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Joined: Nov 2012
Posts: 97
Apprentice_AS_Kicker
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OP
Apprentice_AS_Kicker
Joined: Nov 2012
Posts: 97 |
Your symptoms sound the same as mine. Hi Smed, which symptoms are you referring to? Was it very hard to sit? Were you relatively comfortable sleeping/laying down?
Diagnosed at July 2012 after 8 months of pain. HLA-B27 negative.
NSAIDS don't really work. I can't use Anti-TNF because i had tuberculosis years ago.
Wish you all best health, M. Sami Kuzey
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hi Wilhem,
My spine is basically collapsing. I have developed 2 curvatures and in between I have 8 bulging discs. I have a lot of stenosis. My back is in pain and stiff from the top of my neck to the bottom of my tail bone. I could make it sound worse but that is basically what it is.(what it was in the last MRI about 1 1/2 years ago). I have for many years done deep breathing exercises to try to keep my chest opened up. I do exercises as I can and try to keep moving. I am at a point to where I know if I quit, I will be quit! I wear a brace just not all of the time. I get rhizotomies to help with the pain. I weaned myself off of the pain pills because I don't like what they do to me. I am just not myself when I take them. I do use Lidocaine patches and I take Skelaxin when I really need it.
I probably told you much more than you wanted to know. :o)
Possi
![[Linked Image]](https://www.kickas.org/images/flowers/Smilingsun.gif) Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Try putting a thin pillow under your belly when you lay on your stomach. It relieves the pressure on your back. I cannot sleep on my stomach but in Physical Therapy they always put a pillow under my stomach and under my ankles. The spine dr. does also for the treatments.
Possi
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Oct 2012
Posts: 101
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Oct 2012
Posts: 101 |
MRI will show herniations. I still have to be careful to not overdo it or sit too long, but surgery was definitely successful! It's hard to say -some people do better with rest than others.
Good luck with it all-hope you can get it figured out!
Jamie, 40 AS / psoriasis Enbrel weekly injection Tramadol, Flexeril and Hydrocodone as needed 
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Joined: Mar 2011
Posts: 273
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Mar 2011
Posts: 273 |
I spoke to my Chiro. he is going to email me some websites of CHiros in TURKEY who went to Chiro college in United states - one that trains in subluxation chiropractic, as opposed to "treat your pain" chiropractic. Check out LifeBy Design in the mean time at my chiro's site http://www.cafeoflifelondon.com/also http://www.am980.ca/HostShows/LifeByDesign.aspx
Last edited by NewNormalCharity; 12/13/12 12:23 AM.
Diagnosed Fibromyalgia 2004
Diagnosed Ankylosing Spodylitis Sept 2011.
Vertigo Since October 21 2012
Humira June 2012
Spending Each day using it to the full to help people in my community have hope, the only hope that keeps me going despite pain and fatigue every day most of the day.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Why i have doubts
-----------------
1. Everyone characterize their AS with discomfort in sleeping. But i always had complaints about sitting since the beginning.
Same here. Sitting was HELLL, usually sleeping wasn't nearly so bad. Sitting is a bit better now, but only if I sit on a very flat seat, otherwise it affects my neck. There are times when my SI joint is bad that sitting is by far the worst thing I can possibly do. How does sitting hurt, where does it hurt?
I cant say im very comfortable while sleeping. But compared to sitting, laying is heaven for me. I have no story of: rolling one side to another is impossible, getting out of bed took me long, i was locked when i got up etc. But most of the times i cant sit more than 10 mins.
If I'm in bed for too long, my ribs and back are a bit sore, but nothing a hot shower can't fix. I do have to lay on my back or my neck and SI will be bothered. But on my back, with a thin feather pillow, with a muscle relaxant, hot bath, and not too many hours, and I can sleep in the bed. But do even better in the recliner. Unless my SI is really bad, then I might have no choice but to lay in bed.
There were many times i got up very bad and as day passed i felt better. But days i got up good and got worse as day passed was not less.
a little sore upon waking. better as the day progressed initially. but by the end of the day, i'm usually beat, sore, worse.
2. Pain is more significant than stifness. When doctors ask me about stiffness, i can never be sure of what they are asking.
Okay, my pain increases when i bend forward and i hate wearing socks. but is this stiffness? I dont get locked or cant move or anything. Just aches more while bending forward.
Pain here. Stiffness? well in the morning the ribs are a bit sore and the back too. and the toes and fingers a little, but once i wiggle them they are fine. yes, stiffness not really a part of my problem either. I can almost touch my toes, as much as i ever could my entire life, before developing this. Pain yes, but so little stiffness that that was one reason it took 12 years for a dx.
3. Most people, at the beginning of their disease, seem to have lower pain levels in typical days, such that they cant even sometimes understand they have a real problem. On the contrary, although this is my first year, since my 4. month, i had to quit almost all my life due to significant pain while sitting.
One day I was fine. The next day I did something terrible to a rib. Then fine for a few months, then horrible wrist tendonitis and really messed up my neck / upper back. That I dealt with for two years, then the SI joint flared, and it was the worst it ever was on that first day. My back went into spasms so bad i could only walk with a walker and even then it was next to impossible. It came and went; I flare every few months.
4. Significant portion of patients say that, they had some kind of mild indications of this disease long time before it all came hard(eye or bowel or mild back pain or something). I never ever had any kind of symptoms related to this disease before it all started.
Again, mine started with a bang. Gastritis so bad the docs and I thought it must be an ulcer. Went from fine to horrible within a few days. 5 years later the arthritis started the same way.
5. No other part of my body is effected. Only lower back.
Once my right knee went bad, but then got better in a few months. And there were no swelling. It seemed like mechanic problem.
(Recently my feet ankles sometimes give me discomfort before i sleep. not a big pain though)
Initially for me it was just the wrists and neck/upperback. Then just that and the SI (lower back). That was within the first 2 years. Then slowly different body parts kicked in. For you it may turn out to be the same; or not.
6. NSAIDS dont give me a real relief. Say i have a 7/10 pain, it would go 5-6/10 at best.
I've tried around 10 different nsaids and cox2 inhibitors. only aleve does much for me that is noticeable. but that gives me side effects. Maybe there is one that would work for you? the real test i think is prednisone. you can do a 6 day methylprednisone taper; its relatively safe to do for that short a time. Its my happy miracle drug.
7. I can walk easily. No locking. (But my lower back pain increases as i walk longer that 15 mins. Still no locking)
when my SI joint is bad, standing and walking are painful.
8. No exercise decreases my pain.
that's true for me when my SI joint is flared.
9. Hla27 negative and my blood values are never out of normal range! Ok, this can happen, but with everything else, it gives me more doubts.
i'm HLAB27 negative. and my CRP and SED rates are always between 5-10 borderline high but within "normal" range. But then again i flare and then have lower levels of inflammation in between and have never had the tests during the worst of my flares. but too the spondys often don't show much inflammation in the blood work. I have undiff spondy, or so they say, because not only do i have the spinal / SI inflammation but also other joints and my enthesitis is very pronounced and i have some GI inflammation and some low level psoriasis when i flare.
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Mar 2011
Posts: 273
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Mar 2011
Posts: 273 |
This is the email from my chiropractor. I don't know anyone - but he claims to be subluxation based and did go to a subluxation based school. http://www.spineuniverse.com/specialist/chiropractor/tr/izm/mustafa-agaoglu-8472http://www.spineuniverse.com/specialist/chiropractor/tr/ist/raul-margarida-7036-- Dr. Jamie Richards CEO | Life By Design Inc. Join the drive to "ONE MILLION Families Worldwide Living Life By Design" Listen to Life By Design Radio Sundays at 5 on AM980 or streaming live on www.am980.ca and subscribe to the podcast on iTunes. Follow me on Facebook Follow us on Facebook Follow me on Twitter Watch us on YouTube Register for the next Chatham-Kent Total Health Makeover Check out our Websites: Cafe of Life Chiropractic Studio/Richards Family Chiropractic Life By Design Strength & Conditioning Find a Life By Design Certified Office HERE 394 Oxford St E London, ON N6A1V7 T: 519.439.5353 T: 1.866.570.1117
Diagnosed Fibromyalgia 2004
Diagnosed Ankylosing Spodylitis Sept 2011.
Vertigo Since October 21 2012
Humira June 2012
Spending Each day using it to the full to help people in my community have hope, the only hope that keeps me going despite pain and fatigue every day most of the day.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Yes, its a year later since you posted this and I responded, but since you've been posting more lately, not in the NSD section, and I noticed your problems with sitting, looked to see the posts you had started and found this.
I'd like to add a thing or two:
1. I didn't think I had symptoms before it started quickly, but now, looking back, the constipation I had as a young young child (before I started school) that seemed to resolve for the next 20-25 years, except for occasionally when I'd go on vacation….that is probably related. Probably started with bad microbes in my gut when I was born.
But a lot of people with spondyloarthopathy may have inflammation in their ileum but be asymptomatic as far as the bowel is concerned. A colonoscopy could find the inflammation even if no symptoms (so said a rheumatology textbook.
2. To reiterate: I started with the arthritis with must my wrist and neck. And they started really really badly. Was worried that either would disable me. The neck made sitting impossible. Then 1.5? 2.5? years later, the SI joints started off the same way. One day they felt fine, the next day they crippled me…literally….I was using a walker to get around…that was after a day of muscle spasms that made it so I couldn't walk. Only years later did the other body parts start in.
3. I am now on Humira (started in June) and though I still have some harder days…..like today, my SI joint and neck were sore, but nothing like before Humira……Humira wouldn't work if it were "mechanical".
But of course the only way to get on a biologic is to find a doctor who can see that we have a spondyloarthropathy despite being as we describe rather than the textbook symptoms.
4. It took me 12 years, 5 rheumatologists, lots of money to finally get a diagnosis. And that was after almost becoming disabled. I was so close to having to go on short term / long term disability for my job. So close. I didn't even realize how close til I took a look back at that time. But if I had gone to more doctors quicker in succession, maybe it wouldn't have taken so long.
It really had nothing to do with me, how I changed…..instead it had to do with the doctors, finding one that understood and looked deeper.
5. I do take lots of supplements, LDN, watch my diet (for me that's (cow) dairy free), go to a chiropractor twice a week for some easy gentle mostly muscle work, in addition to the Humira. I still take prednisone for flares, but not nearly so often. Since being on the Humira in June, only took pred in August. That's just one 10 day course of pred in 6 months. Before Humira, it was every 10-12 weeks.
6. It may be AS. It may be undifferentiated spondyloarthropathy. It may be simply "spondyloarthropathy". My rheumy doesn't worry about semantics, he's treating me and just calling it "spondyloarthropathy". Why pigeon hole it when the same drugs generally work for the different spondyloarthropathies.
If I were HLAB27 positive, they might say AS.
If I had evidence of fusing, they might say AS.
If I had elevated CRP or Sed Rate, they might say AS.
I have lots of signs and symptoms of inflammation and "autoimmune" response. Just not the three I just listed.
Now that I know, I realize I had subtle symptoms that I didn't even realize were related. Like the dry eyes. Like the inflamed tongue bumps. Like the "dry skin" patches that I didn't realize was psoriasis because they weren't terrible.
OK, later…..
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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