etc. Etc. I have come to believe I have little to no future. The pain seems to intensify every year. If it was just me, I could live with being bed ridden from pain 16-20 hours a day.

The only problem is my wife is now 8 months pregnant with our son. My quality of life is honestly nonexistent. I have no life any more. Yet I can't help but think I've missed something that would improve it. It is not just about me any more, I feel a strong urge to be there for my family. How am I supposed to do this when I can't function on even a simple level? What have any of you found that help with these conditions?


  • LizLiz Posts: 8,835
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • SavageSavage United StatesPosts: 7,385
    I was curious if you have been working with a pain management doctor?
    If not yet, having another pair of eyes on your issues never hurts.

    My primary tried to work with my pain two years before referring me to pain management/spine specialist.
    Best thing for me!

    He did variety of testing on me and was able to treat newly discovered issues and my symptoms....at that time and those that develop.
    Although I have limitations, PM Doctor treatment and monitoring my spine and symptoms does give me a better quality of life

    I know that managing the pain, with meds, treatments, and or other ...can be so trial and try again.
    The pain, the symptoms..including emotional symptoms can be somewhat of roller coaster.

    I believe in pain management for how it was/is lifesaver to me...and I believe in specialists.
    I don't think one doctor can know everything about everything.

    Please keep us posted.

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

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  • SavageSavage United StatesPosts: 7,385
    ...say, congrats on new addition to your family!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

  • I'm so sorry to hear of all the pain you're in! I don't have the same diagnoses as you, but have been in chronic unrelenting pain for 1 1/2 years with no relief. Sometimes the mental/emotional pain is so much worse than the physical pain. I am around your age as well. I agree with savage, pain management has been most helpful for me. Unfortunately, doctors have been unable to figure out the source of all my pain, but at least have given me non-narcotic meds (tramadol) that take my pain from a 7-8 to a 4-5. Also, icing helps me and hot baths. As far as the emotional side of things, I've been listening to meditations geared toward people in chronic pain, and it has helped me have a more positive perspective. I know that sounds kinda hippy dippy, but it helps me. Most importantly, know that you are not alone. And congrats on your baby boy!!!
    *Denise* Over 2 years of chronic pain in right hip, buttock, lower back, and sometimes leg/foot. No definitive diagnoses for my sciatica despite numerous MRI's. Underwent arthroscopic labral repair surgery in 12/2015 which did not alleviate any pain. Trying to live a normal life!
  • I have a lot of the same diagnosis as you. I have good and bad days....and the bad days are pretty awful. I understand where you are coming from. I recently returned to work as a waitress to finish school, and it has been hell. That being said, I refuse to allow this disease to control me. I have to push myself daily to do what most people take for granted...including walking sometimes. I do have to say tho, I feel way better than I did when I was laying in bed as much as yourself. It takes away your will and drive. If anything, please make sure you are getting out of bed and trying to live as much as your life as you can. You can do it. Will it be and endless fight? Yes. Is it worth it? Of course. These are the times you don't want to miss...you just have to keep fighting....

    Spinal Health Moderator 

    Retrolisthesis C4 of C5 and C5 of C6
    Spondylolthesis C5/C6
    Disc protrusions with Annular Tears C3/C4, C4/C5, and C5/C6
    Disc Material Compressing Spinal Cord C3/C4
    Severe Forminal Stenosis C5/C6
    Ankylosing Spondylitis 
    Annular Tears L3/L4 and L5/S1
    Enlarged Facet Joints/Facet Anthrosis L3/L4/L5
    PLIF with Rods, Cage, and Pedicle Screws-L4/L5
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  • hi I'm sorry to hear of the pan you have been in for so long
    I have had pain for a year and I was just diagnose with migraines. I had head neck and shoulder pain all day every day for a year. I became so depressed.

    I am 80 percent better now and have no migraine or constant headaches
    I had my cervical atlas bone realigned by an atlas proflilax trained specialist. She has helped many sf those with fibro and many other chronic pain issues. if this bone is out of alignment which it is in most people it can block the spinal cord crania nerve and cause many bad health issues.

    I would see if there was a specialist in your area and have a chat. it has given me my life back and cost only a small amount for getting life back. its just a hard massage on the back of the neck which allows the atlas to slide back into its right position.

    I hope you find your answer and keep fighting!!

    Rebcca : )

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