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Undiagnosed pain in hip and leg

hello everyone,

Am new to the site. It's been more than a year since I've become disabled and I live in pain 24/7. I have undiagnosed pain in my right leg. If I stand still for only a few minutes the pain makes me collapse (and I have a high pain threshold). My neurosurgeon and the pain clinic are at a loss about what is causing it. Sciatica has been rolled out, there is no disc touching my spinal cord. They have done a normal MRI, a standing one, faucet joint injections in my lower back, a radioactive scan, xrays and still nothing. The did a scan which highlights areas of pain and my right hip and leg flair bright red. They suspect it is originating from my spine or lower back, the latter being exceptional weak. I have scoliosis for which I have had 3 surgeries with the final one removing the rods. I am at my wits end. Lying down is the most comfortable, then walking, the sitting and the standing. I am on a amount of pain meds which barely touches the pain. I have see a physio therapist who tried acupuncture and cupping, a chiropractor but still no relief. I am on the waiting list for a spinal cord modulator which is last chance saloon to reduce the pain but it is not a cure.

i don't know where to turn anymore. I've been bedbound for the last 2 days as the pain has been so bad I woke up in the middle of the night screaming out in pain and crying out for help. My husband and I would love to start a family but I can barely get through the day and if I wanted to get pregnant it would mean coming off all my meds which my husband doesn't want as he knows my life will be a living hell. He is a good man, kind, supportive and I'm the luckiest woman alive for having him by my side but he struggles seeing me in lain as there is literally nothing he can do but hold my hand, stroke my hair and wipe the tears from my face when things get too much. 

I just don't know what to do anymore and that is how I ended on this forum, with the smallest glimmer of hope anyone may be going through the same thing or has any ideas. 
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Comments

  • Hello Dutchbunny
    Welcome to Spine-Health!
    You are entering into a world wide family of pain and,suffering...and answers.

    ,its not all doom,and gloom,many here have been through the pains and as with you

    it sometimes is too much for a body to bear no matter how tough a person is.
    Come here to vent,ask questions and get some answers from the personal experiences of other members
    Hang in there !
    If you havent yet, please click the Welcome Message link below for more information about Spine Health
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • SavageSavage United StatesPosts: 7,385
    Hello....
    You mentioned you are on medications.
    Curious if  they are prescribed by the pain clinic?....a pain management doctor? And if you work with the same PM doctor?...or if it varies?

    If I'm understanding correctly, it seems good that your scan highlighting your pain was visible for doctors to see...to see your pain.
    That seems very validating to you and hopefully most motivating to your doctors.

    Have you had any other testing done to rule out other issues that may be causing this pain?
    Often times, ruling out issues is as important as finding the cause.

    You mentioned your pain causes you to collapse. When my pain first started, my leg, sometimes both legs, would give out on me and I would fall.
    My legs still cause me to ..like...genuflect is best way I found  to describe ... But now I use a cane, which usually prevents me from hitting the floor and eventually falling backwards.

    With my initial pain (severe, some of it ...difficult to explain, but like spasm or tightness) and falling, doctors did a brain scan and spinal tap to rule out MS.
    The spinal tap did rule out the MS.
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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  • Hi, sorry u a re going thou the pain. I 2 have been going throu for over a year now. I have had 2 mri and nothing on both them but mild facet arthropathy. But doing chores or bending, twisting puts me into bed about a few days,  so I say hang in there. 
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