As how to get a diagnosis
Hi
I am new here. I’ve been dealing with lower back pain since I was 18 (now 43) I was always told as a kid I walked like a duck with my feet pointed outwards. I’ve always wonder if this has something to do with my lower back pain?! I’ve been living with this pain until it got to a point where I could barely move sometimes. So I started seeking help and was passed around from pcp to pcp and eventually was diagnosed with anxiety and here came the antidepressants. I was always told it was just in my head. Well I had a bad flare up of this pain that was in my lower back but seemed to be traveling to other parts of my body (chest, shoulders,knees, ankles and hands. I had the pain be so bad I just about passed out at work. One of my coworkers called me an ambulance and off to the Ed I went. They ran a bunch of test and scans and came back with anxiety/ panic attacks with Costochondritis which was inflammation in the chest and back. This was in 2020 and I’ve been on a downward spiral ever since. There are days I can barely walk my joints are so stiff and the back pain gets unreal. So fast forward to 2022 I finally found a pcp that was starting to take me serious and scheduled me for a mri of the lower back. The mri showed that L4 L5 had small protrusions. So I’ve been sent to physical therapy a few dozen times and still dosent help. Well my new pcp unfortunately passed away and now I am onto another new pcp that has me starting all over again I asked for a blood test to see if they find the as gene but I am on a waiting list that could potentially take up to a year wait in my area of the world. I also asked about seeing a rheumatologist but they said I would have to come in to discuss why I need to see one before a referral can be made. Also they want me to get spinal injections for the L4L5 disc issue because I’ve been having a lot of issues with my si joints as well. I feel no one wants to listen and they just want to hand out antidepressants and muscle relaxers instead of getting to the issue causing all this pain. Any insight would be great. Thanks for taking the time to read my rant. 🙏🏼
Hello, I am so sorry this is happening. It is so difficult to feel OK when we are not listened to. So the good news is that you have found a place where people will listen and believe you. Many of us find that to be the best part of our community.
AS is pretty much a DIY disease until you get an official diagnosis. So often our advice is about who t see and when. Unfortunately, we are a community of patients so we will offer our best advice based on what has worked for us.
In my experience, the one specialty we must employ with this disease is a rheumatologist. PCPs are great and valuable. I see mine regularly. But my rheumatologist is the only one who calls for AS treatment and diagnoses. I know others have different experiences, but I suggest getting an appointment with a rheumatologist because everything is speculation until you see that person.
Have you been able to see a rheumatologist? I think once you do, you will get clarity on the diagnoses. Let us know how things work out.
best rick
Hi. I see my pcp on June 1st. Hopefully she will get me a referral to a rheumatologist. Also I have been scheduled the following day for my first SI joint injection. Can’t lie I am nervous about it. Not sure what to expect. I am in a Huge flair up of pain as I type this at 3am in the morning. I’ve been struggling with my pain and daily task it’s so frustrating. I hope I am finally getting some where and not just tossed to the side again. This pain is no longer just in my lower back. It has traveled to my shoulders elbows knees wrist chest and my hips. I wake up in so much pain throughout the night I am just glad I found a place I can read up on all this stuff to arm myself with knowledge and take my mind off this pain. I am just hoping my primary care listens to me and gets that referral started so I can get this sorted. So for the ramble and thank you for talking with me. 
- I understand how frustrating this process toward diagnosis is. I am so sorry to hear your flare-up is causing you sleepless nights. Hoping you will get some relief from the SI injections. It's natural to be nervous when a procedure is scheduled and you've no clue what to expect. I haven't had injections in the SI joints. Others here have. I researched and discovered this information - hopefully, it eases your worries about this procedure. https://www.cedars-sinai.org/health-library/tests-and-procedures/s/sacroiliac-joint-injection.html
Being an advocate for your health may be difficult especially when dealing with a "seasoned" practitioner - sometimes they speak at you instead of to you, especially when explaining their thought processes and the following stages of treatment. I hope she takes the time to consider what you are saying and your worries and takes the next step by referring you to a rheumatologist who can really be of assistance to you. From what it sounds like from the above conversation you may not need their referral. Have you looked into rheumy's in your area?
Wishing you relief and success as you head to the PCP on June 1. Please keep us updated. As you wait we have many different articles that may help. Take a gander at the plethora of pieces and experiences. They can be eye-opening. Wishing you well through the struggles, and sending strength your way. Warmly, Rebecca (community moderator)
