Sacroiliac and Lower Back Pain

Discussion in 'Fibromyalgia Main Forum' started by TaniaF, Mar 28, 2009.

  1. TaniaF

    TaniaF Member

    I know I have some FM and Myofascial Pain. But I have some sort of weakness in the SI joint and lower spine. The x-ray looked fine, but I insisted on getting an MRI next week. Been in pain for a month now with no relief. Riding in the car is miserable.

    I slap on a Lidoderm patch and take Tylenol. Sometime I take an Aleve, but I really don't think there is inflammation as the Aleve hasn't done anything.

    One PT told me on the phone that I need manipulation to re-set the SI joint. Sounds scary.

    Does anyone else have this SI and lower lumbar pain? What have you done to help this problem?

  2. Empower

    Empower New Member

    Bumping for you

    I get that too, and it is miserable

    I do light stretches that PT gave me, sometimes it helps

    I have myofascia pain across my shoulders
  3. Debra49659

    Debra49659 New Member

    Lower back pain can of course be caused by FM as well as a number of other causes. I get SI injections about 4 times a year that do provide some relief. I also tried trigger point injections in the hip area which didn't help either my hip or back pain.

    Heat helps a little as do stretches, only other thing I can think of is medication. I take 2 hydrocodone, as needed.

    Hope that helps,
  4. kellyjk4

    kellyjk4 New Member

    I first went to the dr for low back pain 1997, after several years of hurting. That dr diagnosed me with fm and told me that was the cause for the back pain, so I just lived with it for a long time. Then, in 2006 my pain dr decided to make sure there was nothing else going on. The x-rays and MRI's all came back showing some disc ruptures, but the discogram (so painful) didn't "match" what the other tests showed, so no one wanted to do anything else about it. When my neurosurgeon sent me for a stand-up MRI, we finally had the answer. I had spondylolisthesis. By the time I had surgery in Dec 2007, I could barely walk. The symptoms were: pain when sitting, when getting up, when walking . . . you get the idea. Riding in a car was horrible. The only thing that was even semi comfortable was laying down, because the vertebrae slipped back into place when I did.

    I can't say my back no longer hurts at all, and it's been a very long, hard road to recover from the surgery, but I no longer feel as though the lower half of my body doesn't fit the upper half. The best way I can describe it to say that it felt like my lower body wasn't on right.

    The best advice I can give you is to keep pushing, even though that's so hard to do. You know your body and you know if something isn't right. I had one neurosurgeon practically throw me out of his office when I asked him to keep looking for the answer. Looking back, I'm glad that happened, since it meant I ended up with a great doctor in the end.

    Also, you might want to ask various physical therapists who they recommend as a neurosurgeon. The physical therapists are the ones who spend the most time with the patients after surgery and they usually know who has gone a good job and who is just a jerk.

    Good luck -Kelly
  5. TaniaF

    TaniaF Member

    but I didn't do anything that I know to hurt myself. I was so mad at my ortho as I went and he x-rayed my back and said the problem with me is that I'm weak and frail (due to no exercise) and to go to therapy. And I must say he had an MRI dated 2006 that showed spondylitic changes from L2 down to L5. I also have weak SI joints.

    I signed up for therapy but decided to wait and have another MRI done first (asked my Internist) before doing therapy. Need to know exactly what we are dealing with.

    Is there any alternative measures for Spondylitic changes (or is this the same as Spondyliolisthesis) than surgery? I also have a bad case of osteoporosis and Myofascial trigger points too! Do epidural shots help? How about wearing a ortho belt?

    Just looking for anything but surgery. My aunt had so many back and neck surgeries throughout her years and still as bad as she originally was. So why go under the knife?

    So many times we say it's just FM and it could be other problems.

    Thanks everyone for the replies. Anyone else????

  6. pitoune

    pitoune New Member

    I suffered for over 10 years with my back asking doctors after doctors to check it and all they would do is x-ray but nothing ever did show up on the x-ray. Then after I got mad, I alsked for a Scan and it came back that there was something wrong but they could not see well. Once again, I had to fight with my doctor to not stop there and send me for an MRI. It came back that I have 3 cervical, 2 dorsal and 3 lumbar herniated discs including loads of buldging of discs here and there. Mind you, no one wants to do surgery on me because of the DDD and they all say that if they do fix one, 2 more will appear but let me tell you, it's painful. I don't want to go under the knife either but if it will take the pain away, I'll do anything. I'm 51 years old with 2 children and 5 grands, 10, 4, 3, 2 years old and 2 months, and I would love to be able to get down on all four and play with them.

    Like you, I'm not good at travelling anymore. My daughter is 7 hours away and my son is 8 1/2 hours away so I don't have to tell you that I don't see much of them anymore. Maybe once a year if they come down. We're gonna travel to my son's place for Easter Holiday as my later grand-son is being Baptise on Easter Sunday and I know it will kill me to say the least. I'll be a total wreck by the time we come back home and my daughter is coming back with us and her 2 children. I don't know how I will manage that after such a long trip but she already knows that she will have to take care of everything including me cause I'll more than likely will be bedridden for a few weeks after we get back home. I would not go if it was not for the Christening but I don't have much of a choice and I haven't seen him yet so I'm really looking forward to holding him you know.

    So you keep asking your doctor for test to get done on your back. I know how hard it is. Sometimes, they make me feel as if the money was coming out of their pockets grrrrr. Keep fighting hon and don't give up.

  7. TaniaF

    TaniaF Member

    What do you take for pain? I'm limited to Tylenol, maybe an Aleve. I'm so sensitive to meds. I can also wear a Lidoderm patch, but that's it.

    Did anyone tell you to wear a brace? I've been reading about how braces keep the spine in correct form.

    I'm 57--my kids are grown--but now I have a grandbaby (1/1/2 months old) and I can't make the 4 hour trip to see him. I thought of laying down in the back seat of the SUV--but even still the motion of the car will make things worse.

    I'm having the MRI done on Monday and see the Rheummy on Wed. Then to therapy and hopefully they will make me a brace to wear.

    I'll keep in touch.

  8. munch1958

    munch1958 Member

    A good physical therapist -- find one that specializes in SI joint dysfunction -- can help to put the joint back in place. I saw one P/T for 3 weeks and she was not getting to the core problem. I just switched to a P/T that is further away but she's way more agressive. She's right next door to a chiropractor so they see lots of bad backs. She's taken classes in SI joint dysfunction. If you can find one like this they are worth their weight in gold.

    The SI joint doesn't move much and one side or the other can be stuck or out of place. That causes the other side to hurt from over use. The unstuck side does all of the work.

    Maybe the Rheumy can find something medical that you can take for the changes seen on MRI. I just saw one on Thur. She is suggesting Remicade because my problem is due to sarcoidosis all over the pelvis and femur bones. They thought it was metastatic cancer at first but the osteolytic lesions they are seeing are from sarcoid.

    This is a VERY painful condition. Possibly you could check into something narcotic. I'm on 6 Norco 10/325, 4-6 Soma and 40 mg Opana ER 3x a day. This is enough to knock down a small hippo. I'm one of those people who are NOT sensitive to meds. I also have 6 broken vertebrea due to severe osteoporosis.

    Riding in the car is the worst because at some point you do have to brake. Pushing on those pedals will really aggrevate things. So does flipping over in bed. Sounds simple but it's so hard when your SI and lower back are screwed up.

    I had a brace in the beginning but it did nothing. Cost $1,950 too! I may try to sell it on
    e-Bay and recover some of the money I wasted on this thing. There's something called an SI belt that can be worn under clothing. You may want to Google it.

    The doc at the pain clinic would like to do a RFA (radio frequency ablation) to zap the nerve coming from the left side of my SI joint. I'm not crazy about anymore surgery but as a last resort it would be worth a shot if P/T fails.

    Good luck! I hope you find something that works. I know you are suffering in a major way.
  9. TaniaF

    TaniaF Member

    Did you have any problems with Forteo? I heard it can cause people to faint--maybe the sensitivity thing? I was thinking about going back on the Actonel. Been off meds for the last year--not a good idea!

    Also, do you think the SAMe helps with pain? I want to try this supplement.


  10. monica33flowers

    monica33flowers New Member

    I have been having a lot of back problems as well. I have to go back and see my neurosurgeon. I also had surgery on my cervical C4-5 which had ruptured. I also have several bulging discs in the cervical and thorasic (sp?) along with bone spurs.

    About the ablation. I did try this as well prior to having surgery and it was horrible. We (the dr.'s and I) hoped the ablation would help but it made everything so much worse. It has been over a year from the ablation and I still have dead spots (numbness) on the left side of my neck. I do know some people who did have luck with the ablation but it only lasts a short time.

    Keep us posted on the MRI and what they find.

    Best of luck to you!
  11. AuntTammie

    AuntTammie New Member

    In general it is not a good idea, unless used very short term for something that absolutely has to be immobilized.....otherwise, it winds up causing the muscles to atrophy and that in turn actually makes the original problem worse
  12. I have to see a chiropractor 3-4 times a month to readjust the joints. I take 2 diff strenghts of pain meds and dr is now going to try radio wave ablation and try to numb the nerves. I get the equate menthol patches at walmart..those help alittle bit when I have to go out. Good luck I hope u find what works for you and gets you some relief.

  13. kat0465

    kat0465 New Member

    TaniaF, i have this , i honestly thought the pain was from all my female problems i had,But that was only a small part of it. after a MRI a couple months ago, they found 3 bulging disks,and Arthritis in my lower back & lumbar.
    the Hystorectomy helped with that heavy dull aching pain, but i still hurt really bad especially after laying for way too long in the bed, or if i over do and bend a lot, the next 3 or 4 days are He@@.
    i am taking vicodin ( 2) per day. it helps a little bit, but i usually have to do the Hot showers& heating pads. Although i try not to take the vicodin, cause they cause (SOrry) Constipation somehting awful, and that in itself dosent help the back pain.
    Sorry not much help, but your not alone for sure!
    Ohh, and YES!! Long car rides are a pain in the... well you know,lol.
    [This Message was Edited on 03/29/2009]
  14. kellyjk4

    kellyjk4 New Member

    sorry for the delay in getting back to you. I don't blame you for being mad at your ortho - he doesn't sound very sensitive or in tune with your needs. The only alternative I know of to surgery is pt. My physical therapist actually has been living with fairly severe spondylolisthesis for many years - he controls the instability with keeping his muscles very strong. That's probably going to be hard for you to do with fm, but it's certainly worth a try.

    From what I understand, spondylitic changes are degenerative changes to your vertebrae that can cause deformity of the joints, pain and loss of function. Spondylolisthesis, on the other hand, occurs when one vertebra slips forward on the adjacent vertebra. I'm not a medical professional, though, and I don't know the similarities between the treatments.

    I completely understand your reluctance to undergo surgery. I was very lucky to find a neurosurgeon who believes in surgery as a last resort, so when he showed me the MRI and said it was time, I knew it really was.

    I tried shots, ablation, wearing a brace, and bed rest. The shots didn't work for me at all, and the ablation seemed to cause more problems (for a while). The brace didn't make a difference. Bed rest helped, but only while I was actually in bed. With two kids, that was just not a long-term option.

    One problem with surgery for people with fm is that the recovery is so much harder for us. That actually was one reason my doctor was hesitant to operate on me. Also, I had trouble with pain control in the hospital. My doctor went in through my stomach and also through my back (I have some pretty impressive scars). My back is very stable now, but it made the initial recovery so painful. The surgery itself was successful for me. I, too, have heard horror stories about people not finding relief and sometimes ending up worse off than they were before. On the other hand, though, I've heard a lot of stories about people who say surgery changed their lives.

    Whatever you decide to do, make sure you get a second opinion. By the way, I never did actually injure my back either. It just started hurting and steadily got worse. It still hurts now and then, but it's fm pain.

    Take care -Kelly
  15. paugus

    paugus New Member

    Hi Tania,

    I have had lower back pain from spinal stenosis, arthritis, and degeneration for about 5 years, and for about 1 year I've had pain in my right hip, leg, ankle, and foot, resulting in weakness in my leg. I finally went to a different orthopedic doctor, and on an xray he saw a slipped vertebra, very low in my spine (about L4 or 5) which didn't show up on my MRI. This is what is causing the pain in my leg. I've had lots of physical therapy, and I've had the injections, so I may be having surgery soon in which they would fuse the vertebra into place.

    I hope this is helpful to you, and good luck to you!


  16. loto

    loto Member

    I have the same pain, plus it makes my legs hurt most of the time also. I used to see a chiro for the manipulation, and it did help. Unfortuneately, at this time I can't afford it. He said my left hip was always "jammed up:, and he'd set it all back in place! It did wonders for me. Now I've got it all out of place again, but haven't done anything about it. Nothing helps. Not the vicodin, or anything. So, I just keep going, moaning and groaning. Some days I just don't want to get up though.
  17. CanBrit

    CanBrit Member

    I have FM and MPS as well as Degenerative Disc and Joint disease. One of my biggest problems is my lower back. I had sacroiliitis just before I came down with FM. Pretty much, I don't sit a lot. When I do I use a large heating pad. It helps a bit.

    Other than pain meds to help, I'm in the same boat as you...
  18. TaniaF

    TaniaF Member

    Thanks for all these wonderful posts.

    The first visit to the PT was amazing. This man (who specializes in SI and backs) did a simple alignment. Was afraid at first, but it didn't hurt at all. He said my SI joint on the right was locked. I iced it and rested a couple days. By the next time I went to PT it was still in place and working properly.

    He also measured my pelvic area and legs, finding a difference of about 3/8"--I put a gel insole in my right sneaker and this has helped my pain as well.

    I managed to get in a few more sessions, until my asthma flared up and had to stop for awhile. Went on some prednisone (which I hate) and still weaning off it.

    Hopefully the back will stay in place--doing stretches daily and walking when I can.


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