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Anyone diagnosed with Spondylitis?

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Posted 12/15/2007 4:14 PM (GMT -7)
I have chronic back and neck pain.  Right now I can barely move my neck.  The pain is getting to unbearable.  Today is the worst it has been in a long long while.  I've been reading up on Spondylitis and wondering if anyone here was diagnosed with it.  They think there is a link between that and IBD. 
Posted 12/15/2007 4:51 PM (GMT -7)
OOOOOOOOOooowwwww, Trixy! I'm sorry you're hurting. From what I've read in the past about ankylosing spondylitis, it is more likely to affect male UCers. There was a member writing here last winter, AngelsCry, who had it-- but he was on a med for it that worked well. You likely need to check it out with the doctor if topicals don't relieve your pain. Take care. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 12/17/2007 10:49 AM (GMT -7)

Old Hat -

Thanks for that info.  I saw my doctor today.  My girlfriend has spondyloaropathy and her symptoms sound exactly like mine.  Her Rummy keeps testing her for an IBD since they go together.  Fortunately for her, she doesn't have any.  I also developed this "lump" where the Adams' Apple would be if I were a man and it is super tender to the touch - and painful if accidently hit. 

So the first thing he said is it sounds like my Thyroid or the Thyroid Cartalidge is inflammed.  He couldn't believe how tender it was when he touched it.  Thankfully not cancerous!

Then he ran some blood work on me and is doing a Rheum. panel, ANA, CRP and some Thyroid panels to see what is going on.  My last CRP was 19, but my UC was flaring that time.  I'm very intersted to see what the results come back as this time.

For now, he told me to take Tylenol for the pain since as you know, we can't take much for join pain, etc.

Posted 12/17/2007 12:23 PM (GMT -7)
I have been having a ton of back/neck/hip/shoulder pain for the past few years. The back and hip pain has increased severely in the last 6 months or so. So, I went to the doctors and she diagnosed me with Sacroiilitis which is another inidicator to AS. I go in on Thursday to see about having steroid shots in my SI joints to help ease the pain but I am going to persue the matter more in depth with a Rheumy. People with IBD do have a higher incidence of AS or any other form of arthritis in the spine and joints. It's good that they are doing a work up on you. One med that helps with my back spasms and even my neck pain is Skelaxin. If the Tylonel doesn't seem to be doing much, maybe you can ask for this? It doesn't help the joint pain but it can help loosen the muscles surrounding the tender joints.
Posted 12/17/2007 2:28 PM (GMT -7)
Good that you went to have it checked out, Trixy. It must be weirdly uncomfortable to feel so tender in the thyroid area. Let us know how you're doing.                              Red_34, I had a terrible time with sacrum during my early yrs with UC. It made me so stiff I felt like my torso was encased in cement! After I did about 12 weeks on Cortenemas it finally let up. I wish you good luck in finding relief for your pain. / Old Hat (nearly 30 yrs with left-sided UC ....[etc.])                                  

Posted 12/17/2007 6:41 PM (GMT -7)
Old Hat - thanks! it is weird with this pain in my thyroid. I had it before, but it went away pretty quickly so I never went to the doctor. It's odd too when the collar of my coat hit it when I sat down. I nearly went through the roof. hahaha.

Red - how did they diagnose you? I'm sorry you have been having issues. I have always had back issues. My lower back went out when I was 15 and the doctor said it was from sports. I read that AS or Spondyloaropathy begins at a young age and is often misdiagnosed and diagnosed as a sporty injury. Ha! Over the years, it has moved up my back and seems to settle in my upper back and neck. Thankfully, the really bad pain only lasts a couple days, but the pain is dull aftwards and constant. So far the Tylenol is helping. I was almost walking fast today at work, but then I'd went too fast and was in pain again limping along....LOL. I've also had pain in my heels in the morning. I just read that it is a another sign of AS.
Posted 12/18/2007 4:58 AM (GMT -7)
I haven't been officially diagnosed with AS yet, though I strongly suspect that I may have it or maybe another form of it. But like you I always had issues with my back and hips. As a teen I thought my back was supposed to hurt when I stood for too long - I didn't know that wasn't normal! Then when I got older (mid 20's), my back went out on me too and I had to go to the hospital because lordy did that hurt!

But so far, I have gone to physical therapy, which did wonders for my upper back but hardly did anything for my lower. Tried many different drug combos. None of which worked for my lower back. I also have 3 twisted vertebrae (2 upper and 1 lower). I don't have the heel pain like you though. Did you know that eye inflammation such as Iritis is also an indicator of AS (noticed that in your sig which is why I brought it up)?
Posted 12/18/2007 4:33 PM (GMT -7)
Sherry - I totally forgot about the iritis thing. The signs are all there so I'm convinced this is what I have.

So, the physical therapy worked for your upper back but not your lower back. Have you tried a chiropractor? I find that it helps, but it seems I have to go back sooner each time for another adjustment. I can't stand for long either. I hate when I have to cook anymore b/c standing messes up my back and forget when I have to clean the house. LOL. One day of cleaning throws it out for several days and I can barely walk. It's sad really.

Have you noticed that when your UC flares, your back and neck go out? I have and the last time I brought this up with my GI (my elbows usually hurt too), my GI said, that would have nothing to do with your UC. Seriously, how can he even justify that statement, especially since I've been experiencing it and now just read that it is common in AS to have a flare up when their UC is flaring. Seems like they are linked.

Do you find yourself self-diagnosing? LOL.
Posted 12/18/2007 5:25 PM (GMT -7)
No I never tried a chiropractor because it sort of scares me to tell you the truth! I have had such issues with my back that I get leery of anyone messing around with it. My SIL keeps trying to get me in and see hers so maybe one day. Oh and I know what you mean about cleaning! Like today, all I did was clean the kitchen and bathroom and I had to lie on the floor afterward just so I can ease the pain off my back. Of course though, my back goes thru horrible spasms in order for me to find relief if that makes any sense?

I think I really noticed my back/hip pain in my last flare. So I know it definately flares up with my Uc flares. Now that my Uc is under control, my back/hip pain is still there but now it just doesn't feel like I have someone shoving hot pokers into my hips. Also, when I would have my periods, my hips would really hurt for the first 3 days then it would ease off.

But yeah, I self diagnose all the time - or used to anyway! Now I try to stay away from Mayoclinic.com and WebMD because before I know it, I'm dying of some rare tropical disease! LOL
Posted 12/18/2007 7:39 PM (GMT -7)

But yeah, I self diagnose all the time - or used to anyway! Now I try to stay away from Mayoclinic.com and WebMD because before I know it, I'm dying of some rare tropical disease! LOL

tongue I totally know what you mean.  When I was first diagnosed with UC, I was on the net looking for all sorts of information.  I came across some really odd things such as .... "It's a gay man's disease"  You have no idea how freaked I was.  When I called my GI in hysterics, he told me to get off the net and if I had any questions to call him.  He got a good laugh.
Posted 12/18/2007 10:56 PM (GMT -7)
Hi Trixy,

I am sorry that you are not feeling well. I was diagnosed with Spondyloarthropathy around 16 years ago. I was around 23 years old; however, I think I was suffering from the disease at least a few years before diagnosis. I have the arthritis in the hips, spine, shoulders and sternum. The disease is not as severe as it used to be. When I was in my early and mid 20's there were times that I could not get out of bed. However, now I am doing better. Swimming laps has helped quite a bit along with a somewhat healthy diet. I also have Ulcerative Colitis. There is definitely a link between this type of arthritis in IBD. During flares I usually get accupuncture done to relieve the pain and inflammation. Also, I use Mobic sparingly since it is an Nsaid which can make UC worse.

I hope the tests you had done help to figure out what is going on with your health. Hope you feel better soon.

Regards,

Red Plum
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