Undiagnosed and rare conditions
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Low back spasms, daily for 10+ yr, nothing on MRI or Xray

gingerweasleygingerweasley Member Posts: 1 Listener
Hi there! Figured I would give this a  shot since no doctor has been able to help.

About 11 years ago, I got a back spasm that has never gone away. It's mostly focused on my left side. Most of the time it's just a sharp pain that I feel whenever I move the slightest bit left to right or front to back. Walking doesn't hurt, running doesn't hurt, but bending over or sneezing hurts a ton. Occasionally, it will lay me up in bed when it's really acting up, but for the most part I just live with it and modify my movements around it. 

MRIs and x-rays show absolutely nothing. I've seen chiropractors, orthopedists, pain management specialists, physical therapists, accupuncturists, rheumatologists, and regular doctors over the years. I tried getting injections in my spine and sacroiliac joint last summer. I tried a series of prolotherapy shots. I tried narcotic pain meds, antiinflammatories, arthritis meds, muscle relaxers often in the first couple of years but nothing really helped. I stopped accepting pill prescriptions years ago because they didn't work and I was afraid of addictions/habit-forming. 

It's to the point where I don't even want to bother with doctors anymore, but I know there's something wrong with me, so I just keep trying. 

Every test I get comes back as showing me to be a perfectly healthy 31 year old... For context, I'm 31, female, never had a baby, from New York. I'm currently 175lb, but my weight has ranged from 130 to 190 over the course of the past 10 years. My weight and activity levels don't seem affect the pain level.

Has anyone else experienced this? Any suggestions? I spent all of my 20s in pain... I'd like to improve for my 30s and beyond. 

Thank you!


  • Ami2301Ami2301 Community Co-Production Group Posts: 7,747 Disability Gamechanger
    Hi @gingerweasley and welcome to the community! I'm sorry to hear you've had this battle for so long, it is incredibly frustrating when all these tests are carried out, medications tried, etc to no avail. I just would like to point out that we are not medical professionals and that we not permitted to give medical advice. However, we are more than happy to share our experiences.

    Regarding MRI's, have you had a spinal MRI? The reason I ask is because when different consultants and specialists didn't know what was going on with me, they requested a spinal MRI (not just a head MRI) which resulted in finding the answers.

    I really hope you do find out soon :)
    Disability Gamechanger - 2019
  • Tori_ScopeTori_Scope Posts: 5,020

    Scope community team

    Welcome to the community @gingerweasley :) I can imagine it must be really frustrating and disheartening not to know what might be causing you this pain. I'm afraid I'm unsure about what it could be, but I hope that you see Ami's comment. 
    Online Community Coordinator, she/her

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  • LiamWarrenLiamWarren Member Posts: 10 Listener
    I had a similar problem that took 5 years to diagnose. Eventually I went private and had some electric shock tests. I was finally diagnosed with Peripheral Neuropathy.
  • 11190821119082 Posts: 258 Member
     sorry to hear that Liam Warren 
  • SupernanmaSupernanma Member Posts: 40 Connected
    Back in 1985 I lost the ability to go up stairs, my left leg just wouldn't work,. Then it went into back pain in my left side. My doctors just diagnosed a back spasm and for bed rest back then. An xray showed nothing at all. Eventually it got to the point that if I moved, the pain was so sharp, I couldn't even breath properly. Luckily I saw a locum and she sent me for an MRI and asked them to inject a dye into me to show up any problems. There it was a massive slipped disc S5/S4 they removed it in 1999, then in 2000 I experienced the same, turned out that the removal and degeneration of S5/S4 left a weakness which eventually led to removal of discs down to S1 and it's fused. I have permanent nerve damage in my left leg and on morphine. I wish I had known about the dye and MRI a long time before. Maybe ask for another MRI with the dye in it. Don't leave it. Also check the bottom of your shoes. The reason I say that is because spinal problems tend to leave the leg shorter and extra wear and tear on the heel of the shoe. If that's there demand another. Hope that helps again. 
  • 11190821119082 Posts: 258 Member
    I have got a sensory visual Impairment and My name is Masuma as your talking buddy Liam Warren I am able to help you out here 
  • 11190821119082 Posts: 258 Member
    I am sorry to hear about your struggles  Supernanma 
  • SupernanmaSupernanma Member Posts: 40 Connected
    It's not a problem I live with it, it's part of who I am. I just wouldn't want it to continue as long as mine did. I hope the info might help you to get a diagnosis. Mine was caused purely from wear and tear being a child carer from 5 years old... Hence having mental health problems now... Life huh? You gave to just accept and move on, which sounds everso easy but it isn't. 😊 Take care. I'm not a doctor but my experience may trigger something in you @gingerweasley
  • 11190821119082 Posts: 258 Member
  • JenFJenF Member Posts: 9 Listener
    Just a message of sympathy, and second the advice not to give up. 
  • Jean EveleighJean Eveleigh Member Posts: 134 Pioneering
    you said you have had X-rays and MRI's but would it be worth having a CT scan to check inside the structures of the organs, muscles, tendons and ovaries on your bad side to see if there is an issue with any of them? 
  • AwesomelorenzoAwesomelorenzo Member Posts: 109 Connected
    I don't want to sound rude, but could it be in your head?
    I had knee pain for 3 years and I couldn't do anything, but then I watched a programme about thinking and I told myself my knee was fine, and it never hurt again.
  • Tori_ScopeTori_Scope Posts: 5,020

    Scope community team

    Hi @gingerweasley :) I was just wondering how you were getting on? Have there been any developments? 
    Online Community Coordinator, she/her

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