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Misery loves my company- nothing helps lately

Hi guys, I just found out that I have sacroiliac dysfunction and I had an epidural on the right side where my leg hurts the worst. They also did my facet joints and lumbar- a total of 4. Relief was only a few days and now the pain has crept up relentlessly. I have deep, aching pain in my lower back that radiates into my right buttock and then both of my thighs. Things are further complicated by the bilateral nerve damage in my legs, especially the right. Sitting, driving, and walking is agony. I have a Dilaudid pain pump with Bupivicaine for 5 years now, which had rescued me from a pitiful existence by controlling the pain better than my experience on orals. I have Norco for BT pain and muscle relaxers, nerve pain meds, and anti inflammatories. It almost feels like when I blew my L4-S1 discs years ago. I never thought sacroiliac dysfunction was this painful..boy was I wrong!
Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.


  • MsAnnThropistMMsAnnThropist Posts: 8
    edited 08/06/2015 - 12:17 PM
    I'm sorry you are suffering. SI joint dysfunction is a very painful condition. I have had it for many years and only recently diagnosed after a diagnostic SIJ injection. I suffered twice as much after that injection and am now recovering after a therapeutic SIJ injection. No relief yet. Have you had a diagnostic SIJ yet?
  • After having me perform some manuevers (forgot the name of the test) and the doctor remarked that I had sacrolilitis on my right side. Then I had the epidural where they targeted that area as well as the L4-S1. I felt good for 3 days and then the pain came back with a vengeance. It first hit me as my tailbone area being incredibly numb and spastic, and then it turned into a deep ache there. I could barely walk..my legs felt very heavy, especially the right one. The pain traveled down from my back, buttocks, upper thigh and down to my foot. It worsened when standing up and walking around. I already have issues and it's hard to tell which is which sometimes with all the overlapping symptoms I have. I already have permanent nerve damage in my right leg and also get nerve pain on the left, but not as bad. This reminds me of when I experienced back labor or when I suffered disc herniation. IF I fall asleep on my back, I wake up in terrible pain in the middle of the night or early in the morning. I can't lay in one position for too long either, even on my side.
    I'm sorry you've had to deal with this for so long and I hope the SIJ injection kicks in right away for you. Have you tried using ice packs as well as medication? My ice pack is my best friend lol. I also heard aquatherapy is great for this. Hang in there and I hope you get relief soon.
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
  • My pain doctor sent me to see an orthopedic surgeon who diagnosed SIJ Disease and he referred me back to my pain doctor for the diagnostic SIJ injection. That first injection was just an anesthetic in the SI joint and I had immediate relief. I mean I got off of the table and I was pain free. It lasted for about four hours and then the pain gradually returned that afternoon. The following night I was awakened with severe low back and right buttock pain and it never stopped for two weeks. It was two weeks of the most miserable pain and that was proof that this pain in my back, buttock, hip and legs is coming from my right SI joint. No doubts at all. So, I had the cortisone injection a week ago and I had an increase in pain for about three days, then it subsided a bit for about three days and now i'm back to square one... No better and no worse. Unless I feel better this coming week, I'd say the therapeutic injection was a fail. My next step is a rhizotomy. I had a rhizotomy for facet joint pain four years ago and it helped tremendously.

    We have very similar pain in that it hurts in the low back, deep buttock and both thighs. I have miserable pain in what mostly feels like from the waist down. It increases out of the blue and it makes me so grumpy. I can take a lot if pain and for the last year I have been off from work because sitting for long periods of time just too painful to focus. What is so hard for me us that I absolutely hate to take drugs and these past two months the pain has increased to the point of my having to take two to three Vicodins a day. I used to be able to rest and get by with the occasional pain medication because I can usually tolerate high pain levels but this condition is consuming me. This SIJ pain is relentless and it never goes away. I don't sleep well anymore because it's just painful to sleep on either side now. I'm awakened by deep piercing buttock pain and sometimes not even Vicodin helps. Sometimes the pain escalates so quickly and its very hard to get it under control. My legs hurt so bad but it really just feels like pain from the waist down. I am so frightened at the very real possibility of facing a fusion. I have heard that the recovery is hard and long and sometimes people only get worse.

    I cannot do anything fun anymore without pain medication. I cannot do housework without pain medication. I cannot play with my child without pain medication or be intimate with my husband without taking pain medication. It is so depressing and I just cringe when I think about how many pills I have swallowed to manage this miserable condition. I finally just stopped the anti inflammatory is because they don't help at all. Thank you for suggesting ice because you are right, ice packs do help.

    Another thing that happened right before this condition got much worse was that I began to have deep, piercing pain in the crease of my right thigh. If I sat down with my right leg tucked under I would have a severe sharp pain that felt like I had jammed something deep between my groin and buttock. Soon I realized that something new was amiss when I became unable to sit on the floor cross legged because my thigh/SIJ is locked or frozen or something... Have you experienced anything similar? Has anyone reading this had any issues with what feels like a very painful locked or frozen SIJ? If I sit on the floor and attempt to cross my legs (aka the lotus position), my right thigh at the pelvic crease cannot be pushed down, is very painful and is what feels like stuck or locked.
  • I have posted on here about the SI-joint and then due to pain I have not posted for awhile.
    You are right about the pain it is beyond words and I have had back, sciatica, nerve and some others
    but this tops the pain chart.
    It started for me getting really bad about a year or so ago and continues to get worse on my left side for the most part.
    During this time I have seen five different Doctors. I have done injections (begged for one of them) with no relief and last week a Orthopedic
    did no exam and injected my hip and my husband had to hold my hands, I kept wanting to grab the Doctors hand so he would stop.
    He said "I don't know what to tell you" and that was it. I got home and for three days the pain was hell.
    Also did the therapy, swimming, therapy at home to strengthen my core muscles. Here I am in more pain than before with no ideas what to do next.
    I take pain medication like you I hate it but right now I could not survive without it. I am actually trying to cut back on it. I have taken it for along time and have developed a tolerance. I don't want to go in the direction of a pain pump yet. and use
    Ice too it is my best friend but there are many many times I cry in pain and don't want to fight this anymore. It has taken my life away.
    In the past several months I have not been able to do anything like spend time with family and friends which has been devastating.
    I know there are those who would find that unbelievable but this pain has made me a hermit. How are we supposed to be happy when
    our lives are like this, I wish someone would tell me. I do as much as I can though when it does take a back seat but I am always guarded
    knowing if I move or do one thing it will go nuts.
    MsAnnThropist I have that exact deal with not being able to straighten my left leg out up around the top
    and if I do it I get pain into my groin and severe into my butt. Pain medication does help but it is always there
    screaming in the background. You are so right too about the lower back I have had pain there for the last 10 years
    but not too this level it is hell.
    I am at a cross roads right now not sure what direction to go to get the right diagnoses for some reason the
    Doctors I have seen just avoid that as the problem. I was told by a Doctor here in Utah that they are behind the times
    and don't go there.
    So sorry for going on about me I did not mean to do that. I wish you both the best and hope you find relief.
    If this is all scrambled up I have to get up and walk around and as you know the brain does not work to great when you are in pain.
    Take care of yourselves and I wish you the best.
  • Michelle87MMichelle87 Posts: 1
    edited 08/28/2015 - 11:58 AM
    I'm a paramedic and hurt my what I thought was back a year ago June, seen a neurosurgeon yesterday and he thinks it's my si joint which is what my physical therapist thought for the 20 sessions I went to her, with her trying to get my si joint back in place with no luck so she put me in the si belt she said I was one of two patients she'd ever seen it not work on so now I'm going in for this injection and I'm scared to death. The neurosurgeon said that if the shot doesn't work I'm looking at fusion any helpful tips or words of encouragement would be very grateful right now!

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  • Thanks for your replies..sorry I was gone for awhile. I certainly understand how difficult it is to deal with this pain on a daily basis. All I can say is keep hanging in there and persevere. Things can get so complicated because we all have other problems coexisting with sacroiliac dysfunctions. I recently had a radio frequency ablation bilaterally in my lumbar spine- 5 injections in all. I also have severe facet arthropathy which adds to the stiffness, spasms, and pain. I can't get comfortable lately, even laying down is a problem. If I wind up on my back while sleeping it's torture, and it wakes me up many times at night. The mornings are hell. I feel like I'm missing out on life all over again because of the pain. So far I feel no real improvement since the procedure but I know it takes time. I'm worried because of all the extensive spinal problems I have that it won't take, and it frustrates me because I have read so many positive outcomes of 6-18 months of relief.
    Michelle, I'm sorry that you're also dealing with this. What type of fusion is your doctor recommending? I-fuse? I had a TLIF done years ago on L4-S1. I wonder if the hardware interferes with subsequent procedures/injections down the road. Keep in mind recovery time can take up to a year, not 3 months like some surgeons say. My pain worsened after the fusion even though it was successful in addressing the structural problems , and then the NS implanted my pain pump because further surgical intervention was out of the question. I also have epidural fibrosis and permanent nerve damage. It's a mess lol.
    Ice packs helps to dull the pain temporarily for me, and aquatherapy also is very beneficial. Regular PT never helped me. I also rely on oral meds and absolutely have to force myself to move a bit or else my back gets so stiff.
    Hang in there guys..
    Ol' Spiney...Microdiscectomy L4-L5, TLIF L4-S1 -post op central disc herniation L4-S1, sciatic nerve damage, retrolisthesis, epidural fibrosis, facet arthropathy, severe DDD & OA.FBSS- Medtronic SynchroMed II pump.
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