Anyone here with AS?

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PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/10/2007 5:21 PM (GMT -7)   
Wondering if anyone here has AS. I am having serious pain all over, butt included! My pain started long before I ever knew of crohns and has been getting worse each and every year. It's gotten to the point where I can't sleep at night.
 
If you have AS, could you please be so kind and tell me how it started? What joints, before after crohns diagnose and so on...
 
Thanks..
 
Pia
Chrons - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
PCOS - July 07


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 11/10/2007 6:40 PM (GMT -7)   
I have it was told I did in 1996. I started with pain in my groin area then into my hips then went to my lower back and started working its way up my spine till now my entire spine is fused I can not move my head not one hair ZERO frozen a little forward .Back of my head is about 8-9 inches from a wall.I had both hips replaced in 1999. Got told I had crohns in 1999 too it was not a good year for me.

Go to
www.kickas.org

its a wonderful support group for AS very active I am there under a different name .
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/11/2007 10:19 AM (GMT -7)   

Marie...

Thank you so much for the link to kickas.org. I am starting to realize that I most likely am looking at AS.

Pains started in my ankles, then knees some months later. This kept up for about a year then I started having small pains in my rear end. Hurt when I sat and got better when I got up. That came and went a few times to, and then the ankles and knees inbetween.

Lately I have gotten the buttpain back, and it is there daily now and my neck along with it. I have daily pain in my toes, feet, fingers and wrists as well.

Guess I need to make a new appointment with my rhuemy...

Thanks again for that link.. you just helped me more then you know...

Pia


Chrons - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
PCOS - July 07


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 11/11/2007 11:58 AM (GMT -7)   
http://support-mobility.drleonards.com/Support-Mobility/Cushions-Pillows/Comfort-Cushion/29736.cfm

you need to get yourself of special pillow to sit on I know that tail bone pain is terrible i have this pillow . I have one in my recliner and one in my bed fro sleeping. I cant be without it or my tailbones gets sore and tender. If the link does not work to Dr.Leonards.com its item # 29736 comfort pillow 14.99 on sale. You can call your local medical supply and ask for a coccyx pillow . Coccyx is the tail bone.
I also have a 2 inch pad of that memory foam it is a godsend for my back . They have them at JC pennys for a good price . I got a twin for just my side of the bed.
Please be sure to sit out and get at least 20 minutes of sun its very important for peeps with AS we need to feed our bones every day.
Welcome, sm

When you go the the kickas site look to the left at Forums Main index click on that then go to #1 Web support group click on there thats where we hang out and post. you need to register to post but i dont think if you are only lurking.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)

Post Edited (Sugarmarie) : 11/11/2007 12:52:14 PM (GMT-7)


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 11/11/2007 3:17 PM (GMT -7)   
Hi Pia,
There are quite a few of us who also have AS or some other form of Spondyloarthripathy (SpA). Many will tell you that the joint problems are far worse than the gut. That's the case for me.

To be honest, I couldn't tell you which began first. I complained of stomach pain and joint pain all through my childhood. The beginning of my road to treatment came at age 13, when I was Dx as having tendonitis in all the extensor tendons across the top of both feet. This type of soft tissue inflammation is often the early stages of AS. I suffered with all sorts of tendonitis and bursitis issues through my teens.

My first really bad gut flare occurred when I was 15. I had a significant weight loss, constant diarrhea and lots of gut pain. After a week in the hospital, the Docs were baffled. They thought my pain sounded like classic gall bladder disease, but the tests were normal and I was "too young" for that. I was sent home and Mom was told I ws anorexic. Thank goodness she didnt buy into that! She knew I loved to eat and that theree really was something wrong. We just didn't find the answer.

Suffice it to say that I didn't get a real answer about anything until I was 37. The gut flares continued with hospitalizations every 2 to 4 years for the severe episodes and I leanred to live with the mild to moderate symptoms.

Back to the joints. At 15, my knee got really bad. I was told that the problem was the result of my hips widening during puberty and that it would resolve with time. At 19, when it swelled up again and I could barely walk, I had exploratory surgery. (This was before MRIs). They found that the synovium (joint lining) was so inflammed that it was being pinched and cut up between the knee cap and thigh bone. Another classic for early AS.

I didn't tolerate NSAIDS well, even though I tried almost every one out there. Often, I felt as if I had to choose between relieving my joint pain or suffering with a bad gut.

At 24, they thought I had a torn rotator cuff. That turned out to be only more inflammation and joint space narrowing. Can anybody say EARLY AS? Apparently the Ortho couldn't.

By the time I was finally Dx with Crohn's, I had learned enough to be certain that my joint problems were likely AS. I got a referral to a Rheumy and he Dx me at the first visit based on my physical exam, decreased ROM and history. The bone scan showing arthritis in my shoulders, hips, knees and ankles, the x-rays showing sclerosis of the facet joints in my lumbar spine and the bone denistometry showing osteopenia clised the Dx a few weeks later.

I've had a lot of pain from my R SI joint over the last 4 years although radiology tests don't show any damage there yet. My Pain Doc has been injecting that joint with steroids and it brings a great deal of relief. I am certain that I wouldn't be able to walk without these injections.

Now, I'm being treated by my Rheumy for the AS with Humira and a low dose of pred. This has done wonders for both my joints and gut. Although I'm not exactly wonderful, I am much better than I had been and I don't have any complaints.

I found some great info and support through the SAA as well as kick as. Here's a link to their site:
http://www.spondylitis.org/main.aspx
They also have a great message board. I am "Wormy" on that site.
http://bbs.spondylitis.org/cgi-bin/ultimatebb.cgi?ubb=forum;f=1

I'd suggest that you do some reading about Spondylitis and get a referral to a good Rheumy who can Dx and treat you.


Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator

Post Edited (Keah) : 11/11/2007 3:30:00 PM (GMT-7)


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/12/2007 2:47 AM (GMT -7)   
Wow... do I relate to your story Keah!

I haven't had this since childhood, but it started in 2000 and that would be about 6 years before I found out about Crohns. I have a very mild case of it (so far anyhow). I am actually med free and using the toilet 2-5 times a day. No bad cramps, only formed stools that are looser then normal. The joint pain is ALOT worse then the bowel problem. It has gotten to the point where I can't sleep and it stays with me daily. I have tendon, ligament and jointpain. My whole body feels inflamed even tho I don't have any redness or swelling at all.

My pain started in my ankle in 2000. It was during a vacation in Disney World. My husband had to rent a wheel chair, because I had so much pain in my ankle. I didn't even think any more of it after my other ankle and then my knee started in. It would come and go and I thought my shoes were causing it.

A few months later I woke up with bad ribcage pain. It hurt to breath. I had many episodes like that, but they were very shortlasting, and I never made anything of it other then blaming my matress. I still have this happen from time to time. My hips started hurting aroud this time to, but now my hips are the part of me that cause the least pain.

When I was seeing doctors for the gut thing. I kept complaining about my right rib feeling tight, or like I had something pushing on it from inside. Then I had mild pain that would rap right around to the back. My doctor said gallbladder too!!!!

After the IBD diagnose in June last year, I started connecting the pieces and understanding why things like vacuming were so hard on my back and shopping would leave me in so much pain. I heard the doctor tell me that my IBD could be the cause, but he never mentioned anything like AS. All I knew was that my whole body felt inflamed. All my ligaments/joints/tendons or whatever were in pain more or less all of the time. It was tolarable tho.

Anyhow last fall I started having pain in my tailbone. It didn't last very long and I just figured I had been sitting on a hard surface for to long. Then it happend again. This time lasting a while longer and I started looking for a reason on the net. I was sure it was my tailbone. At the same time I started having pain in my chest, and worrying that it might be my heart. No pain while breathing and no pain in my arm, made me stop worrying and start looking for other causes.

Then it hit me hard!! My whole body was in pain. My ankles, one of my knees, my buttock hurt around the gluetal cleft and so did my lower back. My mid back felt tight and the base of my neck felt like someone put a knife into it and started twisting. My fingers, toes, wrists and the top of my feet hurt with shortlived sharp pain that kept moving around. That started 2 months ago and I am still in agony.

I do have an appointement to see my rhuemy, but that isn't until the end of November. I joined spodylitis.org yesterday and I have already been asking all my newbie stuff.

Thanks for sharing your story, make me even more confident that I am on the right track.

Pia
Chrons - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
PCOS - July 07


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/12/2007 3:34 AM (GMT -7)   
Are any of you HLA-B27 positive?


Chrons - Aug 06
Hypothyriodism - November 06 
Hypertension - March 07
PCOS - July 07

Post Edited (PiaSava) : 11/15/2007 2:28:48 AM (GMT-7)

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