Sacroiliitis??

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Charlyssa

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I was wondering if anyone here has, or ever had, sacroiliitis? I was diagnosed several years ago with bilateral sacroiliitis and was given steroid injections, which were excruciating. Because the improvement was minimal and only temporary, I opted to not have more done....but I am getting worse. The pain is so bad I can hardly stand or walk. I'm afraid to go back to the dr. because I fear I'd be told that the injections are my only recourse. If any of you have had sacroiliitis, did it go away on its own? What treatments did you have for it, if any? Any help would be greatly appreciated!

Char :wave:
 
Charlyssa, i am 15 month after surgery - i am not recovered, my surgery failed and therefore i am having a second surgery soon.
The thing is: my first surgery was not for SIJoint, it was 2 levels fusion, open decompression/laminoctomy, etc. The problem with my SIJ i got 6 month after the surgery!!! I did not have it before. I have herniations, stenosis, ddd, etc. but this problem is new and it's killing me.
Doctor suspected that because of back pain, my walking is not right and it put a lot of stress on a pelvic area, causing hip/pelvic bones move in a wrong directions. I also have metal clips in a pelvic area since first surgery.
I also had 6 previous surgeries (not back related) and some of them on abdom. area too -hate to tell you this, all of them was nothing even close to my back surgery, recovery wise, pain wise.
Therefore you see if they can do anyting to help you before you go for surgery. I learned on Interned a lot about sij dysfunction, there are a lot of options available. And if they don't work - you a candidate for surgery,i guess. A lot of us here went and go through this and you will too.
As i understand quality of your life now is poor - so why not to improve it, right?
good luck to you and hope your Doctor will find something to be helpful to you.
 
Charlyssa, welcome to my club :-(
I had 2 levels fusion, SI Joint plate (abriviiation for the joint you are talking about) and a lot of other stuff.
Let me tell you: 6 month after the surgery i did not feel pain in that joint, but now i can't step on my left leg, feels like somebody puts the knife through my bottock (right in a middle) with each step. Pain goes to my left hip back/side/front and down to the knee/leg/foot. I was admitted to the Hospital couple of month ago with pain at level 20 from 1-10. I was on Morphine and was not allowed to get up from bed for 5 days.
I saw another Doctor a week ago and when he pressed in a middle of the bottock exactly where pain is - i saw stars.
I did have shots: 3 before the surgey and 3 after. I was in a worse pain after the shots than before and it still did not relieve any pain. Now i just refused to have more done since i don't believe in it anymore in my case (6 shots more than enought to prove it).
Where is your pain exactly? I feel so bad knowing what you are going through. I am afraid i will have this time (i will have a second surgery, first one failed) i will have 3 levels fusion + SI Joint fused also.
Let me know how are you doing. I am very glad i find you who got the same joint invalved and we can share our experiense (some experiense, ha?)
Feel better!
 
Charlyssa - I'm going through what you are right now, but only on one side. Find an orthopedic or spinal doc and ask if the are familiar with SIJD before you go - sounRAB lots lots of docs miss it. I frequently hear that when your pelvis is out of alignment, the main prob with Sacroiliac Joint Disorder, youcan't see it on an xray or MRI....mine was only discovered by a very experienced PT that my ortho doc sent me to. Try PT before anything invasive! Once the PTherapist corrects my pelvis, I'm fine until it slips out again, then he can get it in again when I see him next. Meanwhile I'm doing all the exercises he gives me to strenthen transverse abs, glutes, and lats, and ti's getting better after just 8 weeks. Watch, too, that you are very careful the second half of your menstrual cycle, as the hormone relaxin will make your ligaments loosed and allow the pelvis to go "out" even more easily, causing more pain. I think the trick is finding a PT, through your doc, who knows how to adjust your pelvic bones to relieve the sacral pain.

I forget, have you had a diagnosis?
 
Thank you for your replies Moldova and Moptopjen!

Moldova, I understand what you are saying about trying to improve the quality of my life, because yes, this pain is killer and it ruins my life. I guess I misunderstood - I thought you already had SI surgery and were still suffering. Did they explain exactly what they would do during this surgery? And is it guaranteed to help, or reverse the problem? I guess I am afraid that I would go thru the surgery and not be any better...or that the problem would return.

This especially concerns me after reading what you wrote, Moptopjen, about the pelvis being out of alignment. I can be nearly 100% certain that this will be the problem with me, and there won't be anything they can do about it. The reason for this is because I also have scoliosis...and if you are familiar with this, you know that the pelvis is permanently out of whack and cannot be fixed. This is what I believe caused my SI to begin with. The bottom part of the "S" curve, which is in the lurabar area, causes the pelvis to tilt up on one side. When I sit, I actually "list" to one side somewhat. When I walk, it causes an uneven gait, as if one leg were shorter than the other. Obviously this continually stresses the lower spine and pelvis and further irritates the SI. So you see, I'm not sure how or if SI surgery can correct this. The ortho I went to had seen my lurabar exrays and I don't think the SIJD was noticed. However, when I explained my pain and its location, he had me lie on my back, cross one leg over the other at the knee, then he pushed down on that leg. I saw stars!!!! the pain was so bad. That is when and how he DX the SIJD. He gave me injections which were excruciating and it took a few days to recover from just the injections! When I did, the relief from the injections was so minimal they hardly made much difference, so I never went back. He never mentioned surgery, so I figured there was nothing left for me that would help...and I'm still not sure there is, because of the scoliosis problem. It's pretty frustrating, to say the least.

What are the exercises I could do? I think I'm afraid of even doing this because the more I move this area the more I hurt. The best relief is to lie in bed!! :(

BTW, I am in menopause so I don't have perioRAB anymore, and haven't had them for 10 years. The problem actually started while I was in menopause already. I don't know if this makes any difference or not..? Thanks both of you.

Char :wave:
 
Hi Moldova!

Thank you much for responding! Yikes..you have really been through it and I am sorry. *hugs* It sounRAB like your sciatic nerve has been affected somehow, and I guess I'm surprised I don't have the same problem with that. I know that nerve pain can be excruciating..like you needed MORE pain, right??? :( I also am sorry you need to have more surgery, but I will hope and pray that this time will be successful!!

As for me, my pain is on both sides of the very lower lurabar area of the spine. Besides pain there is stiffness, and it's gotten to the point where I can't hardly straighten up completely anymore, so I'm a bit hunched from that area. I can't stand longer than 1-2 minutes without either needing to sit down, or, if I'm cooking dinner, let's say, I need to bend over across the counter for a minute or so, then I can stand for another 1-2 minutes. :( Walking is the same. It hurts to lie on my back so I can only sleep in my sides now. I'm so scared. I figured I might need surgery and I am terribly afraid of it...and now, to hear that surgery may not even cure it scares me even more. I am 56...my 95 year old mother-in-law is more spry than I am!! Unfortunately, I also have other back pain, too, from scoliosis (which is how I think I got the sacroiliitis to begin with, because I walk with an uneven gait) degenerative disk disease, kyphosis and arthritis. I'm quite a mess! I have pain 24/7 and it has ruined my life. Ugh. Sorry to whine!!! But I guess I needed to get that out because I don't have anyone in my life who has it or knows what it's like so they can't relate, so it's nice to talk to someone who can. But I'm sorry you go through this, too. :(

Did they ever give you exercises, or tell you that exercises would help? I can't imagine what they would be, because the more I move the more painful it is...but I am willing to try anything. Thanks so much!

Char :wave:
 
Yes, i did my share of PT for 5 month after the surgery. I started again a month ago and could not do it:even stretch hurts so much now in that area.
I also can't stand for long, i can't seat for long (the area i call "tail bone" hurts terrible). Also very common symptom for SIJ is when you want to pick up your leg to get in a car or any movement which makes you lift your leg, twist a bit, shift your body - hip/spine/bottock is killing you.I also have stenosis, degenerative, arthritis - nice corabination, is in it? :mad:

I am at the point that i wish to have surgery done again just go be normal, just to be able to walk and have less pain. This is not life anyway, surgery may help to go back to normal - so that is how i feel and that is helping me to go through thougts about another surgery. I would rather go thru another one than to hear from a Doctor "learn to leave with it". This is really scary when they take your hope away...

I hope you will go to see couple of Doctors, it's very important to hear what they all have to say, and ask a lot of questions. You write them for yourself on a paper with all the symptoms and be ready to ask. Than you decide what do you want to do. Very important to know why do they suggest surgery, do they expect if it may be helpful in your case. It is very hard when it comes to your back - seems there is no one easy answer for you. But at the end of the day - you will get all your info in a place and will go from there.:confused:

It's easy to say "don't be scared", but in a reality you set your mind that this is only way to get better and you kind of talk yourself that everything will be OK. Just make sure you in a good hanRAB, make all your preparations at home and at work and you will be fine. I did my "homework" a month before my surgery: i put things in a closet to be reachable; cleaned kitchen cabinets and made sure all the things i will need are on a lower shelves, etc. It helped us very much.
You can read all this info on this board, people share their experiences before and after and it is very helpful. People here just great, God bless them all.
Good luck to you - we are always here to help!!!:wave:
 
Hi! I have arthritis in my SI joints, and have found relief from the injections (I get them every 3 months). One suggestion my doctor had, if the injections stop working, is having the SI nerves radiofrequenced (pain nerve burning). I have had this done with the lurabar pain nerves, and it worked well for me. The success rate with the SI nerves is not as high (50%), so it may not be the greatest option. But, it might be something to look at before you consider surgery. I have also found relief from some stretches my PT taught me. Other PTs before her knew nothing about SI problems, but she did, thankfully. I do think a lot of doctors overlook SI issues. Good luck, I will be thinking of you! SI pain is no fun, and sitting for me is always the worst. Kera4
 
Hi Moldova :wave:

Ooooh, I know EXACTLY what you mean about lifting a leg to get into a car! I have the same problem. I guess I can understand having PT after surgery... but did they ever have you do that before surgery to see if the problem would improve? One thing that helps somewhat is a heating pad, but it's only temporary relief. I feel sooo crippled and I hate it. We are supposed to go to an art fair this week end and I so enjoy them...but it means walking a lot so I have to sit down often, IF there are seats available. Everything..my entire life..is dictated by pain. I am so sad and frustrated. :(

I think you are very brave to want to go through surgery again. I don't know if I can do it or not because I am so afraid of it, but maybe I will think about it more?!? I see so many people here who have had surgery and I marvel at their braveness. I don't know why I am such a baby about it...maybe because I have had 4 abdominal operations and the pain was so bad, so I am not anxious to go through that again.

You make a lot of sense in everything you say and you are right, I should see at least one more dr. The one I saw only did the cortisone injections and he never mentioned a thing about surgery. How long did it take you to fully recover after surgery and was it very painful? And exactly what did they do? I really don't understand too much about this surgery...maybe I need to in order to make a decision before I even see a dr. Sometimes I don't understand too clearly what they are saying because it's all "doctor-speak" and they have a tendency to forget they are dealing with someone who is not only afraid, but has never gone to medical school!! :rolleyes:

Thank you for all your help - it's so appreciated!

Char :wave:
 
Hi everybody, I'm new to this. I have sacroiliitis for many years, too and I have been on anti-inflammatories and salozopyrina for many years. I've never been offered any other treatments, but I now feel that it can't go on like this and I'll have to go to a doctor and finally tell them how bad the pain really is.

I have scoliosis, too, this is what may have caused it. But it has also been hinted, that I proberbly have Ankelosing Spondylitis, too, but because I'm negative for HLA- B27, it is not easy to diagnose it? I don't know.

But like you guys i'm in pain all the time and always hoped that some day it might be healed, I so loved hiking, walking and all sorts of out-door activities - I just can't believe that is really is all over!

Anyway, I'd love to hear from anybody with similar problems, as i don't like talking about it to anyone normal!

Kindest regarRAB to everybody,

Katrin
 
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