For those w/ SHARP low BACK/HIP/BUTT or TAILBONE pain

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by desertlass, Apr 12, 2007.

  1. desertlass

    desertlass New Member

    I know that this is not directly CFS related, but I think that many FM people suffer from really bad low back problems.

    To anyone who has unresolved pain in the area of the low back, this might be something to consider. "Sacroiliac Joint Dysfunction". The sacrum is the triangular shaped part of the spine at the very bottom that tilts in to form the small of the back. The top of it is the line that goes from those two "dimples" and then cuts down toward the tailbone.

    A lot of the pain is therefore in the butt, literally. It can also be across that L5 area, wrap around the hip, and in that area in front between the bony protrusion and the pubic bone. The sciatic nerve can become involved, as well and cause leg or foot pain. Sometimes the spasm and inflammation can cause referred pain in the upper back.

    These joints are called Sacroiliac or SI joints, or S1 and S2.

    The reason for this pain pattern is that the sacrum moves up slightly when we bend forward or sit, as our hips spread. When we stand back up again, and the hips come back together, sometimes the sacrum is not able to slide back into place completely, and we feel that sharp "catch".

    The pain from the sacrum being slightly out of alignment causes spasm in the musles that surround the joints and wrap around bones. The connective tissue can become inflamed, as can the joints themselves. All of this can create irritation of the sciatic nerve that runs down through all of this.

    There is not a lot known about this, just like CFS and FM. It was known about by every doctor before the MRI machine was developed-- was this in the 1940s? Anyway, doctors used to diagnose 30% of all back pain as being due to a misalignment or chronic dysfunction or inflammation of the SI joints. But this does not show up on MRIs or on X-Rays that have you lying down, which is standard, so it fell out of common parlance with doctors. Most of them believe that the sacrum cannot move, and don't believe in the problem.

    My grandma always used to complain that her "hip" hurt, but when she would get more specific, she would point to the source of her pain originating in that SI joint area. It was a very sharp pain for her, and it would come and go. This is why I included "hip" in the title.

    I learned about all this the hard way, when I leaned over to pull my pre-schooler (then) onto my lap. I first had a small tear to the annulus-- the ligament that surrounds the disc and comes out from the spine at L5. But my PCP just kept insisting the pain was all stress and depression related. Sound familiar? Soon, my SI was misaligned, everything inflamed and weakening until I couldn't walk or get out of bed by myself. The worst of this happened right around 9/11.

    In Devin Starlanyl's book the FM "Handbook", whe mentions SI joint dysfunction as one of the symptoms of FM. I think the reason we have this so much is that our collagen production can be faulty, making the connective tissue that should bind that area too mobile. Or we can have all sorts of trigger points that pull on that area and cause referred pain.

    If any of this pain seems like it applies to you, after disc issues are ruled out, you might want to look into this idea of the SI joint more fully. You can find a wealth of information on the lower back and the SI joint at:

    www.kalindra.com

    This site was started by a woman who does web design for a living. Scroll down to the part that has a box you can click on that is called "Sacroiliac Resources".

    The site doesn't look medical when you enter it, but she created it because she suffered from SI joint dysfunction or "sacroiliitis" (inflammation) and started a site that gathers articles and information from doctors and practitioners around the world. There are all sorts of treatments discussed. There is a place where a resident Physical Therapist who devoted his life to treating the SI joint and the other pain issues that result from it has an FAQ, but will also answer questions by email. I suggest reading the FAQ, first. There are also diagrams of the pelvis and joints, and how it all fits together.

    There are no advertisments, and the only product sold is that the PT has a CD-ROM at cost showing how to do his corrective exercises, but all of these are downloadable for free.

    My back injury played a big part in why my CFS/FM is so severe. I went for months without being properly diagnosed with x-rays and MRIs that showed "everthing normal", and so I wasted so much time on a psychiatrists's couch being given anti-depressants. How many times do I have to go through THAT? The answer is... at least never again!

    When my overall state gets weakened, the SI pain seems to flare up. The main problem is that it hurts to sit for too long. I had a bad case of it, but this site helped me get back on my feet, and without surgery.

    If you want to have a practitioner work on you, I would definitely recommend an osteopath over a chiropracter. However the corrective exercises offered can all be performed at home, some alone, and some with a helper.

    Hope this helps some of you who have pain in any of those areas and have been "dropped" by the medical profession with no where else to turn.

    Lisette

    [This Message was Edited on 05/16/2007]
    [This Message was Edited on 05/19/2007]
    [This Message was Edited on 05/24/2007]
  2. jmq

    jmq New Member

    I am sure that is what I have. My right hip and lower back have been hurting for three straight years...some days I cant walk, other days I walk bent over to the right. I have been to PT many times, chiros, message,aquatic exercises, lasar treatment, accupuncture, medications...nothin has stopped it! I will be optimistic and check out this site. Maybe the exercises are different from what I have tried.

    I will let you know...

    jmq
  3. elliespad

    elliespad Member

    Thanks Lisette, will check out the website. I have HORRIBLE pain there, and can't stand/walk but few minutes. When my Chiropractor (whom I rarely go to) works on my SI Joint, I about DIE. Feels like grinding crushed glass into me.
  4. Cinlou

    Cinlou New Member

    Desertlass,

    Thank you so much for the wealth of information you have supplied.....I believe this is why I have the pain I do. I have been getting epidurals in the lumbar area, the seemed to help, for a short time.

    I had the destroying of the nerves there also, about a month ago that has not helped at all. This description is so "right on" the way the pain feels.
    Thank you again.....so much for the info!

    (((hugs))
    Cindy
  5. desertlass

    desertlass New Member

    I checked it out recently, and it should be the same, but you never know.

    They have a forum, but I think reading the FAQ would be the first best place to go. The PT is Richard DonTigny, and he is retired. He comes on the forum for no money, but just to help poor souls like us. He is really cool-- in his seventies and lives in Montana and goes flyfishing. Some of us called him Obi Wan, or the White Rabbit or "guru" names like that.

    This problem is so prevalent, and so misunderstood and ignored, or even outright denied, just like our CFS/FM, and so I feel so strongly about pointing people in the right direction with their back pain.

    It is a pain that few will understand if they haven't experienced it. Our FM pain is bad, but this pain is agonizing, and completely stops your life. Especially if you cannot sit up, then you cannot be a part of this society. The pain is so excruciating at times, you cannot even think of anything else.

    I had to do a very difficult treatment called prolotherapy in order to heal, and some people have had to resort to surgery, (but most seem to report later they wish they hadn't gone that route). Many will be helped by doing the corrective exercises and using a good supportive brace belt to keep the correction until the joint can truly heal. Treating the inflammation can be difficult, but it is really important to address it.

    Lisette
  6. Reidsbeads

    Reidsbeads New Member

    My lower back has been in pain for years, was diagnosed with siatica, had steroid shots but they stopped working and the pain from my back does go into my hip sometimes but lately my back is in so much pain ive been using my cane to walk cause my legs are getting so weak and so quick it scares me. Ill check this site out and hopefully it will give me answers. Thanks...Tam
  7. annaleeb

    annaleeb New Member

    this info was great, it is described, as some thing I have dealt with for years, not knowing or having answers for, thanks again for the other site link.
  8. mezombie

    mezombie New Member

    Thanks, Lisette. I'm bookmarking this for later reading.
  9. JLH

    JLH New Member

    Thanks for your info. I'm going to check out that site now! I also have extreme low back pain, from a pinched nerve in that exact area - between L4/L5 and S1!!!! I can only stand up for 4 or 5 minutes at a time and can not walk but a few steps!

    Thanks again,
    jlh
  10. poeticbobbi

    poeticbobbi New Member

    I was sent for physical therapy and found out all this stuff and my sacrum.My was in a position that it should not have been able to be in.The therapist would have to re adjust it every time I came in.Sadly my insurance wouldn't pay for me to keep going beyond three months.Im gonna try and get them to allow any three months for adjustments and myofascial massage which I found very helpful as well.
  11. LaQuiet

    LaQuiet New Member

    ..low back and hip pain for years.. Weird though that they finaly did a bone density test on me and found advanced osteoporosis.. Sometimes you should ask for one just in case so you don't have to go through what I do.. By the way, I'm only 45....
  12. Chelz

    Chelz New Member

    Lisette, your post really hit home. I don't even think a doctor could have explained it better than you have.

    The whole time I was reading your post, you were pretty much describing me. I have had very low back, hip, leg and sometimes abdominal pain. This pain comes and goes, but it is mostly with me all the time.

    Doctors have been of no help. My MRI I was told was pretty normal, except it did show some S1, S2 and L5 bulging and some stenosis.

    Thank you so much for your post, so much more makes sense now. Hugs, Chelz.
  13. desertlass

    desertlass New Member

    I think that is an excellent idea for anyone with chronic low back/hip pain.

    They don't seem to stress nutrition on that site as much as I'd like, so if you are already supplementing with Vit.C, or getting a lot of it in your diet, then you are really doing yourself a favor on building good strong, flexible connective tissue with better collagen.

    Do your "Manual Rounds" everyone! :) Take lots of Vitamin C!


    Lisette
    [This Message was Edited on 05/19/2007]
  14. Fmandy

    Fmandy New Member

    As I said yesterday in a post, I think my lower back pain is caused by a pilonidal cyst that has went without surgery for 28 years. They develop tunnels of pus and hair that travel at will. Most are located at the tip of the tail bone as is mine.

    They are also known as pilonidal disease. These cysts have been associated with backaches due to coming into contact with some nerves of the spine.

    I am going to find a surgeon this week.

    Do any of you know anyone who has these cysts? Thanks in advance :)

    Regards,

    Andy
  15. lil_angel1198

    lil_angel1198 New Member

    Chiro said I have.
    My pain pills and muscle relaxers usually help tremendously when I am having a flair up from it. I also find it bothers me more in my pelvic/hip area if I have to sit for a long period, and in my lower back when I have to stand/walk for a long time.
  16. desertlass

    desertlass New Member

    For Rosemarie, Jane Smith and Gigglepoet

    Let me guys know if you found your way there. Otherwise, I'll just keep bumping, in hopes that as many people who need this help will see it.

    You can research Sacroiliac Joint issues, Piriformus Syndrome (a muscle deep under the gluteus, that is short and causes a lot of pain), and read papers from World Congresses on low back pain. It is a treasure trove.

    I know, I know-- not more scientific medical papers!! Don't worry, just start out doing the Manual Rounds. It is something safe and helpful you can do for yourself while you are waiting for the doctor to rule things out.
  17. lil_angel1198

    lil_angel1198 New Member

    with this a few months ago, I am currently having issues with it.
    My PA is sending me for CTscans, x-rays and physical therapy for it. He also gave me a trigger point injection for it.
  18. I think this is what I am bothered with on my right side especially. Right now it is killing me, thank goodness for vicodin. Do you all find that climbing stairs is a problem with it. It seems to throw my body out of whack, especially a steep step. I feel like a chiropracter pushed my knee up and the one side stayed up too high. Does that make sense? OMG! it is so painful.
    Just curious Lisette, what exactly did you do for your Sacro. pain? Did you go to a dr. for this or what? I have had injections that help sometimes, sometimes not. [This Message was Edited on 05/17/2007]
  19. lilaclover30

    lilaclover30 New Member

    Had an MRI and pain is in L3,4,5,6. I have scoliosis and Spional Stenosis. My lower spine uis twisted, pinching the spinal cord and all of the nerves tradiating from those lower vertebra. The specialist said 'no, too long surgery, 8 hrs. and metal rod in back". he should have said WHAT HE WAS THYINKG TOO "TOO OLD".

    I went to pain magement. First was epiduiral, next was (I forget what is was called) 4 needled on each side of spine, 2 separagte times. Then it was radio frequency that was to burn end of nervese - did that 2 times.

    Nothing worked. I am in pain most tkime except for in bed. Chairs feel good for a bit, then tey don't fit. I know thagt this is forever bnut - tomorrow is another day" Shopping is horrid!!!!

    Good luck to all.

    Gentle Hugs

    Joan
  20. brooke45

    brooke45 New Member

    I have it too.My FM/CF got worse after I had a back injury at work> I had L4-5 S1-S2 disc herniation with an anular tear and ended up with sciatica and SI joint dysfunction. I know what you mean. My doctor did tell me there is a surgery they do if it is bad where they put a screw to stablize the joint. It had been pretty successful. He thinks I should have it but at this time I am not ready.
    Karen