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26 year old with SI pain now for almost 4 years! Need help

Hi everyone,

I'm new to this forum and would love to get some advice because I have no idea what to do anymore.  

When I was 22 years old and graduated from college, I started my first job as a Big 4 auditor in New York.  For the first time in my life I was sitting for very long periods of time, sometimes up to 15 hours in 1 day.  About a few months in I began having back pain.  The pain was dull and achy and in my lower back area to be exact but the pain felt like it was in my buttock.  I constantly had to get up and stretch in weird positions so that my back/butt would be relieved. I would get this dull ache intermittently.  Sometimes when I would sit (with bad posture, which was usually the case) and sometimes even when I was standing during meetings.

I didn't know what to do. I purchased a back support on my chair to be more ergonomic and started getting massages regularly.  The only thing that helps to give me some relief is pressure to the butt.  Either a deep massage or I even resort to hitting myself in the butt hard when I'm alone in private. It's very weird but helps.

Last summer I decided enough was enough after 3 years and went to see an orthopedic surgeon.  He did x rays of my pelvis and then ordered a pelvic MRI. Both were normal. I swallowed it like a bitter pill and went on with my life.  A few weeks later on the way to work on the train, the dull, deep, butt ache returned and I decided to get a massage.  As the massage therapist was massaging my pain area she felt what she described as a knot.  She said there was one on both sides of my lower back though the one on my left side was way bigger.  I honestly can't even feel anything on my right side but DEFINITELY felt the one on my left side.  It feels like the size of a golf ball but it can't be seen with the naked eye. I have to press down and palpate it though it helps when I bend forward, then you can definitely feel it.

I got worried and called my MRI lab to double check that the Pelvic MRI didn't show any type of mass.  They double checked again and sent me a second report which stated again, no soft tissue mass or osseous neoplasms or necrosis were visible.  All fine.  

I was still dumbfounded so I went back to visit my Orthopedic surgeon.  He felt the lump and said it wasn't a muscle knot.  He said it was just a clump of fat and scar tissue.  

7 months later I decided to see a second orthopedic spine surgeon who sent me for another MRI, this time a lumbar spine MRI.  Again it showed absolutely no abnormalities and I asked him to feel the lump again.  No concerns.

So now I've had this deep,/achy intermittent, SI joint pain for 4 years, normal pelvic x ray, normal pelvic MRI, normal lumbar spine MRI.  The only thing that helps is massage or pressure of some sort.  

I'm now seeing a pain specialist who used to be an orthopedic surgeon and he told me I just need to be active and exercise since I don't much anymore.  Mind you, I'm 6'1 and weigh 175 lbs so I'm not even close to overweight and am in fairly decent shape. I used to run track and play tennis.

Is this normal? Has anyone else experienced this? I feel like I'm way too young for this.  I also still have no idea what that lumpy tissue I feel on my left SI side is.  I'm a huge hypochondriac so I always assume that it's deadly.  All I see when I search on google for the past few years are bone tumors.

Would a pelvic and lumbar spine MRI show the SI joint well?

I constantly look at my MRI reports for both MRIs as well as all of the images (there's many and I have access to all of them). This fear is driving me crazy to be honest.
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Comments

  • MetalneckMetalneck The Island of Misfit toysPosts: 410
    edited 07/23/2019 - 1:08 PM
    david- Welcome to Veritas Health Forum,

    very frustrating experience to go through all of that - and still have no definitive diagnosis.  i am going a different direction than usual and ask - did you see you g.p. also and what did he/she think??  any other pain - numbness - weakness - in your legs? feet? groin area?  any other knots? lab work done?

    lots of si information can be found here:
    https://www.spine-health.com/seek?query=si+pain

    let us know how you are doing??

    regards,

    mn


  • Hi MN,

    Thanks for your response!

    I've only been to specialists for this problem. Orthopedic surgeons, pain management MD.

    I did have attempts with chiropractors and physical therapy as well.

    No numbness. My groin, feet, legs are normal. No lab work done. It's just my buttock/glute area (intermittent deep ache) which to me signals the SI area. Again, pressure on the area actually feels fantastic.

    No other lumps that I can find other than the one I feel in my left SI area. Really feels like it's the size of a golf ball.

    I asked a surgical orthopedic surgeon on the Healthtap app and he said it sounds like a fibro lipomatous mass which he claimed is common in the sacral junction area and usually doesn't show up on MRI.

    He recommended something called prp injections. Any clue what that's like?

    Im worried that this is something potentially serious. Would the pelvic MRI and lumbar spine MRI be sufficient? I'm worried that an SI joint MRI specifically might have been necessary and that the other mris might not have picked up the area in question as well.

    Thanks!!
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  • Hi
    I am sorry to hear you have been dealing with the pain you have plus no answers to all your questions. We are not able to diagnose you since we are not doctor's.
    I have the same problems for now going on three years and the pain has stripped me of my life and very little relief at this point. My symptoms are pain in Si joint area very tender when pressing in the area of the joint. Pain in left buttocks, hip, groin, waist and down back of leg to knee with burning and extremely tender to the touch. For me sitting is the worst to try to find any position sleeping etc. is frustrating. This web-site has excellent videos and information regarding this health issue so do your research. Also keeping a journal of what causes the pain, when a detailed journal it can be another tool in helping doctors figure out what is going on.
    You got some great suggestions from the other member especially using the information made available here on this web-site. So in the upper right hand corner type in Si joint and educate your self. 
    The Si joint has only been recolonized/accepted in the past few years as a real problem and I have found it difficult to fiind therapist and/or Doctors with experience and expertise in this area so do a ton of research check out their qualifications and if possible reviews. I ask them and do a review you have that right to ask about their background like where they got their education in si joint. If you are not getting the answers you want or they have no plan find another one.
    I would like to know how and who diagnosed you with Si joint as the problem? What exactly testing did they do I mean any manual testing like moving your body if you read in the information there are several movements that they can do to pinpoint it is the Si joint in fact or something in that area. MRI's, x-rays etc. will not always find the problems that is a quote from one of the top surgeons here in Utah. Have you had any injections into the Si joint area? It is one of the top tools used to find problems if you get relief then it pretty much says the Si joint is the problem. I had several of them with  no relief it was my insisting on the manual tests that pinpointed it was my Si joint. 
    Have they measured your legs to see if one is longer than the other one that can cause an imbalance and throw the whole area out of whack creating a strain on the pelvic/Si joint area.
    Sorry for ranting this subject has been a fight for me to find answers and to get relief so whatever I can do to help others I am grateful.
    The Fibrolipomatoic mass is it tender to touch or get hot? This is just what I was told if it grows, hurts, gets hot, tender to touch it should have a biopsy and is not that big a deal to be removed. That was just his opinion so your doctor is who you should listen to but I would get a second opinion on that one.
    So that is your Pain specialist plan to exercise and keep active? No therapy and no exact exercises to do just random?
    There are exercises that are not to be done with Si joint problems period they will only aggravate the problem making it worse. So has it been suggested to you to do some kind of swimming exercise? 
    Just trying to help you sorry for ranting on but please keep us posted and any time you want to talk you can Pm me and I will try to help you.
    You have came to the right place there is excellent info here and wonderful caring helpful people here so hang in 
    Sherri
  • Sherri,

    Hi.  Thanks for your input, I really do appreciate your time.  

    I'm sorry that you are suffering as well.  Your pain is similar to what I described for myself? No one diagnosed me with an SI joint problem. I diagnosed myself after seeing a few doctors and I can tell where the pain is coming from.  I've had a Pelvic MRI, Lumbar Spine MRI, and a Pelvic X-Ray. The pelvic exams were done last summer (Summer 2015) and the Lumbar Spine MRI was done in February 2016.  

    I've had no injections. I've been given some anti inflamatories and told to start exercising and building up my core strength since I was told that I have weak posture/muscles for someone my age. I don't believe they measured my legs, that's a good idea though.

    Regarding the mass I feel in my left lower back in my (self diagnosed) SI joint area, I can't tell if it's hot.  In terms of tenderness, I can definitely feel it if I push on it, again seems to be the size of a golf ball.  It's been touched by a few different orthopedic surgeons and none of them are concerned.  Though I'm wondering why it doesn't show up on my MRIs?  One of my worries is that the SI Joint didn't show well on my Pelvic MRI or Lumbar Spine MRI.  I realized that there is a specific SI Joint MRI available.  But I'm wondering why the Pelvic MRI wouldn't have shown it, if that is in fact the case?

    None of the doctors want to remove it, give me injections, or acknowledge that this is anything to be concerned about.

    I'm a pretty big hypochondriac and am always afraid that this is serious because every time I do a search of this on google I always get websites dealing with bone tumors which really scares the hell out of me.

    Yes, it's been recommended that I begin swimming more. 

    Let me know your thoughts, I hope that you feel better as well.

    David

  • Sorry to bump, just wanted to see if anyone had any ideas based on my previous post.

    Thanks!

    David
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  • Hi
    I read your last post again and you mentioned a MRI for finding problems with the SI joint. That is news to me I am not aware of any specific MRI that will find it and like I said the MRI, x-rays etc. do not always find the problem and also there is so much in that area that can cause pain to be referred etc. I suggested you read the info here on Spine Health it refers to the manual tests that are available to test for Si joint. When I suggested the doctor do those on me the pain was intense and he then agreed with me and that was after I had had several injections with not relief. If you believe it is the Si joint become as knowledgeable as you can so you can discuss it with your doctor and keep a journal of what makes it worse or what helps. Try to be patient it is a difficult thing for doctors to diagnose but be persistent in getting answers if it means getting a new doctor do so. 
    I get a lump also and with the one by my elbow I was told the same thing plus inflammation can cause them. Try not to think it is cancer there are a lot of other things it can be. Tell your doctor it is upsetting you and ask if they can take a biopsy that was a option given to me. 
    Swimming is excellent it doesn't put pressure on your joints etc. and it sure was helping me I had to stop for other health problems. The core muscles are critical too do you have a therapist who works with and shows you the correct ones you need to be doing in order not to hurt yourself? We have to do what we can to improve our health and follow the doctors directions unless of course you think it will harm you. Try to be positive and not think about the worst I know it is hard but stress only makes matters worse. 
    Oh also have you read the blend on here it has some helpful ideas on controlling pain.
    wish you the best Sherri
  • Hi Sherri,

    Thanks. I made an appointment for January 12th with an orthopedic spinal surgeon to take a look at my two MRIs and their respective report and will 100% have him give me his opinion on the lump. 

    Hoping he will tell me it's nothing to worry about.

    David
  • David,

    I have the same issue as you plus I have pain going down my leg and knee.  I just had lumbar and pelvis MRI and the lumbar came back normal but the doctor said there is tons of inflammation in the SI Joint area.  He sent me to pain management doctor who I will see this Friday.  Have been having this pain for 9 months now.  I am very athletic and in good shape but have not been able to play soccer (which I love to do) since this happened.  Sometimes I lose my leg due to pain.  What helps me a little i stretching and massage but it is short lived.  I noticed that pure magnesium oil applied directly to my buttocks before I go to sleep helps, seems like it relaxes the muscle.  I came up with a stretching and core strengthening routing that I do each morning and night, it helps a little but not to the point where I am plain free.  I am 37 and always worked out and played sports but I think my pain started when I started playing on a hard surface last year in April.  I can share the workout plan with you if you would like, I just don't know how to do it on here.  Does anyone know?

    Take care.

    Ranger 
  • SavageSavage United StatesPosts: 4,299

    Remimder......there are no medical professionals on discussion forums.
    No one is qualified to give medical advice.
    Any kind of exercise, work out plan, may be beneficial to some but may be harmful to another.

    Please check with your doctor before beginning any kind of exercising as he knows your full medical history and care for your generalized well being.

    Thank you.......
  • edited 03/09/2017 - 12:32 PM
    hi david did you find out what was causing your pain? did you look at pinformus syndrome? dr [edit] who treats my cervical
    pain and rsd had an article published in a prestigious journal about that
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