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Old 06-14-2011, 01:31 AM   #1
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extreme unbearable pain in sacrum &L5-S1

I have area on my sacrum and extreme lower back that makes me scream if I make the wrong move ,I do have L5-S1 DDD ,the pain catches me off guard,I am afraid I will scream in public one day and they will come to take me away,it feels like I have been kicked in the back by a mule ,almost to the point of passing out and then it just goes away and I am sore afterwards as if I broke something, my doctors prescribed ibuprofen for inflammation but nothing will stop it from coming ,I have to be careful how I walk as not to trigger it ,I also have intense pain in the hips and legs and what feels like to be some movement in the pelvic area when walking ,it hurts to even sit on soft surfaces, anybody experience this ,if so what could it be? it is 3:30 in the morning and I can't sleep because every position that I try hurts

 
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Old 12-05-2011, 12:15 PM   #2
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Re: extreme unbearable pain in sacrum &L5-S1

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Originally Posted by capatga View Post
I have area on my sacrum and extreme lower back that makes me scream if I make the wrong move ,I do have L5-S1 DDD ,the pain catches me off guard,I am afraid I will scream in public one day and they will come to take me away,it feels like I have been kicked in the back by a mule ,almost to the point of passing out and then it just goes away and I am sore afterwards as if I broke something, my doctors prescribed ibuprofen for inflammation but nothing will stop it from coming ,I have to be careful how I walk as not to trigger it ,I also have intense pain in the hips and legs and what feels like to be some movement in the pelvic area when walking ,it hurts to even sit on soft surfaces, anybody experience this ,if so what could it be? it is 3:30 in the morning and I can't sleep because every position that I try hurts
I have the exact same thing as you do at the base of my spine. It is a horrific pain and I also have the middle of the night pain. I cannot get comfortable on either side because of him pain and can't lie on my back because of my 6 bulging lumbar disks, it is a nightmare. I cannot walk, sit, stand for more than a few minutes without feeling like I am going go it the floor. I was told that I have DDD, lumbar stenosis and sacroilliac joint dysfunction. PT does not help at all. I have had 3 steroid epidural injections which also did not help me. I am on my third pain medication because it is getting so bad which is Percocet and also Flexeril. I really do feel your pain and wanted to let you know you are not alone.

 
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Old 12-05-2011, 01:32 PM   #3
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Re: extreme unbearable pain in sacrum &L5-S1

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Originally Posted by Dobie View Post
I have the exact same thing as you do at the base of my spine. It is a horrific pain and I also have the middle of the night pain. I cannot get comfortable on either side because of him pain and can't lie on my back because of my 6 bulging lumbar disks, it is a nightmare. I cannot walk, sit, stand for more than a few minutes without feeling like I am going go it the floor. I was told that I have DDD, lumbar stenosis and sacroilliac joint dysfunction. PT does not help at all. I have had 3 steroid epidural injections which also did not help me. I am on my third pain medication because it is getting so bad which is Percocet and also Flexeril. I really do feel your pain and wanted to let you know you are not alone.
I can't believe I'am reading this , these are my symptoms exactly ,completely unexpected ,one I had some company over and went to get up from the couch and screamed so loud everyone in the room just looked at me like ,what the hell is wrong with you, I tell them all the time about my pain and I don't think they believed me until now, I did have some inflammation a few months ago and got an injection which did absolutely no good, I have been sore for about a year, I can't lean against anything hard or soft ,it is with me day and night,night and day, I have a neurologist for my nerve damage ,but all she does is medicate me, I have had every test known to man
and all they came up with is inflammation, I did have a cervical fusion with hardware in 2002 and it has since came back , I've taken flexeril, hydrocodone,meloxicam,ibuprofen, pain patches ,ultraset,requip ( I have restless leg syndrome), meclizine for dizziness ,physical theraphy, I am now surfing the net for answers , My insurance dosen't kick in until Feb 2012
so all I can afford now is ibuprofen 800 mil prescribed by my primary care dr
my problem is L4-S1

 
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Old 12-05-2011, 03:10 PM   #4
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Re: extreme unbearable pain in sacrum &L5-S1

I have the same situation and just saw my neurosurgeon about surgery....he told me wait longer as it's going to mean an L2-S1 fusion. I'm already fused from C3 to T1 in my neck.

But I wanted to ask if either of you ladies have seen a rheumatologist? They are arthritis specialists and there are certain kinds of inflammatory arthritis that affect the lower spine and sacro-iliac joints that can be medically treated much better than plain old osteoarthritis. Specifically, Ankylosing Spondylitis and Reactive Arthritis as well as Psoriatic Arthritis can affect that area but can be treated....they may have even found a cure for Reactive Arthritis. AS and PA now have really good treatment with biologic drugs that can that literally stop the arthritis in it's tracks. I've encountered a couple of people here with low spine and SI joint problems and they turned out to have AS and weren't being treated for it...just given pain management. And since AS and Reactive can hit your eyes too, it's important to find out.

Anyhow, another problem we get down in that area is bursitis. You get pain on the sides of your thighs just below the hip joint, think bursitis. If you can't sit down as it hurts so much right where the pelvis bones can be felt...think bursitis. That can be helped with a simple cortisone shot. To rule out hip arthritis, it can be felt right along the panty line so if you hurt there, it might be the hips. Again, an arthritis specialist can inject the joint and it can eventually be replaced....which they can't do with the back.

I am headed for hip replacements(knees already done)and have had every bursa in my thighs and bottom injected a few times and it helps to lower the overall amount of pain that I'm in. It all feels like my back but it's not and taking the edge off by getting the other stuff treated really, really helps.

As for PT, I've recently started doing PT in a warm pool.....92*F...and it is wonderful. Takes the weight off the joints and improves the blood flow so your muscles don't ache. Feel better than I've felt in a long time. You might want to find out if you have pool therapy available in your area. The place I go allows you to "join" for $35/month after PT is over and I can go everyday and just walk and move around for an hour +.....feels great and I'm moving much better.

I wish I could offer more ideas and help but I've now gone past the pain phase and am in the numb phase....feet and creeping up my legs to about my knees. I figure once I hit the groin, I'll be headed to surgery once again. But first it looks like I need my 3rd neck surgery to clean up even more problems. Once they operate, it just never ends!

Jenny

 
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Old 12-05-2011, 04:18 PM   #5
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Re: extreme unbearable pain in sacrum &L5-S1

I did call a rheumatologist and the nurse asked me what I had been diagnosed with and I told her DDD and spinal stenosis ,she said ,well he dosen't do that ,so how do I get in with one since I have a diagnosis of degenerative arthitis , your is a good one ,I never heard of this reactive ,but I'am going to look it up, thanks

 
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Old 12-05-2011, 05:59 PM   #6
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Re: extreme unbearable pain in sacrum &L5-S1

Ah...gave her too much info! The question is what kind of arthritis is in your spine so simply tell them you have arthritis but don't know what kind but it seems to be spine and pelvis and who knows where else...maybe hips...who knows.

Orthos will label you with DDD not knowing if a particular type of bone formation is in there, it may be something else. With these spinal inflammatory arthritic disorders, you form something called "syndesmopytes" instead of osteophytes(osteophytes are bone spurs but syndesmophytes are different). It can take years for them to form but blood tests and MRI's and x-rays may show the formation earlier and that means it's not OA and is something else.

So I would simply say that you have arthritis developing and no one knows if it's just plain old OA or something else and it needs to be figured out. Most rheumies deal with OA all the time but what they don't deal with is the pain management of long term back problems.

My rheumy deals with my severe OA and about 6 years ago, I got RA on top of it so my back is now OA and RA but at one point, they thought I might have AS from the problems with my pelvis and I had the testing done. Nope....turned out my pelvic arthritis was from having a couple of really big babies. But my doc did pelvic x-rays over a period of 5 years and watched for progression and when it didn't progress, then he knew it wasn't AS or any of the group of disorders that affect the spine and pelvis(called the sero-negative spondyloarthropathies). Ironically, AS and PA are now both treated with the same drug I take for RA....biologic drugs like Enbrel. Enbrel is now in clinical trials for the treatment of chronic back pain from OA too....amazing drug that I hope they will soon allow for anyone with chronic spine pain and DDD. About the only thing that seems to help. So help is coming but not just yet.

That is why you need to know if it's a possibility as there is help if it is. For OA, they haven't yet approved the drug yet.

So don't tell them you have DDD....just tell them you have arthritis hitting your spine/pelvis and the spine docs need to know if it's OA or something else.

Jen

 
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Old 12-05-2011, 07:40 PM   #7
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Re: extreme unbearable pain in sacrum &L5-S1

I will do it differently the next time, I gotta find out what's wrong with me,I've been to 11 doctors in 20 years ,all specialists ,I had no idea you could get arthritis in the pelvis ,that's gotta suck big time, my last xrays showed some sclerosis in my lumbar spine ,I have no idea what that means and the doctor would not put it in laymans terms ,but she wants to do a spinal when my insurance kicks in , now I gotta go look up some more stuff, thanks a bunch

 
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Old 08-19-2012, 02:29 PM   #8
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Re: extreme unbearable pain in sacrum &L5-S1

Have you had an MRI or a bone scan?

 
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Old 08-19-2012, 02:31 PM   #9
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Re: extreme unbearable pain in sacrum &L5-S1

I found your post from awhile ago but I have SEVERE Sacrum/Lumbar pain that is unbearable. Is this how your pain was? Did anything ever relieve it?

 
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