Hello,

About 10 years ago I found this wonderful little corner of the internet. At that point it had been over 3 years since I could sleep in a bed all night due to middle back pain. I had been told 3 times that I had AS and told more than 3 times that I didn't. I quit caring what it was called. I just wanted sleep.

I tried the NSD without stellar results. It was so totally foreign to me that I just couldn't sustain compliance past about 4 months. It did help a little, but not enough for me to lay in a bed and sleep.

I wandered through life in a sleep deprived state, trying anything and everything I came across for relief. Help came about in a truly odd way that I cannot wish on anyone.

In January 2010 I was diagnosed with melanoma on the bottom of my foot. Through the course of treatment it was discovered that it had spread to a lymph node in my left groin. During the surgery to remove my other lymph nodes in that area, they cranked my leg around into a position that it had not been able to achieve for several years.

Even after the wound on the bottom of my foot healed, I could not stand or walk for more than a few minutes at a time. Sitting was not much better, and as mentioned above laying down had not been a good experience for many years. Life was agony. I was beginning to think about giving up. I really had no quality of life, and I was not the least bit productive. Existing to watch TV just wasn't doing it for me.

I had told every doctor and medical professional I came in contact with about this, but no one offered any encouragement or help. My rheumatologist is a wonderful doctor and has been brutally honest in the past, so when I saw her in August 2011, I asked her if this was as good as it was going to get. She told me that there were still options to try and gave me a referral to a physiatrist.

The physiatrist diagnosed me with SI joint dysfunction. To this day, I'm not real clear on whether this is part of the AS or not. We discussed the origins of it, and a car accident I was in over 30 years ago is likely when things were knocked out of alignment and over the years worsened. The last surgery was the proverbial straw that broke the camel's back.

I did 6 months of physical therapy in different forms just to get me to the starting point of being able to exercise and get stronger. I can lay down in a bed and sleep for a couple hours at a time now and am hopeful that that will continue to improve.

For awhile I thought maybe I really never had AS, but when they would measure my ability to rotate it is far from the normal range and back extension is limited as well. They thought it would improve, but it hasn't.

For many years I have had some low-level issues with my digestive tract (I'm trying to be tactful here), but never really did much about it. The NSD has always been in the back of my mind, and I have given it a feeble attempt a time or two.

What brings me back now is that I had a PET scan for the cancer last week that showed "inflammation in the intestines. Rule out ulcerative colitis." I guess if it's bad enough to show up on a scan, I should pay attention. Maybe between having my back lined up properly and working correctly and the NSD, I can attain a better level of living.

The moral of the story is keep telling your story until you find someone who can and will help!

Valentine

Wow that is one tough road traveled. Welcome back. Like you said, keep fighting for answers and ideas.

Glad you have come back to tell your story of what has been going on the last few years. Its obviously been a hard road, but in some ways that is comforting for me - just knowing that keeping on telling your story does finally work, and its the slow small changes that add up to much bigger ones.

Hope you stick around a bit this time, but if not, stop in here again some time in the future and give another update.

for years "they" kept trying to convince me that i had "SI joint disfunction", but to me, that's not really a dx, more like a "symptom". yeh, i know its disfunctional, but why?, that would be a dx.

now i'm on the other side of the line. have doctors treating it as the inflammatory thing that it is.

ways i've been able to determine its from inflammatory arthritis:

1. it flares and gets a bit better then flares again, etc

2. aleve does help it some (though can't take it due to the side effects)

3. steroids help it 100%! i've done the medrol dose pack a few times now, and every time, my SI joint clears up nicely

4. a flector patch over it does wonders (when its at its lower chronic level of inflammation; for flares i need the steroids)

5. exercise helps it. sitting or laying too long makes it much worse.

6. no "excuse" they can pin the disfunction on. probably true for you as well, is my guess.

sorry you've been through so much. glad you're starting to get answers.

hope its IBS and not IBD. but if its IBD, at least now there are better drugs and treatments then when my stepfather developed crohn's back in the 80s.

hope you get some relief soon!

Hello Valentine,

Welcome back and thank you for telling your story. We all find our way here one way or another. Some are lucky to find us right off of the bat. We all have a road less traveled and each story is meaningful. We all empathize with our fellow sufferers and feel their painful lot in life.

I hope you stay with us. Just talking to others is some form of relief. This board has saved my life more then once. You are so right, keep telling your story until someone helps.

Hello Valentine,

Good to see you checking in. A lot of people tell there stories here and find help, so good to see you back again.

Hope things can improve for you, quite the story you have.

Take care,

Tim

Oh my dear one, I'm so glad you found your way home here. Telling us your struggle has to be tough but I hope you find comfort once again with your kickas family. Surviving melanoma is truely a victory. Melanoma runs rampid in my family and luckily so far it hasn't raised it's ugly head yet with me though every 3 months I visit my dermatologist and have multiple basal and squamscells removed and she is keeping a close eye out for the melanoma to appear.

Cindy