Sacroiliitis

Hi everyone! I am a 25year old female and have sacroiliitis. I am looking for help and feedback because I am very concerned about what's going on with me. This all started for me when i was 23yrs old. I had really bad pain in my right hip and legs. I was actually limping and could barely walk. So I went to my doctor who sent me to a ortho and he said I had TENDONITIS in my hip and physical therapy will fix it.

I did physical therapy for 5months and had constant hip and tailbone aligment physically done to me by my PT. Anyways i was painless after the 5months of PT. I thought "i'm better". From here on out my priority was to walk and stay mobile as much as I can to stay stretched out and loose. I hiked all summer and this summer and i'm more fit then i have ever been.

2 months ago which makes it July 2011 I started getting the same pain like i did yrs back but now it's in my left hip and lower back. I went right back to my ortho telling him i'm having the same hip pain again and limping. Any daily activity was aggravating it. nothing took the pain away but resting and it's hard to do nothing when you need to stand to cook or do laundry yada yada. My ortho tells me it was hip tendonitis again and chronic lower back pain then we ruled out radiculitis? herniation of the L5? and a bunch of other things. He said I need to go back into Therapy.

I'm back in PT and PT says i have SacroIlliac Joint Dysfuncton. Honestly, I feel like no one knows what's wrong. im starting to get frustrated. all i know is something is wrong if i have to keep going to PT. What is causing this is all i think. All my follow up's with my ortho i end up coming home with a diffrent diagnosis/clean xrays and mri's and i feel like no one knows what's wrong other than i always point pain to my hips and si joint.

I started wearing a sacroiliac joint belt to hold my hips in correctly cuz my hips are not staying aligned. Just from that alone my whole body is over confinsating for everything being outta place. my hip kills! even now my right hip again! so both! sometimes i find myself crawling upstairs and my legs hurt so bad along with swollen feet, numbness of legs and constant flare ups that are just making me depressed and uncomfortble. I can't sit for long, stand to long, bend down without pain, lift laundry, and sometimes when the flare ups are bad i'm crawling upstairs and shuffling when i walk holding my hip and back mixed with killer leg pain. i just want it to stop.

I started taking NSAIDS my ortho prescribed. Naproxin did not help so now i am taking a diffrent type of NSAID that seems its also not helping. The pain just doesn't go away! yeah a few days i feel better then others but that hip pain is always there in my SI joint then if i do anything more than ten minutes the legs come on and i need a break to rest before i can do anything else. I'm 25....why is this happening?

My next step is to have a SI joint injection. which is funny cuz my ortho said both xray and mri have no inflamtion and are "clean".... why do i need a shot for inflamtion then? and why do i have sacroiliitis which means inflamation? Which is wierd cuz in my xray and mri it showed no inflamation... What is going on? I know a injection helps mask pain and shows yes my si joint is the culprate but what comes after that? more shots? i can't live with that cuz every shot for this u r put under...Now i have a pain managment doctor i have to see for this injection. so many doctors =/

Come to find out my ortho is not even a ortho thanx to my PT's looking into it cuz whats happening to me is kinda rediculus cuz something is wrong and all these misdiagnoses and problems i'm having isn't right when i'm wearing a belt at 25yrs old! AND find out my "ortho" is not a ortho. i think he is a phyiatrist??? i'm not sure... but i did not even know this cuz i was told he was a ortho... to top it off he did not believe the SI joint can move and is fused which every joint moves come on! so me and my "ortho" kept bumping heads. Am i ever ganna be helped? This pain is dampering my life.

I'm glade i have a pain doctor who seems he understands the si joint a bit more but i only spoke with him once for the si joint injection consult so who knows. i just need pain management properly and i need a real ortho. I just can't believe this is happening to me and i'm so glade i found this blog site when i did cuz i'm frustrated and sad about this whole situation. but, i'm actually kinda glade to see others dealing with this cuz in PT i'm the only one with this.

In my research on all this i decided to ask for a HLA-B27 antigen bllodd test because i am matching syptoms to early signs of anklosing spondinitis "AS". i'm just not sure and i wish my doctors would help me out by explain what's going on cuz i feel like i'm diagnosing myself at times. it's sad that i know this more than any of my doctors. I have yet to get a explaination fully spoken to me about what's going on with this and our goal to getting better. they just write it down, send me home and i have to educate myself. when i find this new ortho i am praying he can help me get properly diagnosed before my syptoms become more serious....

i am still doing PT looking for a doctor and hoping i can get this pain managed soon and diagnosed. both my si joints are hurting and i miss hiking and doing what i love. but, to everyone dealing with this i feel ur pain and i hope everyone gets the right help they need. just know that sacroiliitis should be treated asap cuz it is usually linked to a spinal inflamitory disease of some kind or can devolope to it. you have to be treated. so i'm going to continue doing whatever i have to to get to the bottom of this and fix it because i want a better future than this and right now....the pain is just to much and this whole thing is just frustraiting and emotionally stressful. i'm hopeing this new doctor can help and get to the bottom of this. much love to all and goodluck

Post Edited (panda0) : 9/30/2011 10:05:58 PM (GMT-6)

thats awsome =) my ortho also said the same to me and said he missed somthing in my xray and saw something in my spine outta line and thats why we did the mri and nothing showed up.i think he is just looking for alternatives from the si joint cuz he don't believe it. every other doctor says it is the si joint. im sick of the run around. but my ortho won't even talk to me now. or even look at me cuz i come in his office with all the syptoms he does not believe in. i'm glade i gut this new doctor. but i don't even know him yet nor does he know me. this is just so hard cuz i know something is wrong. i'm 25 wearing a belt and flare ups make me unmoveable. something isn't right. i hope after this shot we know more to diagnos =) i just wanna get better and stay better or take what i gatta take to prevent this

I know your pain only too well. I hope you find answers soon.

no call yet about the si joint injection date or no call back to my test request... i've been having to cut back in PT cuz the pain is just so much right now. i've been so sore for days and the slightest task is just making me feel worse. i've been needing alot of breaks inbetween daily tasks and my heating pad is my best friend =) i'm super stiff and tight in my back and hips. i just want this all to happen quicker....

i ice every other day at PT since my icepack busted. but the heat does help a bit. exspecially when i'm hurting really bad at night. i actually talked to my pain management doctor today and he gave me tramadol to take when it's really bad along with continueing my nsaids. i couldn't even walk last night. only to use the bathroom and just walking to do that was horrible. so hopefully tramadol helps when its really severe. thursday i get a blood test for HLA-B27 cuz i asked and he agrees i should get it. i guess my pain dr thinks i am in a begining stage to something maybe along the lines of AS. then i gatta do a si joint injection next. the pain has been so bad at night laytly. i'm hopeing we figure this out soon. i'l keep u posted

Post Edited (panda0) : 9/28/2011 5:09:37 PM (GMT-6)

I'm glad you found something to help you, even if it's a little bit. I can't take Tramadol unfortunately; I'm allergic to it as well as many other forms of narcotic pain killers. It seems that unless it's an opiate, most form of pain killers have some form of codeine. I have a crazy body that reacts strangely to a great deal of things.

Let us know how the appointments go and what you find out okay?

ooo i have my injection in my si joint booked. i go oct 17th and tomorrow i get blood work to check for the HLA B27 Antigen...i gatta make sure i ask one more thing while i'm at my PC's...have u ever heard of Accutane linking to sacroiliitis? i read a little about it in my researching and i did take it 10 years ago when i was young for acne. i don't know if it is anything but i'm still ganna ask.

When I had my injections, I was not put under. It was xray guided and tho it did hurt, it was bearable.

While I do have Sacro, my HLA B27 was negative. But it may be possible that I am at the beginning stages of AS. I just never got to the point where it shows up on testing since I am on two immune suppressing medications. My chiro thinks it's primarily due to my spine but sometimes I wonder.

For pain....ha! That's a tricky one for me! I rely on Tylonel Arthritis and/or heating pads and ice. No it doesn't always work but it helps. I have to be careful when doing things that involve bending for long periods of time. It makes my back and Sacro spasm like crazy.

I'm glad you pursued the culprit of your pain. You know your own body and you know when something isn't right. Finding answers is not always easy it seems!

Just Sacro??? Oh lordy no! lol Look at my signature...

wow thats alot to handle. i'm sorry for your pain. i don't have all of what you do but the sacroiliitis and sciatic. . im glade your medicine is helping a bit. and it's wierd how sacroiliitis is inflamtion but we don't have it. i mean some days i am swollen but all the times ive gotten xrays or mri's its early in the morning and i've showered and not in pain or swollen that early...only laytly i've started getting random inflamation other than my other episode of this a year ago. i also get that super tightness which is no fun =( i'm still waiting on my HLAB27 blood results then when i get that i need to follow up with my ortho/pain dr to talk about it i guess...then the injection in my si joint is next. i hope it brings some relief cause i hate that i have to take tramadol for relief knowing it's a narcotic. the tramadol has been working tho. the sideaffects... i don't like much but i think i'm getting use to it enough that they aren't as bad now. i just hope the shot works for me.

i never had a bone scan ever and i think i may ask for one after the injection wears off maybe. i think it would be a good idea. i really know exactly what you mean with sitting standing and exersize ect. those things have always affected me pain wise my whole life except excersize because just 2 months ago and every summer the past 3 yrs i hike and walked allll the time... it's sad how quick these flares come on and just destroy you for months at a time. it's heart breaking because your limited to doing things you love and they just pass by while your in pain. i just didn't know i had sacroiliitis then and now i do. i had no treatment then. now i somewhat do and i'm so thankful i'm getting the right help to try to manage this pain. This pain affected all my previous jobs. i always question if i'l be able to work again because of this. i know it would be flare filled like my past and be worse for me. i felt handicapped. any job i had i couldn't sit because i was not aloud to. retail =) =( even if i could have sitting hurts just as much as standing. this condition has caused me to leave a job before because the pain isn't worth it. thats hard to except. still is because i'm not working now because of it. idk.

i'm hoping once i have a treatment plan i'l have this better managed so i can at least excersize and hike again. i'm sick of being home bound. i think i'l have to except that i can't do all i use to. i want to be able to be at least active. i hate the pain of this.

lifting, walking, doing so many things and not knowing why all these things are bothering me all at once all the time...



But, today i couldn't believe it! my new meds must be working because i am pain free today =) it's only one day but the past 2 weeks have been the worst. i could go up my stairs and not hold the railing today! and did everything in PT! and my hips are inplace! this is huge for me =) i am hoping this continues because usually after PT on friday i'm sore all weekend shuffling walking and still sore monday when i go back to PT. my goal is hopefully having a pain free weekend for once and go to PT monday not in pain. i'm hopeing for this and i don't want to jinx it =P i'l let you know how it goes.

just keep me updated and i'm sorry for your pain. i'm glade you blogged on here =) sorry i kinda go on and on but thanx for reading and sharing =)

Post Edited (panda0) : 9/30/2011 9:49:56 PM (GMT-6)

hey everyone! long time no talk. i just wanted to update you with were i'm at. i got the HLAB27 test and was NEG. which is great! i have a follow up with my ortho/pain doctor the 12th to talk about the results and how i think my meds are working. i think they are because my pain isn't as bad. still there but not as crippling. also, my hips are staying in! they have been in fo over a week which means i'm getting stronger and strength means holding them in =) yay! i still have my SI Joint Injection on the 17th. i still want to do it so maybe i won't have to rely on narcotics for pain relief. we see how it works. it's always funny how when things are looking good something always gets in the way. i gatta be put under twice for 2 diffrent things now. one:the si joint injection and 2: i now have to have a lymph node in my neck removed =( me and my nose and throat doctor have been watching it every year. its bigger than 2cm so it is abnormal i guess. he def doesn't think its cancer which is good. it's just been there and hasn't got smaller or bigger so we ar ganna take it out to see what it is. i know it's benign from back in 05 i had it biopsyed...but i just wanted to let u 2 know i was negitvie for hlab27 but i'm still showing syptoms i guess cuz i have sacroiliitis. we see where we go from here. i'l keep u updated =) if u know anything about lymphnodes let me know. hope all is well !

yeah the lymphnode is seprate from my sacroiliitis. but i get the injection today at 2pm. i'm soo nervous. kinda excited for the pain relief part but def really nervous. i'l keep you updated and how the shot goes and if i think its working. much <3

thanx Lu =) I had the injection yesterday and i was so nervous expecting the worst. u r not even ganna believe what happened lol i guess i have very small veins cause they had to do my IV on the top of my hand 3 times! they novacaned them too cause they couldn't believe none was taking. i did not eat or drink before it so that was why but 3 IVs layter.... i had to have the anastesiaologist do it himself in the procedure room so i didn't get "pre-sedated" i was laying down on the table already then i got sedated so i was waaaay nervous...but the shot itself...i had no clue what was going on cause the anistisia knocked me right out. honestly the IV's was worse i think. u don't even know about the injection cause ur asleep. i did get wobbley legs too and was thinking and talking all wierd for about 15mins. turned out there was nothing to be worried about. it went fine =) but, to top my luck on the way home my ride broke down on the highway and we had to get towed so standing on the side of the highway wasn't the best thing after the injection but whatcha ganna do. all in all was a very akward day.

after all that, at night, i was sooooo sore. could hardly sit and i was limping and could barely move. they said the meds take about a week to fully kick in i guess. i was ok to take my meds after so i took my tramadol for the sorness last night and it helped.

today is day 2 after injection. i feel alot less sore in the moring but its like 3 now and i'm getting a achy soreness again. i can tell it's just sore from the shot. hopeing this pays off in a couple days =)
Thanx lu!