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#520358 - 01/01/21 04:53 AM Hello!
Styreneoxide Offline

Registered: 12/28/20
Posts: 1
Loc: Kazakhstan
Hello! Everyone! I am new to this group. I want to say thank you for accepting my request. I have been visiting this page for a little over a month and decided to join. I will be trying the no starch diet soon to see if it improves my condition. I would love to hear everyone’s story.

Here is a “short” version of my story:
In November 2015 I got sick with some horrible respiratory disease. It led to an ear infection and the ear infection caused a mastoid infection. I was hospitalized in December for over a week. I took many iv and injection antibiotics and steroids. January 2016 my stomach got weird. A couple weeks later I woke up with ankle pain. I had a toddler and it was snowy. I thought I hurt myself somehow the day before. I carried on with my normal day, but while cooking dinner I couldn’t walk. By 3 am I was shaking, gagging, and unable to sleep. I went to the emergency room because I thought maybe I had broke it somehow. That’s the only pain I could compare it to. The ER sent me home and told me to take ibuprofen. The next day I went to my clinic and eventually after blood tests they decided I probably had reactive arthritis. They prescribed Celebrex and tramadol and had me give blood often. They saw my kidneys had problems so I was sent to Dubai to rule out vasculitis and a could others. As soon as I went they started me on steroids. I think prednisolone. I was on that for awhile. It helped so much. I was told I was hlab27 positive and everything else was normal, but to expect pain for awhile.

I improved and got pregnant with my son in late 2016. While I was pregnant I felt normal, but right after the birth (June 2017) my stomach started acting up again. On and off my stomach felt bad. Then my pinky started hurting in October 2017. All my blood tests were normal. Then in Spring 2018 my ankle and foot started bothering me. My doctor thought I was being anxious because my blood was normal, but ultrasound showed some tendon inflammation in my ankle and foot. I went to a rheumatologist in August 2018 and I complained about my foot, pinky, and a spot in my back that felt like a bruise if It touches anything. I got an MRI and it showed sacroiliitis. I was diagnosed with chronic reactive arthritis or undifferentiated spondyloarthritis depending on the doctor. I was on sulfasalazine for months with no improvement. I haven’t been to the doctor in a while, but I have more pain in new locations and notice more hip pain. I found this site because I noticed beans and lentils destroy my stomach and it started with the other symptoms.

I am relatively new to all of this and I’m pretty mild compared to many people, but part of me is concerned that I’m in the early stages and in 10 years I’ll start getting damage.

I hope to hear other stories of how things started and the methods that help.
Reactive arthritis

#520359 - 01/01/21 10:40 AM Re: Hello! [Re: Styreneoxide]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6132
Loc: Reno or SFLU Philippines
WELCOME, Styreneoxide:

You are already very smart about this disease: "... I’m pretty mild compared to many people, but part of me is concerned that I’m in the early stages and in 10 years I’ll start getting damage."

In most cases, during pregnancy, AS activity decreases because the immune system down modulates so the baby is not rejected. Also, inflammation changes with more distinct hormone changes, perhaps increasing at characteristic times of the month.

The combination of diet plus an effective DMARD can considerably reduce AS activity and strict enough diet (alone) can halt progression of this disease; rather, strictest diet has achieved this level of remission in certain individuals.

Sulfasalazine that is enteric-coated (Azulfidine-EN or -EC) is the best way to take this and in combination with diet it was the DMARD of choice in Professor Ebringer's London AS Middlesex Clinic.

Will see You in the NSD Forum and the experts there are always willing to help. Also, there is a Facebook group supporting this very effective treatment.

Happy New Year and much improved HEALTH,

Important AS Resources

Professor Ebringer: On Diet and AS;

RED ARROW --> Philippines

#520370 - 01/09/21 01:23 AM Re: Hello! [Re: Styreneoxide]
Inanna Offline

Registered: 11/15/01
Posts: 18084
Loc: UK

I am so sorry you have this diagnosis, but very glad you are starting to find your way through. You've had such a difficult road, but you aren't alone with it anymore.

Have you been given stretches and range of motion exercises to do? Things like yoga and mat work in pilates can be very helpful. it is so important for us to keep moving through exercise as best we can, depending on our flare and pain levels.

Your reaction to beans and lentils tells me that you may benefit from no/low/restricted starch. You've isolated the pulses as a trigger, what about wheat or millet, rice or other grains? For me it was wheat, specifically, that I needed to cut out.

Everyone's disease progression is different, so it's hard to do a comparison, but your comment about being ready for what's coming in ten years is astute. I lived with back pain, specifically neck and sacroiliac, and went to the chiropractor for 25 years before my left SI decided to start fusing and I was diagnosed.

In the 20 years since diagnosis, my left SI has fused, my right has begun to and I have two thoracic (mid spine) vertebrae that 20 years ago were 'squaring off' (pre-fusing) and are now trying to fuse. My neck is the worst on an ongoing basis, but it turns out my neck is osteo-arthritis, not AS, which explains why biologics never helped it. But at my age, having lived with this since I was about 14, with the help of good treatment and lifestyle changes, that is the damage I have.

Your gut reaction ... has anyone looked at you for Inflammatory Bowel Disease? I've showed signs on and off since I as a child, but this past June at the age of 57 I was finally diagnosed with Crohn's Disease.

AS and Crohn's/IBD are related and treated with the same meds. Now that I'm back on a biologic med that treats both, I am starting to feel much better. It might be worth looking into. A capsule endoscopy is the least invasive way to find out, if you can get one. A camera pill that you swallow, that transmits pictures to a little device you wear for the day. You give the device to the nurse at the end of the day, your body passes the pill naturally and you get answers.

But mostly, I'm glad you aren't alone with this, anymore. You have found a great resource and some fine people.

Warm hugs,

A life lived in fear is a life half lived.
"Strictly Ballroom"


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