Sacro-iliac Joint Dysfunction or SIJD (one sided buttock pain) -- anyone?

Discussion in 'Fibromyalgia Main Forum' started by munch1958, May 4, 2011.

  1. munch1958

    munch1958 Member

    Hi -- I am just wondering if there is any connection to CFS & FM with sacro iliac joint disruption or dysfunction. Does anyone have low back pain or high buttock pain but just on one side? This is usually a sign of a very misunderstood and poorly diagnosed mechanical back problem.

    Just wondering?
  2. Lau

    Lau New Member

    Hi Munch - This has been an issue for me for many years. Sometimes one side sometimes both.
    I have never gotten a definitive answer if this is due to the FM/CFS. I seem to have re-occurring problems with 'itis's'-bursitis of hip, shoulder, ankle, knee,sacor. and iritis. I have made up my mind this year to find a doctor that will actually help me. Right now the rhemy just injects the offending area. Doesn't work out so well for me.

    It does seem to me that many people on this board have had the same issue, so there must be some connection. It seems to me that these conditions (FM &CFS/ME) are still not understood, even though the medical community likes to think they know everything.

    Sorry I wasn't really able to answer your question, but thought you might like to know others are in the same situation. If you find anything else out about this I would really appreciate your leting me know as I am at my wits end with this addition pain. I hope you can find relief from this very painful condition.

  3. Scapper

    Scapper New Member

    I've had this (one-side) for a year and 1/2, however, I've had CFS for 16 1/2.

    I don't think there is a correlation between the two, for me.

    I would like to find relief from this horrible pain though. I've yet to find anything.

  4. kellygirl

    kellygirl Member

    and not always happening on the same side! It could happen anytime, anyplace and It's a pain literally, in my butt!

    The dr. xrayed and said it is coming from the L2 disc. I believe the sciatica is the same, not sure, but when that acts up, I can't walk, so much pain.

    Sometimes it is in front of the leg, too. My hips are involved now, too. The dr. said arthritis with the FMS.

  5. munch1958

    munch1958 Member

    There are 286 people with butt pain posting over on a FB group:

    (removed by moderator)

    You all are welcome to come over to chat. Sorry that PH doesn't have a SIJD group. Maybe we can suggest one? I asked this question because I didn't think there was any correlation between CFS/ME, Lyme & FM myself. Since this is a large group here and some of the people over on FB have CFS, thryoid issues, etc. I thought I come back and post about this here to see if anyone else is interested.

    I recently found a phenomenal team in Gainsville, GA consisting of: an ortho surgeon, a rehab neurologist and a highly skilled and knowledgeable physical therapist. They have a very high success rate after doing about 4,000 patients with SIJD.

    3 weeks ago, I had surgery consisting of fusion on my left side (my pain side) where my total knee replacement is located which is opposite my shorter right leg and stuck SI joint side. The left or pain side of the SI joints was hypermobile and constantly flipping out. They did do an EMG to check where the pain signals were coming from before and during surgery.

    Plus the physical therapist came into the OR to adjust my pelvis BEFORE surgery to be sure I was 100% aligned before they did the procedure. This step is critical because many have been fused in the wrong position and then require another surgery to remove the hardware and reposition it. The intra-operative EMG monitoring is critical too because they should NOT be installing hardware without knowing they are near or on a nerve. The nerve fires a pain signal all the time which is not something that anyone wants.

    I urge you all to Google the new SI-Bone i-Fuse product. They do have a nurse that can connect you with docs in your area doing this procedure. I had a bunch of arthritis or degenerative joint changes and cysts inside both SI joints so I had fusion on the worst side. They typically just do fixation with screws which hold the sacrum in place and stop it from twisting getting rid of the hyper-mobility.

    Why this is so painful: the SI joint is partially dislocated, the ilium usually has an upslip, which is another way of saying one hip is going one way and the other hip is going the other way -- rotating in a painful way. If we didn't have an already high pain tolerance walking around with "cross eyed" hips is very painful. The sacrum gets torqued causing in my case spine fractures at L4 & L5 which then traveled up my spine to L1 and I'd already had a fracture at T10 too. In others, damage can be done to L4 & L5 from the improper rotation of the pelvis.

    Just want to give a shout out to Jam regarding that strontium tip. My bones are now normal. No more osteoporosis or osteopenia. Thanks!
  6. lisette2

    lisette2 New Member

    Hi, Munch

    It's been a long time since I have been to this site. I don't know if you remember that SIJD was a huge factor for me when I first joined.

    I started a long thread called "anyone with low back/butt/hip/tailbone pain?" I kept bumping it because so many people kept saying that they had that same sharp icepick pain in one or more of their glutes. I don't know if a thread from that long ago would still be saved on here.

    I have read theories on how the weakened adrenals can cause weakness in the spinal muscles that are next to them which allows the pelvis to rotate forward, creating a strain on the ligaments. That is only a theory, and I certainly don't know the answer as to why this seems to happen so much with us.

    I also believe that the pelvis is the bowl that holds so many of our problematic organs that can carry infections. I think people with colitis often have trouble with their SI joints.

    I see that you have already had the fusion surgery. I have heard that is really rough to go through. I wish you all the best. I remember people on a website talking about the Georgia surgeon and how their surgeries turned out. I can't remember his name, though, but it must be the same guy that did yours.

    For those who want to read more about the sacrum and how it affects the lower back, you can go to Richard DonTigny's website called the low back There are no competing interests there with this site. He was the one who saved me from this horrible pain eleven years ago, before there was much talk at all of this problem on the web. He didn't have this really great site up at that time. He was just a retired PT trying to help people on a message board.

    I had bilateral SIJD, sacroiliitis, (the "itis" is the inflammation which sometimes does or does not come along with the dysfunction). Mine was able to be improved with prolotherapy, which is really difficult, but it is an option before surgery.

    In the meantime, whenever I feel that my pelvis is a little wonky, I do the corrective positions that are explained on the site and that usually helps within a day or two to resolve the pain. It didn't resolve the pain before I had the prolotherapy, and before I could hold these corrections. Because my ligaments were loose and the joints and soft tissues were inflamed, it took a while for all that to calm down, but they did.

    JAM-- you might remember me. I had my correlating tailbone pain fixed by an osteopath. The pain is generally caused by the two main ligaments to this area being off balance (they are affected by the wonky pelvis, too).

    One is too tight and is pulling on the other, and so it hurts to sit. The tight one can be gently stretched (like the OB doctor does on the perineum during childbirth-- if you had that done). You can ask your D.O. if he can do this.

    I hope "the low back" site helps some people. In the meantime, Vitamin C is good for collagen production, which our ligaments need for strength.

    Hope your recovery goes well, Munch, and that your SIs stop giving you grief.

  7. kellygirl

    kellygirl Member

    Thanks for the info, I joined the site on Facebook!
  8. cherylsue

    cherylsue Member

    I had no idea what you were talking about before, but you really went to h@#@ and back for this procedure. I hope you do well and are no longer in pain.

    What did Dr. M say to all this? Did she know about the surgery? How did you find your doc?

    Did hubby fly you down and back? I can't even think of you going by car all that distance?

    Hugs to you.

    You can email me.
  9. munch1958

    munch1958 Member

    I think I remember you from years back. Many of the people on the group seem to have one leg shorter than the other. This causes huge problems when you get into your 30s and 40s. I had my knee replaced 10 years ago and the doc swears he fixed my unequal leg lengths but I think he just transfered the problem upwards to between my knee and hip. I had a shoe lift as a kid and wore until it broke.

    Before resorting to surgery, I had tried something like 28 doctors and had 2 other spine surgeries to fix 6 fractures due to osteoporosis and growth hormone deficiency (currently on HGH after flunking the stim test for HGH release.) I have hypothyroidism too and adrenal insufficiency. The percolating sub-acute chronic infections don't help at all.

    It's been tricky to not relapse after this surgery and this time my LLMD is working closely with me (CherylSue and I see the same doc in IL) on getting enough HC (hydrocortisone) for post-op stress dosing. Not enough cortisol seems to make my pain levels skyrocket.

    My laundry list of things that didn't fix the problem:

    acupuncture -- told it would not fix a mechanical back problem;
    4 chiropractors;
    2 different physical therapists -- about 75 visits in total;
    7 rounds of prolotherapy;
    6 different DOs;
    4 orthopedic surgeons;
    1 neurosurgeon & 2 kyphoplasties;
    cranial sacral therapy;
    umpteen different devices;
    and a

    Partridge in a Pear Tree! I was looking into morphine type pain pumps and radio frequency ablation (RFA) but didn't want to be chained to constantly going back to get the batteries changed on the pump and the medication refilled. RFA has to be done every 6 - 9 months! No thanks.

    There was too much arthritis in both joints to make the pain go away. Prolo seemed to help with parts of me going out of alignment and the hypermobility issue but I was never able to get rid of the pain.

    I finally went to see Dr W David Weiss in Gainsville, GA for corrective surgery. They have a wonderful program there. I went down on a Mon to meet with the doc for 2 hour appointment.

    On Tue, I had an EMG done by a rehabilitative neurologist where they identified the sources of pain signals. Met with a physcial therapist who has aligned 4,000 people during SI surgery while they were on the table. She adjust me and I was a little better the next day.

    On Wed, I did pre-op testing at the hospital where they drew blood and did an EKG. Then I signed the consent forms back at the docs office. Surgery was done on Thur. I was released same day and am one of the first few SI-Bone i-Fuse patients down in Gainsville. They had used the traditional method of fusion but are now doing the i-Fuse implants there. So I got 2 screws on my right side (the stuck one) and 3 titanium rods on my left side.

    I've got photos on my Facebook wall. Send me a friend request if you are on FB:
    (edited by moderator)

    Dr Weiss and Vicki Sims are very familiar with Don Tigney's work. Dr W mentored under Dr Alan Lippett before he retired. There are a few other surgeons operating in Atlanta area. One I know nothing about other than his Youtube videos. The other doesn't have a good reputation so please be careful. I know more than one person who didn't have a good outcome with the bad rep doc.

    For more info:

    (removed by moderator)

    (removed by moderator)

  10. munch1958

    munch1958 Member

    I'll look for you on FB!
  11. lisette2

    lisette2 New Member

    I would have had surgery, too, if the prolotherapy had not worked for me. And seven rounds is more than I had. You certainly did everything possible before resorting to surgery, and I'm so glad that you found a good surgeon.

    Dr. Lippett is the one I was familiar with. At the time I found out about him, he was doing the fixation with the screws and that was not going so well with people down the road. (Used to make me want to faint just to read about). I'm glad that you were able to get the other kind.

    DonTigny often spoke well of Dr. Lippett as being one of the few doctors willing to treat to this problem.

    My own SIJD is not cured-- I still have it go out on me, and I have to do those corrective exercises (Manual Rounds), and I probably should have more prolo, but sometimes I think that would just exacerbate and set me back with the FM pain, so it's like choosing between hideous Bachelor #1 and Horrible Bachelor #2 on the Back Pain Game.

    But the chronic "itis" inflamed nature of the problem is gone, so I just try to be grateful for that.

    Regarding leg lengths: there seems to be a debate between chiropractors and Physical Therapists. The first says all the problems come from the discrepancy and mess up the hips. The PTs say it is the rotation of the hips that cause the length discrepancy.

    I think an interesting way to tell is to have someone compare the evenness at the ankles while lying down, and then again while sitting up. If the discrepancy goes away upon sitting up, then the origin of the problem is in the hip rotation. If it stays, then there is probably an actual difference in length.

    I don't remember well who made the connection between FM and sacroiliac dysfunction. I remember reading a brief paragraph about it in Devin Starlanyl's book a long time ago. But I think the adrenal theory is published somewhere by a chiro named Goodheart? I don't have a better memory of it than that, sorry.

    I remember how absolutely horrendous that SI pain was. At the time doctors believed it was caused by depression. I went through the website search for answers on that issue before I was dxed with FM. To go from one "it's all in your head" dx to another in one year was just crazymaking.

    Now there are so many websites that talk about the SI joint and its mechanics that it just boggles my mind. I am so relieved for all the people who are finally getting diagnosed correctly right away, instead of being relegated to the psychiatrist's couch for "stress management".

    Take it easy on your recovery, Munch-- that is what I recall the surgery veterans saying over and over on the old forum. It is so easy to feel liberated and then overdo it.


  12. ellikers

    ellikers New Member

    Hmmm ... I had legs of different lengths when I first when to PT in 2007. Turned out I had a rotated sacrum, L5 & L4, but the PT put them back in their place and for the most part those changes stuck.

    I've had pelvic muscle pain and pain radiating from hips on and off before but physical therapy was a big help.

    It seems like anything that deals with muscles, trigger points and pain could be tied to FM ... I would guess that part of the pain from this situation is due to some muscles being overused and some underused (from having everything so "out of whack").
  13. Bruin63

    Bruin63 Member

    since 1997, that was when my dr. at the time, told me that my Scacrum kept slipping out of place,

    just stepping off a step can cause it, very painful, for sure

    my neuro won't do any more surgries on me, due to other health conditions, so i have been looking for a knowledgable massage therpist who know's how to put it back into place, without killing me.

    when i was in idaho, my bf was a mt and did this method on me, of rotating the leg so that it would pop back into place, didn't hurt, much,

    ca seem's to be into massage theraphy as beauty treatments, and done in beauty parlors.

    hope everything goes well for you and your pain taken care of.

  14. chloe_s_mom

    chloe_s_mom New Member

    My SI joint pain came out of an accident 7 years ago, this past June - I was 26 weeks pregnant, crossing the street when I was hit and thrown by a car. Baby is fine, now an active soon-to-be 7 yr old.

    I counted my blessings having 'broken' nothing and assumed that I would be fine. Well, that began an incredible journey/education on SI joint disfunction and pain.

    My DD didn't start until 2 yrs ago, so for me, I think that they are related, but the other way around (the accident injury triggered FM/ME).

    My rheumy was trying to chase down a diagnosis of ankylosing spondylitis, but xrays show the opposite of fusing of those joints - my SI joints are so wide one could drive a truck thru them. Of course, two pregnancies can have an effect on them too.

    I did several sessions of prolo therapy on both the si joints as well as multiple points up my spine (I have horrible, horrible thoracic pain that preceeds the accident). The prolo therapy did nothing for the thoracic areas but I think that it has helped, a wee bit, the SI joints. I no longer feel like my pelvis is going to fall apart and drop to the floor.

    Will read up on this post and the info on the FB link later - thanks for the posts!
  15. Picklington

    Picklington New Member


    SIJD is very common in people with hypermobile joints and hypermobile joints is one of the conditions that can cause most/all of the same symptoms as fibromyalgia and CFS.

    I have had a major problem with SIJD for about 10 years, but it is getting better as a result of several things:
    - I stopped sleeping on my front/side and finally got used to sleeping on my back
    - I wear those trainers that make you walk and stand better (mine are Sketchers Shape Ups but I'm sure other brands are just as effective)
    - I sit on a gym ball as much as possible, which strengthens my core muscles

    I have noticed all of these making a huge improvement over the last year or so. My SI joint still plays up but seems to calm itself down if I walk around in the Sketchers - at first it just helped a little and kept me sane until I could get to a chiropractor but now I very rarely need the chiropractor for my SI joint as I can fix it myself by wearing the shoes. (Still funding the chiropractor's beach house due to my other pains though!)
  16. Picklington

    Picklington New Member

    Hi Jam, I wake up stiff as a board too! So difficult to move when I wake up! But if I'm stiff in alignment then it's less painful than being stiff when my spine is unbalanced. Yeah I'd definitely recommend the shoes. I just wish they made some that looked a bit more glam so I could wear them for all occasions!
  17. munch1958

    munch1958 Member

    The FB SIJD group has 450 people in it now! I think they estimate that 25% of people with low back pain have SIJD. Just go to FB and type in SIJD and the group will appear. I think the moderator removed my link. They don't sell supplements so I still don't get that rule here. It's just information for people with this problem.

    I had the surgery in April '11. I did great for the first 2 months. I think once fusion was achieved, my SI joints shifted. Now I've got one side higher than the other according to my chiro who is going to DO school in Ontario. I paid a physical therapist to make them EVEN pre-op. The procedure that I had was mixed with i-Fuse on one side and pedicle screws on the other side. There have been no studies on this!

    The surgery has caused my kyphoplasty to leak bone cement at: T10, L1 and L5. So now I'm facing another surgery to get the bone cement out of my disc spaces and off my nerve at L5.
  18. evelinger

    evelinger Member

    Hi I am new to this forum. I will begin with the beginning as far as I remember. I have been struggling with bilateral hip pain and tailbone pain for over 1 year. I am sure I am one of the lucky ones who have been dealing with this for even longer. I have went to my family doctor, then a physical therapist, then to an orthopedic specialist. I have had one time of manuel manipilation of the tailbone, ( which I nearly passed out from). I have also tried the medications and lastly the shots. I had 3 and then 1 week pain free and then the pain came back even worse. I am now waiting for an MRI. I am more than struggling with my daily tasks. I work at a desk job and get up and down every 2-4 minutes to change my sitting position. I normally cannot go to sleep until after 11:30 or 12 at night due to the pain of finding a sleeping position. My pain radiates down my hips, tailbone and now into my feet and also down the fronts of my legs. I have been so exhausted and feel pretty hopeless. I can no longer exercise due to the pain that shoots up into the groin area. I am 47 years old and have been healthy up to a year ago. I have an MRI scheduled for next week. I am already panicing because I have been told that the MRI will last for over an hour. I can barely sit for 2 mintues with excruciating pain. Are there other people who are struggling with the same problems? Please help me.