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Chronic back/hip/leg pain- needing help w/ diagnosis

I am a new member to this site so first of all I want to tell everyone hello. I have been in chronic hip/leg/back pain for 5 years and I am hoping to find someone who has my similar symptoms. I began having lower back and hip/leg pain so I went to an orthopedic surgeon who did an MRI which showed slight L5/S1 disc narrowing. I was sent to PT and given the usual meds and told to come back if it worsens. A couple of months later I was in severe pain from my lower back and I finally found a doctor who ordered a discogram since the MRI was inconclusive which showed my disc was totally collapsed. He did a Myleogram for my leg pain which came back negative for nerve root impengment so he told me a spine fusion would help my back pain but not my leg pain. He was right, my leg pain and mobility got progessively worse. I had to start using a cane and gradually the distance I could walk became shorter and shorter. I had 3 more MRI's , 2 Myleograms, and an EMG/NCV in the following years after the surgery which all came out negative. Meanwhile my ability to walk worsened to the point that I was shuffling instead of walking. My last orthopedic surgeon ordered me a power chair and wrote a letter for me to get permanent disability. I have been confined to a wheelchair for over a year . The worse part is my inability to sit on my left side, I have to lay over on my right side. I am mainly confined to my home because of not being able to sit, I cannot go to the movies, shop, visit friends, etc. . I found a doctor in Nebraska (850 miles away) who operates on "Trigger Points" which are highly sensitive bundles of muscle under the skin . There are many specialists who treat tp's with injections and massages but he is the only doctor who actually operates on a trigger point. After much research and being desperate for a cure I decided to try him. I have numerous sensitive areas on my back and hip so he began injecting each area with numbing medicine to try to evoke my pain and to see if it would help my mobility. He found one area near the spine in my lower back, which he injected.. He told me to walk down the hall ( since I came in a wheelchair I thought he was crazy). I took one step and then another, before I knew it I was jogging down the hall with no pain! I was amazed, how could a numbing shot make me not only walk but run? The effect of the shot lasted for about a hour, I could walk, run and even sit without pain. The doctor took me to surgery and looked under the skin in that area but he couldn't see anything that would be causing my pain . After the failed surgery he gave me many more diagnostic injections and found at leat 8 more trigger points ( all in a line from my lower abdomen to my spine) in which I was able to walk a short distance . The doctor said I had too many trigger points and he was hesitant to take me back to surgery because he was confused and had never seen this in a patient before. I went back home with the same pain and feeling very discouraged. That was abount 8 months ago and since then I have reseached everything I could on the Web and in medical books. I contacted The Mayo Clinic in Minnesota but after looking at my negative MRI they said they couldn't see anything they could help me with. The last Neurosurgeon I saw diagnosed me with RSD, which I am having trouble accepting. RSD has many symptoms including sweating, temperature changes in the involved area , burning and many more. The only symptom I have is severe, chronic pain.
I have pretty much tried every procedure, injection, medicine, etc. in the book to no avail. I am looking for someone out there that has the same symptoms as me (and if you have a diagnosis too that would be great!). It would be nice to know that I'm not the only person out there going through these very confusing and painful symptoms. Even if you don't have my symptoms, some words of encouragment would be very uplifting. Thank you for bearing with me till the end of this long post!


  • I was similar to your experiences. Until I found a Doc that tested me for SI joint dysfunction. That was the problem, I received a fixation surgery and the pain is still with me, but I am better than I was. I won't ever be like before the rear end collision..but I can get by.

    Do some research on Sacrolitis/Sacroiliac joint dysfunction, maybe you'll see something to investigate and be checked for.
  • Hi Happycamper,

    So sorry about your pain. Have you read The Trigger Point Therapy Workbook by Davies? If not, it could help you out along with a "theracane" or "back buddy"
    to do some self massage to those trigger areas. It has helped me a great deal.

    Take care
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