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Bilateral Sacroiliitis- My Story- Please help me...

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Rheumatoid Arthritis
What did you find most effective as treatment for Sacroiliitis
Chiropractor - 12.5% - 1 votes
Physiotherapy - 12.5% - 1 votes
Osteopathy - 0.0% - 0 votes
Injections - 12.5% - 1 votes
Combination - 12.5% - 1 votes
Other specify? - 50.0% - 4 votes
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Posted 4/6/2009 3:00 PM (GMT 0)

Im a 29yr old female and dx with bilateral sacroiliitis... The pain is constant and unmanageable for me. I have been continously to a chiropractor, physiotherapist who practises acupunture. I have also been to an oesteopath.  I have been on anti inflammatries and pain killers for months . I dont sleep for more than an hour at a time, because as soon as I move the pain is enough to wake me. I use heat creams, heat packs, warm baths, ice packs, sleeping with pillows between my knees, I dont sit for long periods, no lifting, minimal bending, I had a week of rest off work, but to not much relief. I bent over and emptied the dishwasher and almost immediately pain returned. I had some relief from the acupuncture as it releases the tense muscles I have in my lower back, buttocks and thighs, but the pain returns or the acupuncture is 'undone' with 24 hours or so... I am the process of trying to get an appointment to have CT guided cortisone injection, which I am not that keen on, (I have heard stories about infertility, its lack of effectiveness, weight gain... INFO ANYONE???) I may have to wait 3 months, but I dont know where to turn. Im too young for this and it is effecting my entire life. Ive become a burden/bother to my family, boyfriend,lost friends because after I struggle through a day at work I cannot manage to socialise without extreme determination and self convincing that i can which is exhausting in itself. I cant manage to spend a few hours walking around a shopping centre or sit down in the movie theatre comfortably. Play with my puppy, do my housework etc etc. I cannot perform my job properly (I manage a liquor store, alot of heavy lifting, moving, bending, kneeling which lead to my sacroiliitis). I seem to be rambling. It is so hard to get anybody to understand the pain Im in 99% of the time, I have very little time without it... I am wondering if anybody out there have found anything to relieve their pain and discomfort? Even the tiniest 'tricks' they use for relief. Or what treatment has worked the best? I really would like to discuss this further and hear other experiences.

My true hope is that I can get back to full living/working/functioning capacity, lose the 20kg I have put on since I have had this (about 6 months), I use to be very fit and my physical job helped with that. I am almost hoping to have children soon, but have been told I would not comfortably be able to carry them, And would have to be on complete bed rest for majority of a pregnancy. And I want to enjoy a pregnancy! I dont want to be a pregnant woman to whom pregnancy is a hinderance. I want to be the fun, lively, fit self I use to be. This has changed me dramatically, I am a completely different person than I was 6 months ago. I have always suffered from depression, since I was a teenager. This is making a lot of progress and work that I had made with my depression come undone.

Im sorry for rattling on, but I have needed to let this all out (I feel better just doing so!)

Thanks Brie, Australia 
Thanks for listening/reading... Hope to hear from someone....

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Posted 4/6/2009 4:54 PM (GMT 0)
I have sacroiilitis and I can totally relate. It's horrible because I couldn't keep up with my daughter when we would go shopping. I had to sit down every few minutes just to take the pain and pressure off my SI joint. It was horrible. I even started losing strength in my legs. I had two epidural injections. Not to scare you but they hurt! I found minimal relief from them to tell the truth. I'm not really sure if they worked or not. I guess they worked to a certain degree because I was able to get back into the swing of things but only AFTER I had accupuncture in my legs. So maybe it was a combination of those two things. Right now my SI is not inflammed and it has actually been feeling pretty good. But I just wanted to say you're not alone in this.
Posted 4/27/2009 1:36 PM (GMT 0)
G'day fellow Aussie battler, some of us battling harder than others.  I was wondering if you have seen a rheumatoligist, has your doctor refered you to one as they have a wide range of meds to control the pain Nonsteroidal Antiinflammatory Drugs (NSAIDs) and depending on severity which yours sounds severe, drugs such as TNF blockers, read below.

 

Tumor necrosis factor: A member of a superfamily of proteins, each with 157 amino acids, which induce necrosis (death) of tumor cells and possess a wide range of proinflammatory actions. Tumor necrosis factor is a multifunctional cytokine with effects on lipid metabolism, coagulation, insulin resistance, and the function of endothelial cells lining blood vessels.

Blocking the action of TNF has been shown to be beneficial in reducing the inflammation in inflammatory diseases such as Crohn's disease and rheumatoid arthritis.

Abbreviated TNF.

As there are a few different diseases which include sacroiliitis it is wise to cover all avenues so that your condition is treated properly.

I suffer pain 24-7 as well and my whole lifestyle has also changed as I gave up work and things people take for granted like taking a bath or wiping your but become a painfull ritual.  I am 37 and have been diagnosed with Ankylosing Spondylitis for 5years and had pain since I can not remember. 

look forward to hearing from you again and again welcome.

Posted 4/28/2009 1:10 AM (GMT 0)
Hi Brie, sorry to hear you're in such pain. Do you see a rheumatologist? The other avenue is a pain management clinic. I don't have sacroiliitis but do have osteoarthritis in my lower back along with Psoriatic arthritis. My right leg is either with numb patches or shooting pain, my back just aches. My rheumy put me on prednisone which really helped push the pain into the background, but after 2 years I have come off it, hated the side effects. My GP put me on an anti depressant to try to numb the nerve reactions but I couldn't handle the side effects of that either. Lasted 6 weeks. Did help abit for some pain though. I've seen an osteopath and tried the Alexander technique to help with posture and movement. I'm trying hypnotism to help me relax my muscles when I'm stressed. I guess I'm saying don't give up. There has to be something out there to help you manage the pain and we are here to help you vent your frustrations. Go back to your GP and ask for help, give them your full picture and best of luck. Golitho (another Aussie) (I find the chronic pain site great support)

Posted 7/1/2009 5:54 PM (GMT 0)
Brie,

Not sure if you are still checking this post but thought I could help. First I guess I have to ask if you have a diagnosis of ankylosing spondylitis since sacroilitis is so characteristic of that disease. Also, since regardless of what disease you have..you do still have inflammation in your sacroiliac joints like I do. Over the years I have experimented with different meds to try to control it and fortunately there are more choices than ever. They aren't always for everyone though as they certainly come with different risks and side effects. Sounds like it would be worth it though in your case. I'll give you a list from lower side effect risk to greater risk. First are NSAIDS they include: diclofenac, naproxen, meloxicam, celecoxib and others. Some are not as effective as others but seems to be a personal thing. These drugs work for milder symptoms but are also great for taking some of the worst of the pain away. Next we have more serious stuff like hydroxychloroquine (Plaquenil) and methotrexate. They are generally more effective but take longer to work. Stronger drugs that must be injected and carry infection risks are drugscalled (TNF) Tumor Necrosis Factor Inhibitors like Enbrel, Humira and Remicade. They are hard core and generally one of these or a combination of TNF inhibitor plus another class of drug should get inflammation under control. Of note, they don't work fast and may take 2wks or up to 2 mths for full effect depending on the drug.  If you have any questions about the drugs let me know.

Posted 8/7/2009 1:44 AM (GMT 0)
Hi Brie

I'm in Aust, im 27 and I have the same god darned thing. I hope you get this post as it seems like your in the same boat as i am - pain, depression, difficulty coping yadda yadda. Im told the pain stops when the joints finish fusing. Anyways, if you get this post, message back, maybe we can have a chat and help each other out

Shanno
Posted 8/9/2009 2:04 AM (GMT 0)
shakehead I am so sorry for the pain you are in... I too have the same thing.. also fibromyalgia and rheumitoid arthritis. So I understand the pain you are in. I am just now in the beginning of seeing a rheumy doc.. I too have tried pain shots and the only lasted a few days. So that is out for me. Their in the process of trying some new meds on me. Mainly to stop the progression of the joint deformity. But also trying to find pain meds that do not hurt my stomach. I guess i just wanted you to know sweetie that you are not alone in your journey. Pain may just be another factor in the daily living.. I just hope you can at least find something to calm it down, it is very exhausting to be in pain 24/7. sad I will say many a prayer in hopes that you find the relief you are so anxiously looking for. good luck!!! Laura U. S.
Posted 12/4/2009 3:39 AM (GMT 0)
 

  I'm new here but have some info that may be helpful.  I started having IBS symptoms 2 1/2 yrs ago.  And the worst was sacroiliitis.  I had therapy that helped some, but then went gluten-free.  I figured since celiac disease is in my family I may have celiac disease and I knew that with adults it can take quite a while to heal.  But was not sure I had it.  It did take almost 2 years but the SI pain did get much better and after almost 2 yrs the worst of the IBS symptoms were completely gone.  Then this fall I started a 'gluten challenge' and though I found I didn't have celiac disease, I did find through an upper GI that I had a lot of inflammation.  My SI joints have become very inflamed after 3 1/2 months on the gluten challenge.  And my IBS symptoms (gas and bloating) have also gotten much worse.  I hope my experiment will help my siblings and maybe others.  I'm having a test for 'gluten sensitivity' this week.  Through lots of research I've found that it can cause the same problems as celiac disease.  I fully expect to greatly improve in the next few months after going gluten-free again and will definitely do it for life.   For those who decide to go gluten-free give it at least 1 to 2 yrs (with no cheating).  I found a great bread recipe and discovered that going gluten-free isn't that hard after a couple of months.

Posted 4/1/2010 1:46 PM (GMT 0)
My daughter has bilateral sacroiliitis and it is belived to be caused by rickettsia.  It has been extreamly painfull and she has been completely unable to move or get out of bed. It has resonded well to Doxycycline. Pain well under control in only a couple of days.  Early days though so no idea on long term treatment.
Posted 5/26/2010 6:30 PM (GMT 0)
Hi Brie1979 my call sign here is chronic. I know how you feel and can say that i have had this injury bilateral for 20 plus years iam now 46 years old i first got my injury at work in 1990,and have made a go at life ever since but believe me it hasn't been easy either,many days on the floor in severe pain cant walk cant wipe my own butt sometimes because of so much pain,and i was always very active before my injury ,Hunting ,fishing, Martial Arts,biking ,dancing,running i think you get the picture,and i still maintain my weight because i know if i don't i will suffer even more.I have been to 5 orthopedic surgeons,7 different kinds of 3 to 6 week long physio programs,and just recently to Vancouver to see another orthopedic surgeon which has recommended that i get my sacroiliac fused together by a neurosurgeon down in the states. This could be something for you to look into,but wait till i get it done (i no how long will that take) i think well with in this year of 2010. My prayers go out to you and hope you can carry on your friend in pain  chornic
Posted 1/25/2015 7:32 PM (GMT 0)
I too have sacroiliitis :( every morning I get up and my back is so stiff I'm afraid to crack it in fact my back is always stiff :/ My shoulder is stiff and hurts constantly my hips are swollen and tender to touch :( my leg feels like it's falling apart .. I can't even lift my left leg as high as my right can :( it sucks . I try walking though at least every other day but the bone spur on my left foot makes it nearly impossible to do 30 mins and do some yoga stretches I also get injections which are temporary :( I'm only 26 !!!! I've already had 9 injections (4 in my si joint 2 in my spine for my slipped discs 1 in my foot 1 in my hip 1in my shoulder)The dr told me he wanted to make sure He didn't miss anything (this has already been 4 years) to make sure I don't have any inflammatory disease (my grandma has lupus !) so not sure if I have something else been going thru this pain for nearly 4 years :( I have not been able run run or lift or even walk half the time now :( super frustrated since I have a desk job and nothing helps me get thru the day not even medication (unless I'm on the wrong stuff cuz I've been using mobic) someone tell me if my dr is jus not doing it right or something :( I just want to go back to doing wat I used to do (running Muay Thai volleyball horse back riding hiking and climbing) it's so not fair and top of that I want a baby so bad :/
Posted 1/27/2015 5:17 AM (GMT 0)
Have you been to a rheumatologist, DxKsweetheart89? If not, you need to go to one, preferably one that knows something about spondylitis! Bilateral sacroilitis is a hall mark symptom of ankylosing spondylitis.
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