I'm 25 and have been misdiagnosed for about
2 years before after help from google, I had to suggest to the many specialists I was seeing that it sounds a lot like sacroilitis. I suggest you also look into Ankylosing Spondylitis. My pain began when I was 22. When I was 23-24 I was in pain SO severe that I couldn't walk. I had to have 2 people pick me up to sit me on the toilet. I was always on crutches. The pain was unbearable and my life surrounded around it. The scariest part was not knowing why and doctors simply just not caring about
me and just sending me off to physical therapists. Personally, for me, PT was the biggest waste of time. I've seen about
4 or 5 different therapists at different clinics who actually claimed to "specialize" in arthritic type pain that had no idea what was wrong to me and just gave me exercises I could barely do and if I could do them, at first, I was very optimistic about
the therapy but after a year of doing my exercises hardcore and wasting so much money, time with my condition getting WORSE...I do not suggest anyone with severe sacroilitis waste time with PT.
I've tried everything. Every drug, seen every specialist. There was just no explanation. Because of this I am very knowledgeable when it comes to SI joint pain (way more than any other specialist, I truly believe) so I hope I can help you and others that may read this who are trying to diagnose themselves and/or are desperate for relief.
- I am incredibly hypermobile (very flexible joints especially hips/shoulders/fingers) and was diagnosed with Ehlers-Danlos syndrome. Which, again, I had to bring up after self-diagnosing myself with it via Google. So if you are hypermobile check into EDS. There is no cure, but just to know you have it helps.
- I've had so many MRIs, MRAs, CT scans, x-rays, and ultrasounds it's insane. At first my first stupid orthopedic surgeon I saw was sure I had a herniated disc -- MRI found nothing. I went through about
3 more specialists before one finally said, looking at the very same MRI, that I have SEVERELY OBVIOUS inflammation in both SI joints. He couldn't believe other specialists missed this. So I recommend getting your MRI read by many and if a doc says they are "pretty sure it's a herniated disc" that's usually the first conclusion doctors jump to for any lower back/hip pain.
- After this I had another MRI to get a better view of the SI joints (x-rays are good at picking them up as all, and easier scans in general obviously). But it was also found I had 2 hip labral tears. Which is another thing I already diagnosed myself with on Dr. Google but no one listened to me until 2 years later. This then led to having hip injections to see if that relieved any, I wasn't sure. But we proceeded with surgery called hip arthroscopy for both of my hips (with months in between) I was so excited, sure that this would fix some, if not, all of my pain. Not the case for me. The pain came right back after both surgeries, no help whatsoever. The surgeries themselves went very well, I recovered very quickly, but no change in the unbearable pain.
- I've tried every narcotic available aside from oxycontin because my insurance doesn't cover it for some insane reason. Because of this, oxycodone is my lifesaver. People who say they can't take it because the side effects, either you don't have pain severe enough to put up with side effects that are nothing compared to the pain, or I just have a body that can handle narcotics much better?
- I now take 150mg of oxycodone at one time. And 50mcg Fentanyl patch. At this rate, I hardly feel the oxycodone because I've become so tolerant. It has always just taken just a bit of the edge of my pain and calmed me emotionally pain-wise if that makes sense, it has been a lifesaver for me. My doctors don't prescribe me as much as I need and I go through hell every week when my prescript
ion runs out early. I am in genuine pain and need it for legitimate reasons -- but I won't get off track here :) If you are in horrible pain you would be able to get past the nausea that lasts maybe a week when you first taking them.
- I also got diagnosed with Ankylosing Spondylitis -- which I suggest anyone with SI joint problems to look into. Many people with sacroilitis also have AS, they are almost interchangeable. Some doctors think they are, some don't. After I got diagnosed with this I did try Enbrel. Aside from oxycodone, Enbrel is the only thing that has helped me. I could only get around by either getting on the floor and just dragging myself or, if I was lucky getting up on crutches. It's been just about
a year since I've been on Enbrel and I have been able to walk every single day since about
being on Enbrel for 2ish weeks. Enbrel has really helped the pain especially in the butt. I highly recommend anyone try Enbrel. And again, if the pain is severe enough where your life revolves around it, I highly suggest Enbrel.
- Also look into SI belt/shorts. I have a belt/short combo after trying just the belt, it's much more heavy duty. It's not a huge relief but really helps with walking.
- A TENS unit is worth looking in to. Not the best thing, but can provide slight relief. The only beneficial PT once did is they did electroshock therapy on my butt basically, and it was 10 minutes of heaven. I wish there was just a booth you could go to and have that done for $2(you can't buy the machine). TENS unit is like the baby version of that.
- I feel your pain of being young. I really just don't understand why I have this. I have no family history, I have always been extremely healthy and active. Now I'm gaining weight and my whole life still resolves completely around this. It's like my doctors are giving up on me. I've been getting passed around from specialist to specialist, no one can figure me out and they are all hesistant about
my high narcotic use. I just took 45 pills of oxycodone. That's right, 45 PILLS. (I have the kind with no tylenol though, which are stronger and also way better for you). I'm only 25 and have no life aside from pain and doctor's appointments. I have a job where I sit all day but I had lots of hopes and dreams for my future. I just don't get it, but I wish you the best of luck to find relief. Hope I provided you with some suggestions though!
Post Edited (zildjiangirl) : 10/23/2011 5:32:53 PM (GMT-6)