Hello everyone! I couldn't find a place for introductions so hopefully this is ok.

My name is Nina & I'm a 28 y/o Stay at home mom of 2. I've had back pain since around 7th grade but my SI pain began 5 years ago while we were living on post w/ the Army in Germany. At that time the doctors were NO help. I only began getting answers last fall when my family doctor found I had a positive ANA and sent me to a Rehumotologist. She found that I also have a positive HLA-B27. She and my PTist (who is also a doctor) all believe that I probably have AS but she said it could take years for an official diagnosis becuase she needs to see changes on the MRI first.

I also have a disc buldge in my S1, L5 with currently no erosion. My pain is the worst in my tail bone/SI area but radiates up my back and when the muscles get tight, it's cold or raining I get nerve pain down my leg. My PTist has noticed my iliac bones (on both sides but at different times) will have little to no movement. Stretches do help with that but hurts in my entire pelvic area until it gets better. I wear a SI belt at all times and if I take it off my pain increases within half an hour. Day-to-day living is pretty rough at times. Most days I can't stand or sit for long. But I do seem to be better during the warmer months.

I generally refuse medicine other than Ibuprofen but that hasn't been helping as much lately. Naproxen hurts my stomach so I switched to a natural anti-inflamatory Turmeric & Bromaline. It's been OK, not great but Ok. My Rehumatologist had me try a methadose pack & when I told her it seemed to help she suggested I try Sulfasalazine. So I'm giving up my anti-medication mind set and giving it a try. I'm slowly working the dose up & so far I haven't had an adverse reactions. It haven't noticed any change in my pain yet but I'm not at full dose & she said it could take 1-3 months before I notice any improvement.

So that's where I am now. Does this sounds like any of you who had their pain start in the SI joints? I'm excited to have imput from other people going through the same thing! I have def felt very alone in dealing with this! My husband is wonderful help & very understanding but it's not the same as someone actually experiencing the same things as you! Especially since I worry so much about my spine fusing & how that will effect my quality of life. Plus my Dad died a year ago, at only 54 years old & he never found out what all of his problems were. but he def had something going on with his back & a lot of pain in his feet so it's possible he had AS, as well. I look forward to "meeting" you all! Have a great day!

Hi...I just got finished posting my "new here" testimony too. Yes it IS WONDERFUL to have people that "get it".

Hats off to you for going so long virtually med free! Nothing I take is strong, and I'm good for only about an hour a day...and it's a QUICK hour!

I've had people at work give me grief for moving my car closer to the front door throughout the day...treat me as though I'm just lazy if I can't "go/do" stuff...because they can't see it, they don't get it! I try my best NOT to walk hunched over, or with a limp...though recently, it's become impossible. My rhuematologist authorized a handicap placard & a coworker had the audacity to ask where I got that & that she needed one for the mall. Let's just say: she better be glad I can't move fast.

Anyhoo...all my best on your new meds & looking forward to more learning!
Leslie

Hey there and welcome to Kickas,

Glad you found us and hope your AS gets under control more. We all tend to have ups and downs.

Rather than sulfasalazine try azulfadine, it is same medicine but enteric coated so works better and easier on stomach.

Azlufadine was a great med for me. With either med you should have blood work done every 3 months as can be hard on liver.

Best to you,

Tim

Hi Nina!
So nice to meet you. Glad you found your way here. Sorry you've been having pain. And I'm so, so sorry about the loss of your dad. So young. My mom just died. She was only 64. I'm really grieving the loss of her.
I hope you feel welcome here and comfortable. You can get support and find other, as you wrote, who know what it is like.
I don't have full blown AS as there is nothing showing up on an x ray, but I've got a dx of axial spondy. Carol Sinclair's book The Low Starch Diet helped me. She had horrible IBS that she found out was connected to spondyloarthritis and she found that certain foods made her feel worse so she wrote a book about it.
Well I'm kind of rambling but just wanted to say hello and welcome!

Thank you both!

Leslie, before I began physical therapy I had hunched over days. I think that's what scares me the most. I'm only 28! How will I be in 10 or more years from now? The thought of me in a wheel chair, feeling like i stole my husband's life from him... ugh. I know I beat myself up over it all too much but then in another breath, like you're talking about with your co-workers, I feel like I'm disregarded (especially by extended family) because the disease is invisible. They're starting to come around now that we found about about AS but they still tend to "forget" and put pressure on me to do things I'm not capable of. Today, for example, my mom & sister wanted me to go with them to the city for mother's day. Throughout the week they were only telling me bits & pieces of the day, when I finally realized everything they had planned they were talking 3+ hours of driving and several hours of sit, stand, sit, siiiiit, staaaand. I can't stand and do the dishes for 20 minutes but they think they can run me around outside from noon til 9pm. Then they get short with me when I let them know I can't. Just a constant battle of telling myself I'm going to be ok and telling everyone else to leave me alone because I'm NOT ok. Meh. One thing I am sure of, it could be worse & I need to enjoy the time I have NOW. I try & I'll always keep trying!

Tim, thank you for that! I will bring up that medicine when I see Rhemotologist next. & yes, I am having my first round of blood work done after I finish the first 6 weeks of the medicine. I don't remember how often she said we monitor after that but 3 months sounds right.

I def feel more under control than before I started physical therapy! (I've been going twice a week since October) but I really wonder if I would best benefit from moving to a warmer climate. If only we could sell the house. Maybe one day Oh & a couple things I forgot to mention, I also have cut down on red meat since I know it can be inflammatory but I don't plan on cutting it out completely. I tried to cut out carbs completely a few months ago... that's no way to live lol! I was miserable. Oh & I recently started taking fish oil too. & just this winter I developed arthritis in my hands & feet. That's why she originally had me try the methrodol pack.

Ok, I think I said it all now. Sorry to keep rambling, trying to get it all out at once LOL

Thanks Jan! & I'm sorry to hear about your mother, as well! I know u said the Xray doesn't show anything. Have you had MRI's done? My Xray showed some mild sclerosis on my left ilium with no erosion. & the MRI only showed the disc bulge. Dr seems to think it strange that inflammation didn't show on the MRI but I wasn't in any pain the day we did it. She said that doesn't matter but I don't see how it WOULDN'T matter. If I'm not inflamed, you won't see inflammation... that would seem to make sense to me! lol When does an offical diagnosis come? Not until the spine begins to fuse?? All my dr says is "something will eventually change and that will tell us more".

Hi Nina,

I'm one of the young'ns here as well. Welcome to the site and hope you stick around. It's a great place to give and receive support. Glad your husband is supportive... it's a start to managing the A.S. monster. Have a good weekend.

I found physical therapy to be very helpful with a great therapist, until recently when she had to retire due to a serious illness in her family. With the help of a good therapist, you shouldn't have to worry about developing a hunch, even if you can't avoid fusing (which you may not even get at all, there are plenty of people with spondylitis who get little or NO fusing).

Some people gush about the wonderful results of a very low carb diet, but even more people here focus on _types_ of carbs and still get very good results. I am very frustrated at being on any sort of restricted diet at all, but keeping a strict diet does so much good that I am not masochistic enough to intentionally cheat on it. Iritis attacks (where the inflammation gets into your eye and can cause permanent vision damage) have been a powerful motivator to be strict!

I can keep my inflammation down by limiting my carbs to simple sugars, so there is no carb-withdrawal with lethargy or depression (like some people complain about on a carb-restricted diet). Have you ever heard of the SCD "Specific Carb Diet"? Another good thing to look into, aside from the Low-starch book that Naj already mentioned.

Aside from complex carbs (starch, lactose), eating foods that you're "allergic" to also promotes gut inflammation, which makes the arthritis worse. I put that in quotes because I'm really referring to food intolerances, which are a different type of allergy than the kind most people think of -- instead of an immediate hives-and-trouble-breathing acute reaction, it's a more subtle reaction that keeps your gut inflammed[1]. There may not even be obvious digestive symptoms. If you have any strong food intolerances, avoiding those foods can have a big improvement in your health. It's good to know even about mild food intolerances -- I'm mildly allergic to egg whites, which means I don't notice anything when eating a small amount (e.g. baked into a low-starch almond cookie) but eating multiple boiled eggs a day for days in a row made me feel *bad*.


A quick way to tell whether the food you're eating currently contributes to your pain/stiffness is to do a brief fast. For me, one whole day of water-fast was enough to tell the difference. The next morning was an unusually good one. Some people have blood sugar issues and can't handle even one day of fasting, in which case it often takes a month or two of diet experiments to be able to tell for sure.

[1] http://ibstreatmentcenter.com/ibs/food-allergies-a-cause-of-ibs/more-about-food-allergies (explanation of IgE vs IgG and IgA reactions)

hi, nice to meet you!

for me, started in my ribs, upper back, and wrists in 1998, then hit my SI joint hard in 2000. for awhile it was just that, but then the feet, other tendons and ligaments over the years.

a good doctor and good treatment can make all the difference. for me, i had to suffer through flares and some pretty awful years for about a dozen years, but so glad that is behind me, at the moment.

sorry you have coworkers giving you a hard time about the handicap tag. use it without guilt. all those years i dealt with this, not knowing i could have one, always thinking it was for people who were in wheel chairs. but being here, i've learned a lot. though my doctor didn't suggest it, soon as i suggested it, he filled out the paperwork for a permanent one. truthfully i use it almost exclusively for work, because i have to be there, on bad days as well as good. been reading a lot about "invisible illness" / "invisible disability". never really thought of myself that way before, but i guess that's us. i figure anything that helps me be more functional, enables me to serve others better.