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Light at the end of the tunnel taken away...any suggestions??

Hi all. I am a 37 yr F. I've had back problems on my left side since a young child. Too many to count visits to doctors who repeated misdiagnosed it as muscle strain. Finally about 3 years ago I went to my general doc for yet another really bad back flare up. During the appt it was discovered I lost all my reflexes in the lower left of my body. So, being worried, he sent me to a spinal specialist immediately. Just looking at the recent Xray, the specialist immediately noted the left SI joint was WAY out of place. This started the appropriate treatments finally. Did PT for 8 weeks and fitted with an SI stablizing belt. Also started seeing a chiro once a month to hopefully catch it when it was going off and hopefully stopping an locking episode. Was doing ok with of course the daily SI pain and occassional flares, but for the most part was getting by thinking I would never truly be pain free. Then, about 1 1/2 years from now I had a massive lock that stayed like that for over a month. It actually did damage to my hip by shortening my IT band from the muscles contracted so long. From that point it went down hill. Was getting flares more often and eventually could no longer sit for more than 20 minutes and standing longer than a few minutes without taking a break to sit down was not an option. I was needing to take extreme amounts of Ibuprofen just to be able to move. It's pure luck really that I haven't killed my kidneys. About 4 months ago, sleeping no longer was quality sleep as I would get spasms and that nagging rod like feeling through the joint even when laying down. Muscle relaxants ceased to work anymore, in fact seems to make spasms worse. So went and saw the specialist again. At that point we decided the SI joint cortisone injection was necessary. I got this on May 3rd...and oh my god, it was heaven!!! First time since I can ever remember I was immediately nearly pain free....like 90% pain free!!! I finally was able to get off ALL pain meds and still was nearly painfree. I was told the shot should last 3 months to a year, but to not be surprised if it was only the 3 months this first time since my joint had been messed up for 30 years.
Well, I had a glorious 3 weeks. Yup, only 3 weeks. Then I suddenly got a really back lock up flare. Well, I let it go for a few days, thinking it would eventually unlock and I'd be fine again. So much for wishful thinking. After a week of pain, I called my doc's office. Now, my regular doc went on a fellowship for a year and all my info was to be sent to one of her partners. Turned out the doc she temporarily has me with is actually the doc that did the shot, so I thought..great, he should be able to help. I told him I had a bad lock up and the pain is back with a vengence. I was wondering if the shot had possibly worn off already. I can tell he didn't look at my chart when he responded. His response was "the shot should be working still, just give it a few days to improve." Then he went on to say "if it doesn't improve that I may need more pelvic stablization treatment." Arrrgggg....I've already done the PT and have the belt....surgery is the only other option left....but why go that route, the shot worked!!! It just didn't last as long as it should have!!
Well, now I'm on 2 weeks and the pain is not letting up. In fact it's getting worse. I saw my chiro this week and she tried everything under the sun to unlock the joint. It wouldn't budge. There is so much inflammation that you can melt an ice cube in seconds over my left SI joint. The only pain meds I have is Tramadol 50mg (taking 2 at a time...so 100mg) and this is barely touching the pain. Ice packs don't last long due to the extreme heat coming off. I've started taking butt loads of Ibuprofen and still barely touching the pain.
I'm so frustrated as this doctor who is filling in for my regular doc is doing absolutely nothing!!! I don't know what to do. I saw a light at the end of the tunnel for 3 weeks, but now it has been taken away. The shot works, it just didn't last as long as expected. Has anyone had a shot that wore off before the 3 month mark?? Has anyone had problems with docs like this?? Any suggestions on what I can do?? I'm in so much pain and am so frustrated to know there is a relatively simple way to make it stop, but apparently the doc won't listen or doesn't care if I'm unnecessarily in excrutiating pain. Thank you everyone for any advise, suggestions, help, or even support.


  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Wow - you sound like you are in immense pain. I am also battling with an SI joint problem on my left side. It clicks, it locks and is also rather hot. I haven't had the shots in the SI joint but I had them in the facet joints and they only lasted 12 weeks and I wouldn't do them again with how much they hurt. Mind you the more I think about it, the more I want time that is pain free. I've had this problem for 3 years and only 25. I also don't know what to do as there doesn't actually seem to be a treatment for SI joint problems. I don't want a life of pain and it's really hard to get on with day to day things. I also shouldn't be sitting but my body gets tired from standing and noe my left hamstring hurts if I walk too much. I feel I take one step forward and three steps back. It just slowly gets worse and worse. Are you able to exercise with your SI joint being so bad?
  • whtrozewwhtroze Posts: 8
    edited 07/01/2013 - 9:15 PM
    yeah, definately is a pain..."literally". Mine has progressively gotten worse at a faster rate these last 5 years. (not sure if age is a factor there, or just that it's been messed up for so long). You asked about the exercises.....on a fairly good day, what I call my normal everyday hurt, rather than the intense disabling episode flare times, I can do the exercises with mild pain, but can suck it up through it. Problem is, then I usually end up with an flared episode. So more or less, I don't do them anymore...cause why invite a flare in addition to the unpredictable flares.
    When the shot was working those 3 weeks...I could do exercises without provoking a flare....unfortunately then when the shot wore off I had a massive flare that even my chiro was afraid to touch me due to the inflammation. 3 weeks just really isn't much time to get any real strength back. Plus now it feels like I'm 3 steps backwards like you said.
  • Have you tried Turmeric? I have been on morphine & percs for almost 4 years. I just added it & it has helped with my inflammation pain enough for me being able to cut down 25% in 1-2 days. I am sensitive to meds & could feel the first pill I took within 20 minutes. It says it normally takes 24-48 hours to help.

    I would try to flood your body with anti inflammatory foods, supplements & teas(sweet holy basil, garlic, onions & anti spasm foods(sweet potatoes). You can do a google search to look for options.

    Wish I could be more help. I have tried injections in my back & Sac joint with 0% relief. :(
  • only1barbioonly1barbi Posts: 2
    edited 07/20/2013 - 6:27 PM
    Is Turmeric a supplement/vitamin? Isn't that an herb? Maybe I will Google it and would love to try it. I am open to anything to try because like you, I have reduced my pain medicine in the past and would love to be able to do it again if I could find something over the counter that works.
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