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Symptoms I have are very similar to SI

Hello,

I have  tingling and pain in my left buttock and down the back and outer thigh when sitting or lying down. Both buttocks hurt when I sit for too long. My lower back hurts and the left side is painful when I press with my fingers, on the sacro area. Sometimes the pain is also on the front hip, near the groin area. The pain goes away when standing or walking. I had this pain for over a year now which started from sitting in a n office chair for more than 8 hours a day with very limited getting up. I have been diagnosed with piriformis syndrome and hip bursitis but MRI did not reveal these conditions. I was injected cortisone in the piriformis muscle but it didn’t help at all! I am consumed with this pain which, while is not excruciating, it’s affecting me physically and emotionally as I dread sitting down and going to bed. 

I  am very good at stretching and  practice gentle yoga. I also received some PT. It seems that the pain and tingling is now moving lower on the back of the leg and the sole of my foot. Medication is not helping much. I no longer enjoy reading or watching TV propped on a bed or couch!

Did anyone go through all this before being diagnosed with SI? Should I see an orthopedist? I would appreciate any insight provided. ☺️ Thank you!  

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Comments

  • LizLiz Posts: 9,720

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • robmjrrobmj Posts: 46
    edited 05/14/2018 - 12:22 AM

    Hi N - I am sorry for your pain! All of your symptoms seem to be related to SI joint dysfunction. The best way to get diagnosed is a visit to a pain management doctor who will do in-office manipulations and possibly an injection to test for localized relief from the pain. If SI is diagnosed, there is help - epidural steroid injections and radio frequency ablations helped me for many years. I'm not a doctor, but your symptoms mimic mine exactly. Your pain management doctor will likely test for RA factors (rheumatoid arthritis), including SED rate, CRP, ANA and the HLA-B27 gene. Ask for these tests because they can help determine treatment. I also use a TENS machine (you can buy them with guidance from your doctor online), an SI belt when walking distances and OTC heating rubs to take the edge off of the pain at night. I hope you find some relief soon. Take care -

    Rj

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  • Thank you  Rj. I will ask for a referral to a pain management doctor or an orthopedist. 

    The MRI shows a enchondroma or subcortical cyst on the femoral head on the side that hurts and I am wondering if this is the cause of the pain. I will see the doctor in a few days. I apologize for not responding sooner but these last few days have been difficult.

    Did you experience pain when walking? I have no problem walking or standing but as soon as I sit down on my couch or bed, I feel that there is a lump or something near my sit bones and the pain moves to the side of my hip and down the back of my leg. I am glad you are managing your pain well. Take care.

    NP

  • Hi NP - I am not managing my pain as well as I wish I could. Just trying to do what gets me through with the ideas I mentioned above. In terms of walking vs. sitting - YES you are describing my pain exactly. If I could walk/stand every minute (obviously impossible :) my life would be so much better. And YES, I feel like there's a half-baseball near my left SI joint when I sit down (where I've had all of my problems). I am hopeful for you and wishing you all the best. I don't want to freak you out but I've been dealing with this for 23 years and also had a piriformis injection (no help) recently. Bedtime for me is very difficult as well. Please know I have had help in the past with SI caudal Epidural Steroid Injections (ESIs) and the RFAs I mentioned above.

    Please also note that not one X-ray, MRI or CT scan has successfully "diagnosed" my pain. Please know it's rare for these to pick up SI joint syndrome (which also manifests in the hip and even down the leg, so it's often confused initially with lumbar problems). Just know you are NOT CRAZY when the tests come back negative. It took me a long time to realize this is actually good news because I just wanted something to make sense. I hope your cysts have something to do with your pain (so there's a relatively fast solution). If not, please know there is relief for you in sight. Take care of yourself!

    Robyn
    PS - I have a wonderful life - husband of 31 years, three grown children, one new (1-month old) granddaughter, lots of friends and family. You just have to accept "new normals" sometimes. I didn't want to be discouraging to you!


  • Hello Robin,

    I am sorry that you have suffered this pain for so many years. However, it seems that you have not let the pain slow you down or negatively impact your outlook on life. You are awesome! I should focus on those things you mention; I have a good life too and a husband of 30 years, two grown children and I look forward to grandchildren and all the wonderful things I know will come with age. 

    This pain is consuming because it interferes with my life so much. I can no longer sit down comfortably. My left buttock is tingling and my butt area hurts as I type this propped on my bed :D 

     Do your symptoms feel like sciatica sometimes? Mine do, which confuses me even more!  It is also annoying that my doctor says that there is nothing wrong with my hip or low back as both MRI's were normal, except for the cyst or tumor. You have opened my eyes and now I feel that there is hope! I will ask for a referral and hope that the specialist can understand my pain.

     An MRI of my shoulder came back showing rotator cuff tears for which I will have surgery in a few months as I want to get to the bottom of this before the surgery. It would be really hard for me to  to sit or lay down for days after the surgery with this hip pain!

    Thank you for your reassurance and advice, and congratulations on your new granddaughter!!

    Best wishes,

    Norma


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  • Hi Norma - just checking in to see how you are doing? Focusing on the positive is not always easy (as you know). It's the only thing that makes me feel better sometimes. I told my husband many years ago I was sorry he married "a lemon," when it comes to the pain/health part of me. He protested then and is still here! What a blessing - take care and let me know how your shoulder surgery went. I tore my left RC and labrum but didn't have surgery because injections worked for me (luckily). Wishing  you the best -

    Robyn

  • Hi again Norma - I forgot to answer your question. YES - absolutely feels like sciatica at times, especially when I lay down at night for bed and, of course, sitting. Right now in fact, the top of my left foot is tingling and feels "sunburned," but my X-rays, MRIs, CT scans show nothing beyond degenerative disc disease, which most of us have in some format due to age (though we are NOT old). :) Take care.

    Robyn


  • Hello Robyn,

    I am so sorry I hadn't seen your reply! I stopped checking right before summer as my low back and hip pain became worse. I also had surgery in October for rotator cuff tendon repair. 

    I hope you are doing great! I had SI joint cortisone injections yesterday and haven't seen any difference yet. I am hoping for the best. I had to wait until I was out of the shoulder sling to get the injections so I have been in pain all this time while I also recover from my shoulder surgery! 

    Wishing you Happy Holidays,

    Norma

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