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This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock pain. I can’t sit at all. I stand majority of the day or lay on my right side. Started with tingling down both legs & arms. They put me on Cymbalta which did help. I had 7 MRI’s within 8 months. I do have some bulged discs but the Dr’s said no big deal, most people have them & they don’t cause this much pain. I do have scoliosis which I found out at my first urgent care visit from all of this. All the Dr’s say again that the scoliosis shouldn’t cause this pain.
Pain on left side of back & it feels very hard & sticks out more than my right side. The pain in hip started later. Lower back pain started first.
I’ve seen neurologists, rheumatologist, ortho, back surgeon, primary, PT, pain Dr, chiropractor & now doing decompression. I had a rhizotomy & steroid injection- neither worked. No meds they gave worked. I don’t want to be on pain meds. I was 52 when this all happened. Good shape, golfed, pickleball, worked out. Never felt like I hurt my back. One day it just started & never stopped. My life changed drastically & I was depressed & not sleeping. Dr & PA’s made me feel like it’s in my head & said I should talk to a therapist. I didn’t want to live anymore. The pain is constant everyday. I haven’t been able to do the things I love. I’m constantly researching myself because I know this is not in my head. The hip pain started more recently & sometimes I can hardly walk. I had muscle atrophy from not doing anything for a year. PT did help me to get some strength back. I’m still working on that but I’m slowly working out on machines & walking a few times a week (2.8 miles). I can barely walk up the stairs after.
I found the person that helped me the most was my chiropractor. I have more mobility now but pain is bad.
I worry I’m making things worse by the walking. How do Dr’s not know what is wrong? We’ve spent so much money on my health stuff & meds.
I can’t live the rest of my life like this but I don’t know where to go from here.
I hope you find answers for your pain!
Replies to "This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock..."
Hello, I am sorry to hear of your debilitating pain. I was experiencing this 2 yrs ago and my pain management Dr. sent me to a Pelvic Floor specialist who expertly decided after some strange physical tests that I had a pinched nerve in my sacral area that no one but a pelvic floor specialist would recognize. For 12 weeks she did her very specialized treatment including, exercises, stretching, cupping, needling, ultrasound, etc and I got absolute relief and havent had any problems since. It was a very mild, gradual experience where I didnt think it was really helping until one day I suddenly realized I didnt hurt and I didnt realize exactly when it stopped. It was a lifesaver even though it was a bit tedious to go to PT 2x week for 12 weeks but it worked. Best of luck to you.
I don't know if I am replying to just one person or this whole group but if you have MRI's of your sacrum and/or pelvic MRI look at the written reports and then at the actual images and see if you have Tarlov Cysts (also called perineural cysts or sacral nerve root cysts). They can appear anywhere along the spine but mostly in the sacrum. They are under-reported, ignored and misdiagnosed for many people. They can cause pain when sitting, standing too long and when laying flat on your back, buttock pain, tingling and numbness in legs and feet even headaches. They can cause a lot of female issues and problems with urinating and bowel issues. FIRST you need to see if you have them.
If so, here is a Facebook site with thousands of patients talking about their experiences with them and their surgery etc It's a private group so you have to join to read posts:
https://www.facebook.com/groups/cystersandmysters/
Very few surgeons will operate on them because they are the ballooning of a nerve root so they cannot simply be removed.
Here are two top rated surgeons who do operate on them:
Dr. Rudolph Schrot from CA
Dr. Frank Feigenbaum from TX
https://www.frankfeigenbaum.com/
Been there - so sorry. Any glut tears? My experience. Muscle atrophy disease / perhaps a variant dominate gene for adult onset M Dystrophy- great - but no cure. Control pain as much as possible. Prednisone helps Cymbalta helps for sure. Best of luck!
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I also have terrible buttock and hip, back pain. Supposedly I was told it was a pinched nerve. Went and had that taken care of but still have the pain. I sit on ice pack then do what I have to do. It’s the only thing that helps. It is a good pain killer. I agree it is frustrating, but what choice do we have?