Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First appointment with a Rheumatologist

Hi everyone,

My name is Scott Havill, 36 yrs old, just diagnosed with sacroiliitis. I live in Eugene, Oregon.

I will be seeing a Rheumatologist for the first time on Wednesday, the 26th. I was recently diagnosed with sacroiliitis (July 2015) through a hip MRI. I have all of the symptoms that lead me to believe that I has AS; currently with hip, spine, and rib pain. My pain history was mostly associated with hip(glutes/hip bursitis) and low back soreness for the past 10 years. I recently took a leave of absence from work(May 2015) due to the complete loss of mobility associated with my hip pain and the flare ups happening only weeks apart, as historically, there were long stretches between pain cycles or low level pain which did not inhibit my daily activities that much.

For the past year or so, most of the pain was associated with my hip and glutes. Early June (2015), I was in a car accident. A month after the car accident my spine is very inflamed and my low back and ribs have been bothering me. At the beginning of my leave of absence, I had a MRI of my low back because the orthopedic surgeon thought that my back might be referring the pain to my hip. The back MRI in May (2015) came back completely normal with only a little arthritis. The back MRI was before the accident, which as I stated, I have not been experiencing inflammation along my spine, which hurts to the touch and is directly in line with my rib pain.

I would like to ask the community for advice on what I should pay attention to or ask the doctor during my Rheumatologist appointment.

My digestive history, was that I contracted a stomach issue during my Guatemala trip during my early 20s. Because of that, I had digestive issues for much of the time since that episode, Though I have had great digestion over the past 2 years. Before the Sacroiliitis diagnosis, I ate no gluten and very little refined carbs. I did eat rice and corn tortillas, but most of my starches came from fava beans or garbanzo beans. Food combining has always been a problem, so I had strict standards on when I ate certain foods. I am currently on the No starch diet, which I began this Tuesday (8/18/15).

I just found a naturopath (Dr. Lindsey Jones-Born) in the Alameda, CA, that has AS. I have a consultation with her next week. Any other naturopath recommendations would be appreciated, as I feel that I will need to meet with alot of different people before I find the right person or group of people work with.

I realize that I am moving faster than I should, as I have not received a AS diagnosis, but I feel that it is important to begin this process and if i end up with something else, I can laugh this off(I am praying that this is the case).

Any advice or help from the community would be much appreciated

thanks,

Scott

Hi Scott,

I live outside of Willamina, Oregon, nestled in the Coast Range east of Lincoln City. Hello from a NW neighbor!

I struck out with both rheumies I saw, no advice there. I have had such great results with the no starch diet I had no desire to try biologics. Neither rheumy wanted me as a paitent when I refused biologics. A significant part of my spine is fused, SI joints fused, rib cage too, khyphosis, scoliosis, it all came on pretty quick in my late 20s. I am now 36 and went undiagnosed for over 10 years. Hence I am doing the best with what I got.

Food combining, check. Was just explaining the importance of this to someone this morning as I had wretched gut issues before eating low/no starch paleo and discovering food combining. All gut issues are gone with my current diet, ya!

I chiming in because one of my biggest regrets in life is that I did not discover Rolfing therapy sooner. If you are in the earlier stages of this disease messing with your alignment, posture, joints, etc. A good rolfer can really help save your posture. If so were to go back in time and write myself a note in my mid 20's when I had bad sciatica and low back pain and often walked with a limp I would have told myself to get Rolfed!! I am now stuck with a fused hunched forward spine from sitting at a desk for too many years and seeing all the wrong doctors, chiros, and physical therapists, acupuncturist, naturopaths, etc.

My current favorite therapy other than the diet is Rolfing. And my most favorite Rolfer lives in Corvallis! Jan Schroeder is amazing. Its like the best form of torture. She goes in deep with a plan at helping realign your body by working your fascia and muscle tissue. I have seen 3 other Rolfers and Jan is the best of the best!!

http://www.corvallisrolf.com/about-jan.html

I go every 3 to 4 weeks. She has done soooooo much for my body even with the bad shape it is in.

Because of the being on the no starch diet so long I no longer "flare" horribly like I used to and the intense rolfing treatments work with my body instead of against it. I will offer caution to those in an extremely bad flare to maybe wait until you find treatments (diet, etc) to help fight the "out of control inflammation" before getting rolfed as it is very physical. That said, when I do show up to an appointment with pain, she totally helps work it out of my body. And oh my do I float out of her office after each visit, after years of tension get released from points all over my body. She also helped get my body out of fight or flight mode after years of enduring pain I would flinch when touched, but after a year seeing Jan my body is so much more at ease and able to be in a resting state. And she has seriously been helping me fight the progression of my hunch back. So thankful I found her.

Wish you all the best on this journey!
Andrea

The part in your story about Guatemala caught my eye...!

I traveled in Guatemala back in 2000, caught a stomach bug, was very sick for a few days. After that my stomach became much more sensitive, could not eat onions of any kind, peppers, spicy food.

4 years later I turned thirty, and noticeable fatigue and IBS set in. By the age of 35/36 my SI join flared up, and 6 months later, pretty much every joint and my whole spine flared permanently.

Just like Andrea above I now, 4 years later, manage quite well with a No starch diet.

I can't produce the same kind of output as before the systemic inflammation manifested, but am able to exercise multiple times a week, typically mountain biking, but yesterday I even managed 2 hours in a kayak in strong head wind. Nackered today (as in: rest all day), but my neck and shoulders held up suprisingly well, a huge improvement even from last year.

The diet path has been an amazing journey, slow going for me, but the results/improvements from year to year are amazing. It's frustratingly slow progress, yet noticeable. I think the most irksome part is that you start to feel better, than expect to (or want to) do more than you "should". You start to feel more normal, and expecting your body to act more like that of a "normal" person

Sounds like you have done your fair share of research already, while looking into various types of professional help. I think that is smart, and not at all moving faster than you should.

I have no diagnosis, have had no professional help or "insight" into my disorder. The fact that I got back to working fulltime within 6 months of being at my worst is all thanks to this site and other online resources. I've found a solid way of managing, and slowly (and greatly!) improving my symptoms.

I say stick with the NS diet, give it a good 6 months of strict dedication. In my opinion it is super well worth it. It took me about three months so see noticeable results. There have been a lot if ups and downs since then, all attributed to my own "doings," overdoing activity, work stress, and eating food that trigger my symptoms.


/kristine

Thank you both for your encouraging responses. I certainly hope the no starch diet will work for me, as it appears to only work for a portion of the AS population. At this point, I have been starch free since last Tuesday (during this time I have fasted for 2 days). I have been eating only: eggs, chicken, salmon, broccoli, and kale. I have only used herbs for seasoning, except for one meal where I used coconut aminos. Shortly after that meal, I was not able to walk and had extreme hip pain on both sides. I did a little research on coconut aminos and it has FOS, which have been shown to increase Klebsiella populations. This is just one test, but it appears that foods with FOS might trigger a symptom response in my body.
I really hope that the diet works for me, as I do not want to rely solely on medication. I am keeping my fingers crossed.

r.e. rolfer - Thank you for the rolfing reference. I have a rolfing practitioner I work with in town named Karen Lackritz. She is amazing, but I have not seen her since the diagnosis in the past month. I mentioned to her the I may have AS, but she was not familiar with it.

Thanks again,

Scott