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Posted 3/13/2013 6:32 PM (GMT 0)

hi im  a 26 year old female and i was diagnosed with sacroiliitis in my left hip and lower back when i was only 13 i had just started secondary school, i went to bed one night woke in the morning unable to walk and screaming in pain my sister who was only 15 was carrying me back and forth to the bathroom she finally phoned an ambulance and i remained in hospital for 5 months while they tried to figure out what was wrong with me, eventually i got taken for an mri and thats when they finally started treating me properly because up till that point i think they thot i was lying to get time off school, my pain was so severve i had physio therapy and had to learn how to walk properly again after 5 months in bed. when i went back to school i was signed up for 3 years of standard grade p.e as i wanted to be a p.e teacher but due to the severe pain i had to drop out which was really hard for me to deal with, all my friends were out enjoying there lifes and i was stuck at home in constant pain. like i said i am now 26 when i left school i decided i wanted to become a nurse so thats what i did and have been doing it for 11 years now. I struggle everyday with this and i do 12 an a half our shifts 4 days a week and sometimes i am crying while walking home as the pain is so severve but i continue to push myself and i am determind not to let it ruin or control my life but i just came across this website and im so glad there is other people to talk to and if there is anyone out there who is struggling with this please do not hesitate to contact me.

Posted 3/14/2013 12:50 PM (GMT 0)
Sorry to hear you are in so much pain. Are you seeing a Rheumatologist and taking medication for your sacroiliitis? Have you had more scans done since your first one? I'm surprised you're in so much pain without your Primary care Doctor managing your pain for you.
Posted 3/14/2013 11:13 PM (GMT 0)
hi there thanks for replying.Im sorry to hear how much of rough time of it you have had and all the different meds they have put you on, which i truley believe sometimes gives you more problems than solutions!! I am currently no longer recieving anymore meds and am hoping that i can carry on like this although it seems doubtful.I am also know longer with my primary care doctor as i felt he was not doing his best to help me so i have decided to go it alone. Alot of the medications counteract with eachother and make you feel like crap.Im all into trying to treat my pain the more natural route/alternative therapies i am going to do alot of research on this and hopefully will find something that really works and means i am not poisoning my body along the way with all the different meds. So if you know any natural remedys please let me know e.g change of diet,I also heard that a gluten free diet works wonders and over time you start to feel a huge improvment in the amount of pain you are feeling, i do not know if this is the case but i am willing to give it a try but please let me know if you have also heard this or have heard of anything better. I hope you feel better soon.
Posted 3/23/2013 3:17 AM (GMT 0)
Thanks for your well wishes. The only alternative treatments I've tried is acupuncture, which didn't work for me but may work for others. I tend to be very careful about what I take in to my body in terms of food and other alternative remedies as, due to the Crohn's, I already have a myriad of food intolerances. I haven't found cutting out gluten etc to work for me but I would also never tell you to rule it out. What doesn't work for me may work for others.
Posted 12/8/2013 1:45 PM (GMT 0)
i am a 18 year old female,and was also recently diagnosed with sacroiliitis.At first i was positive and hopefull that i will recove but hearing all these people that say they've been having it for years scares me.I am a very active person that loves sports and at the moment i cannot do any physical activity because of the pain i am suffering from.At the moment i have difficulties walking and bending and sometimes i can barely climb the stairs,i cannot bike or ski which are my passion.Just the thought of not being able to do any kind of exercise anymore kills me.I've been searching for people that have recovered from this but all ive found are people that have suffered from it for years.im currently taking sulfasalazine and ibuprofen but im sceptic i think that they will make it worse till the point where the wont have any effect !! I would really like to hear about other alternative remedies,and to know if there is a possibility for me to go back to where i was and do the sports that i do.
Posted 12/8/2013 2:02 PM (GMT 0)

virtualterror said...
Thanks for your well wishes. The only alternative treatments I've tried is acupuncture, which didn't work for me but may work for others. I tend to be very careful about what I take in to my body in terms of food and other alternative remedies as, due to the Crohn's, I already have a myriad of food intolerances. I haven't found cutting out gluten etc to work for me but I would also never tell you to rule it out. What doesn't work for me may work for others.

i would like to hear about your progress
Posted 12/8/2013 11:31 PM (GMT 0)
Welcome to Healing Well, florindasejfullai! First, you can have an active life though you might have to give up some sports and pursue others. Are you seeing a rheumatologist? What diagnosis or disease did they say is causing your sacroiliitis? Sacroiliitis is always caused by something.

I have ankylosing spondylitis [AS]. The hallmark symptom of AS is sacroiliitis. With proper medication, I mine is under control and I am able to do most everything I want. I had to give up skiing because of the fragile nature of my bones, but that is more from my age and other issues than the AS.

Most of the people that post here are newly diagnosed like your self, or they have severe cases. Almost everyone can get their disease under control with the proper medication. Also, it sometimes help to have the SI joints injected with steroids. This gets them calmed down quickly.
Posted 12/9/2013 6:43 PM (GMT 0)
I am seeing a rheumatologist.I had an X-ray ,MRI,ct scan done and according to the ct scan the sacroiliitis was caused by a trauma in the sternum.I don't know the exact cause but I believe that I had a trauma in the sternum while I was skiing last year.I had a small accident but I didn't get hurt or anything,I was fine at the moment but the problems started after 1-2 months.I started having pain in my chest then in my hip.Having to give up skiing would be a tragedy since its the thing I love the most.I really want to find the right treatment but it is so confusing because for some people some things are effective and for others its the total oppsite.Some people use steroids and for some steroids don't help some use si belts some choose physical therapy or only medicines like Ibuprofen or sulfasalazine some people do exercises or walk others rest or some even choose surgery as a solution which I've heard doesn't always give positive results ..... My mother is a doctor so she knows the side effects of the various possible treatments and she avoids steroids.I don't want to use steroids either ! Has anyone recovered ?? Up until now I've only heard of people that are suffering for years ...
Posted 12/9/2013 8:14 PM (GMT 0)

Ides said...
Welcome to Healing Well, florindasejfullai! First, you can have an active life though you might have to give up some sports and pursue others. Are you seeing a rheumatologist? What diagnosis or disease did they say is causing your sacroiliitis? Sacroiliitis is always caused by something.

I have ankylosing spondylitis [AS]. The hallmark symptom of AS is sacroiliitis. With proper medication, I mine is under control and I am able to do most everything I want. I had to give up skiing because of the fragile nature of my bones, but that is more from my age and other issues than the AS.

Most of the people that post here are newly diagnosed like your self, or they have severe cases. Almost everyone can get their disease under control with the proper medication. Also, it sometimes help to have the SI joints injected with steroids. This gets them calmed down quickly.


Thanks for the response btw,it means a lot
Posted 12/10/2013 6:26 PM (GMT 0)
I have a hard time understanding how a trauma to your sternum would cause a problem in the sacroiliac joint.

Have you been referred to a physical therapist?

I am an active person and someone who loves skiing, too. I have struggled with pain in my SI all of my adult life, and sometimes it will be worse than others. Many imaging studies of my lower back have identified some arthritic changes in my spine (L5/S1), which is pretty common in people my age. It might have to do with my SI pain, or not. No one can say. More likely is that I have a hypermobile pelvis, and my SI is often "out," meaning my pelvis is not properly aligned. This becomes a problem when I jog too many miles per week, but if I were diligent about maintaining my core strength and stretching my hamstrings, groin and back I could probably avoid a lot of problems. This is key in managing sacroilietis - you really need to maintain a strong core and pelvic girdle to protect this joint.

My main approach to managing my SI pain is to stop running. I now use spinning as my main cardiovascular activity, or biking, and it doesn't bother me at all. I walk a lot and sometimes jog, but not for much distance. I haven't skied in a while but frankly my SI never bothered me much while skiing (I'm old school, one leg at a time kind of skier).

HTH.
Posted 12/11/2013 3:43 PM (GMT 0)
I've read that chest pain is one of the symptoms of ankylosing spondylitis which worried me a bit because I've had chest pain and I still do sometimes,it depends.I am not seeing a physical therapist but I want to do physical therapy because I've read that it has helped a lot of people so ill visit a physical therapist as soon as I finish with the medications-sulfasalazine(3x a day) and ibuprofen which I avoid .
Stop running !!? Well I am not able to run at the moment but I want to be able to in the future.I bike too and I biked even after I was diagnosed which made it worse. I like walking but I don't because. according to the doctor I should rest .But its only temporary of course till it gets better ... If it will
Anyways thanks for the advices :).it helps to see how others treat this problem
Posted 12/11/2013 4:06 PM (GMT 0)
Your DR should give you a referral to a physical therapist now. There is no reason to wait.
Posted 12/12/2013 9:43 AM (GMT 0)
So physical therapy is the best option ...i guess
Posted 12/12/2013 12:34 PM (GMT 0)
I was diagnosed with sacroiliitis and ankylosing spondylitis almost two years ago. I was walking by using two canes and just trying to lift my foot high enough to take a step made me feel like I was going to pass out. I walked in inches instead of strides and trying to get my legs into bed was almost an impossibility. I was given ibuprofen with food and also a muscle relaxer called Robaxin, since I was not willing to use Humira or Remicaide, and I now am back to no pain with walking, etc. It took a while for thing to settle down but, like Ides, I can do most anything I want. I am careful though.

I like to keep things more natural, too, but sometimes we don't have a choice. I do hope you find what will help you with this. It's just a terribly painful condition.

Sherrine
Posted 12/12/2013 4:45 PM (GMT 0)
florindasejfullai, have you been diagnosed with ankylosing spondylitis (AS)?

Sacroilietis is much more common than AS. People with AS frequently have sacroilietis, but people with sacroilietis don't usually have AS.

Physical therapy is an excellent option no matter why you have sacroilietis. But if you have AS, medication to control the disease will be an important part of your treatment plan.
Posted 12/13/2013 3:23 PM (GMT 0)
No I was not diagnosed with ankylosing spondylitis
I will definitely try physical therapy as a part of the treatment and I recently read that diet plays a role too,like vegan diet or gluten free diet .I guess that depends on the person ...
Posted 2/3/2014 4:36 AM (GMT 0)
I was diagnosed with sacrolitis when I was 18 (now 22)… I have tried physiotherapy, massage therapy, dietary changes, exercise, yoga, medication and am now on a waiting list to get my first cortisone injections into both of my SI joints.

I believe it is all about finding what is best for your body… I can sometimes maintain no flare up for a month or so (just minor pain here and there- but not the excruciating sharp pain that makes me unable to move) by light exercise (i find swimming to be good for my back and very light yoga).

You need to figure out what activities you are doing during the day that is triggering the pain… I know it is hard because sometimes it doesn't happen all of a sudden. But personally I notice that laying down for a long time hurts it the most.

There are a few studies that have linked vegan diets to reducing pain (as you said you were more interested in natural solutions I would suggest looking into that). I was shown these studies by a nutritionist I went to for my back.

I have tried naproxen, aleve and celebrex for medication. I find they all do about the same thing… take away about 30-45% of the pain to make it bare able.

Has anyone had cortisone shots in their SI joints? Side effects? Pain? How long did the pain reduction last?

ANY HELP WOULD BE GREAT
Posted 2/3/2014 4:46 AM (GMT 0)
I generally have my SI joints injected with steroids about every 9 months. Sometimes it is only 6 months, sometimes it lasts over a year. It really helps minimize the pain in my lower back and buttocks. The main thing is you need to find the cause of your SI joint inflammation. Do you have a rheumatologist? And if so, what does the rheumy say is the cause of your SI inflammation?

I have ankylosing spondylitis and SI joint is the hallmark sign/symptom of ankylosing spondylitis. If you don't have a rheumy, I strongly encourage you to get one.
Posted 2/4/2014 1:03 PM (GMT 0)
I have had both my SI joints injected twice, unfortunately for me it didn't last more than a few weeks. So it's not worth continuing with. I would definitely recommend trying it though - I know many people who get great mileage out of the injections like Ides does. I also agree with Ides - having a good Rheumy is imperative and finding the cause of your inflammation is the key to finding the right treatment. I also have AS, but I also have degeneration and osteo in most of my spine and neck.
Posted 7/19/2014 8:54 PM (GMT 0)
Hi all,

I have read all your problems. I will request you all to take a VITAMIN-D (D3 and D2) test .
This will really help you. Please read the below article


/www.vitamindcouncil.org/further-topics/i-tested-my-vitamin-d-level-what-do-my-results-mean/#


The main reason is vitamin D plays major role in our body. This will absorb calcium from the food we intake and distribute to all bones. If we have less vitamin -D (less than 30) then bones will not get sufficient amount of CALCIUM and your bones become weak. This is all what i personally experinced.
And if you have feel my statement is wrong please browse for Vitamin D deficiency Problems.
And this really cure your SI joint probems which im suffering.
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