Anyone else suffering from Spondylitis? I could use a group hug...

[jolara]

Hi Everyone! I'm a 41yr. old female and I'm looking for some comparisons with others who have been DX'd with AS.  I've been suffering from back and neck pain for a few years now but I was seeing the wrong Dr.'s for it I guess. My lower back pain started when I was 18 and pregnant with my first child. Since then I was guaranteed a once a year lower back pain that would last 2-3 wks then go away. I couldn't sit, stand, bend over, nothing. No position was comfortable. Fast forward 4 yrs. ago and I got the 'chronic kink' in my neck. I went to a Chiropractor who took X-rays and said I had 'something' (he may as well have been talking a foreign language to me, I wasn't understanding what he was saying.) He pointed out that I had 'something' in my neck region that was causing my pain and 'something' in my lumbar area that was causing my lower back pain. But because I was hurting so bad in my neck, I decided to concentrate on that instead of my lower back. He tried to adjust me and I was bawling from the pain. I went 3 or 4 times and each one ended the same so I quit. I felt like I was getting no where and doing more harm than good. My lower back pain was now showing itself a little more often. I finally found an Ortho who did an MRI of my neck and it showed issues with C3-C7 with C5-C6 being the worse. It mentioned I had Spondylitis going on which had caused a bone spur to protrude into my spinal canal. I had an ACDF which eventually helped with my neck pain. Now my lower back is getting really bad. I have a hard time getting up from a bent over position. If I sit too long, I have a hard time standing up. What I never understood is that my lower back pain isn't in my spine, it's off to the sides where my butt & lower back meet. I've only experienced Sciatica pain once and that was about 4 wks ago where I felt a pain shoot down the front of my leg down to my feet. I've also been experiencing foot cramping and leg swelling, especially at night. I swear my calves, which are normally thin look like I have elephantitis! For whatever reason, I get so amazed at how big my calves are, that I don't notice my knees. (The Dr. says I need to see if my knees are swelling too.) Anyway, I've also been experiencing terrible fatigue, my low back pain is keeping me from sleeping good at night and my hands are swollen and stiff in the morning and at night. The bottom of my feet hurt, specifically the bone on the underside where my big toe would meet (ball of my foot?). I have recently (since before my surgery) have had what I called 'episodes' of bad belly issues. I will go 2-3 months where all is great, then I will have a 2-3 month episode where I wont eat much because I can't stay out of the bathroom. I will go 5-7 times a day and feel like I still need to go, I also experience red blood in my loose stools and a ton of mucus. :0(   So fast forward to recently and my youngest daughter was just diagnosed with Sjogrens. I knew from my surgery that I had arthritis and with my hands and lower back giving me such grief, I decided to see my daughters Rhuemy. Well, she did the whole battery of blood tests. RA was neg. ANA was neg. Thyroid was normal but then she says that I have low Vit. D and put me on a prescription for this insane amount (50,000 mg?)and I tested positive for HLA-B27 gene. What in the world does that mean??? I ask. Well, she said that it's associated with Ankylosing Spondylitis. I then interrupt her, "Wait, that sounds familiar! Didn't my MRI say that I had that?" Yup. See, in my ignorance, I assumed that when they did my ACDF that they 'fixed' me and it was gone. I didn't realize that AS was an actual disease! The Neuro Surgeon who did my fusion never said anything about it, neither did the Ortho Dr. So now here I am. The Rhuemy is sending me to get my lower back, hips and Sac joints X-rayed and I need to see a GI specialist for the bleeding and bowel issues. I already know the Xray is going to show 'something' going on in my lower back, since I remember the Chiro stating so about 4 yrs. ago. So, I'm asking those of you who have AS...does what I'm experiencing sound familiar? I could really use some support and a hug...I've been searching for answers as to why I feel so yucky for so long and I think I finally found one. Sad thing, is after reading more about it I not only got the 'ding', 'ding', 'ding, we have a winner!' thought in my head but it is a scary and horrible sounding disease!!!

[jolara]

Thank you everyone for your comments, I really appreciate the replies! :0)  I've had a lot going on the last couple of months, I hadn't checked this site to see if I had any responses. I'm still yo-yo-ing emotionally in regards to my diagnosis and my pain. I will have a pity party for one on occasion then get upset at myself for not keeping my chin up. My Rheumy did Xrays and MRI of my hips and lumbar and it showed arthritic deterioration but thankfully no ankylosing. My AS symptoms are getting worse but I'm just trying to live life day by day and to try and keep moving. Unfortunately I have both OA and AS, so I need to keep moving for the AS but I can't over do it because the OA will give me a spasm. Oh joy! I went to a GI specialist who did a colonoscopy and says I have IBS (I didn't know bleeding was a symptom.). I decided to try a gluten free diet to see if I might have a sensitivity. I am currently in my 4th week, although I know for a fact I've consumed a bit of gluten here and there without realizing it. For the most part, I'm GF. I plan to do the gluten test in about 2 wks. I will make myself a big sandwich with 'normal' bread and drink a beer made with barley and see how I feel. :D I'm hoping this is the cause of my tummy troubles. Next experiment will be to exclude dairy and see how that goes.

Thank you again for the responses and the hugs, I sincerely appreciate them! :0)

[trying43]

Oops accidentally hit post before I was done!  Hard to do this on my phone!  With the help of my doctor we were finally able to find a cocktail of meds that made me feel human again.  Topamax because I was having severe headaches and some seizure activity,(not sure if that is as related or just coincidence), celebrex, plaquinel, tramidol(for pain) and flexaril.  I am now experiencing my symptoms again but only because we wanted to have another baby(took us over a year had some fertility issues but we did it and she's here!) And I am nursing her so none of the above meds are compatible with that.  I want to get her to a year if I can make it but as bad as things have been as of late I don't know if I can.  I do know what ur going through and hopefully u will find some meds that will work for u.  I have noticed that cutting out refined carbs and sugar and eating more protein and veggies and fish oil supplements and a multivitamin help some too.  Good luck to u.

[trying43]

Hi there I have AS and it ***** to be in the" club"!  My symptoms began in 1997 and I finally got a diagnosis in 2008.  Pretty much a lot of ur symptoms I have except the bowel issues.  After seeing many doctors I finally found one that actually did her job!  I too tested positive with hlab27 gene.

[thestranger25]

I hope you feel better and establish a exercise/nutrition/medication regimen that would best alleviate your symptoms.

[thestranger25]

I don't have AS, but I do have a form of spondylitis that developed after an acute osteomyelitis infection. I take methotrexate.

[carolanivey]

I don't have AS, but just wanted to add my hug! I've been offline for a couple days. :)

[truredhead]

You know what, I have the same symptoms you have! After I sit for awhile, I can not straighten up! I also have bad pain in wrist under thumbs. I had a MRI of lower back and spine and it says I spondyloarthritic changes seen in lower lumbar spine and severe biformal narrowing. Also grade 1 retrolisthesis of L5 on S1. I am not sure what that means but doctor said I had arthritis and recommended injections in hip and lower spine. Hips showed bursitis and arthritis. I have read about spondylitis and It sounds just like what I have been through. I have been diagnosed with fibromyalgia too, I think it may be alot of the spondylitis symptoms.

[jolara]

Well, I feel like the girl at the prom who sits in a corner because no one will dance with her... Apparently no one can relate with me. :0(   thanks anyways.