Hi, everyone. I'm brand new here. I've browsed some of the topics and see so much I can relate to. I'm not quite sure where to start. I don't have the official AS diagnosis yet because my test results don't show anything helpful, and my rheumy wants to see how I respond to Enbrel first. I'm positive I have it, though.

It's a long story how I even got under rheumatology care. I've had increasingly worse neck and shoulder pain since I was 18. I'm 26 now. My muscles are hard and very tender to the touch, they burn often, and I have slight limited movement in my neck. No doctor can agree on a diagnosis or treatment. My old rheumy gave me Gabapentin for it last year, and it helped some with the burning for a while, but it no longer helps.

Moving on to inflammatory arthritis, likely AS. I've had about four flare-ups in my lower back the past year and a half. (X-rays and MRIs were normal as of about a year ago. None since then.) I thought they were random backaches until recently. Four or five months ago, I noticed my finger joints hurt, and then my knees and lower back started hurting constantly about a month after that.

By this time I was with a new rheumy because I felt like my old one didn't take me seriously. My symptoms weren't specific enough for my new one to know which form of inflammatory arthritis I likely had, so she started me on Plaquenil a few months ago, which hasn't done anything. She also did a lot more blood work. (I'm HLA-B27 negative and ANA positive.)

Fast forward to now, after plenty of crying, meds, research, and frustrations. I've been on Enbrel (50) for a week and a half. So far no change. I know it can take weeks or months to work, but I was hoping I'd be one of the lucky ones who'd see an immediate change.

I hurt all the time. All. The. Time. I don't have good days. Vicodin is the only med that makes a dent in my pain, and I hate relying on it. The pain in my lower spine is a really deep, strong ache (not muscular). It kind of feels like someone sawed away at my spine, and the ache is what came after. I can't sit for a long time, and sleep makes it worse. Hot baths help, but only for the evening. I feel like I need to stretch frequently, but I'm limited, and I hurt too much to exercise. I'm also exhausted most of the time.

My condition is changing and getting worse fast. It used to just be in a general area, but it's climbing up and also spreading out toward my hips. A few times I've woken up and my butt has even hurt! Enbrel is my last hope before I get referred to a different kind of specialist. I know it's the big treatment for this.

Anyway, I'm sorry for rambling, but I haven't talked to anyone yet who can relate, and I'm overwhelmed. Every aspect of my life has been affected by this. If anyone has any tips, experience with Enbrel, etc., I'd appreciate hearing them.


27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)