Ankylosing spond with strange symptoms

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

poobah
Regular Member


Date Joined Dec 2006
Total Posts : 136
   Posted 7/6/2008 12:39 PM (GMT -7)   
I've got bilateral SI joint damage on XR, and a moderate amount of pain there that has come and gone for years. Im HLA B27 positive. HOWEVER, 3 months ago, I developed crazy symptoms, and am cusiour to know if anyone else with AS has had similar symptoms.
 
my hands and wrists, as well as my feet and ankles are weak, sometimes achy, sometimes jittery.
 
i get alot of tendon pain in my arms and legs.
 
my hips (in my groin) feel stiff, somewhat painful all the time.
 
low back pain and stiffness.
 
achilles tendonitis.
 
my jaw is stiff at times.
 
im exhausted all the time and have difficulty concentrating.
 
chills and sweats all day and especially at night, but no fever.
 
I presume this is AS, but why is EVERYWHERE, all the time?  Its been going on for 3 months, and isnt getting better, how long do these flares last??
 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/6/2008 9:48 PM (GMT -7)   
Enthesitis, inflammation of the tendon at the point it attaches to the bone, is a common problem in AS. It is my most troublesome issue. It was well managed when I was on Remicade. In the 10 months I have been off Remicade, I have constant issues with enthesitis. I have had more cortisone injections than I can count. When I have bad flares, I also am prone to run fevers and have lots of fatigue. I'm not sleepy - just can't move . It feels like I'm slogging through sludge up to my neck.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


poobah
Regular Member


Date Joined Dec 2006
Total Posts : 136
   Posted 7/7/2008 1:25 PM (GMT -7)   
thanks ides, the slogging through mud analogy is perfet, that's exactly how i feel right now. my limbs are just heavy.
 
how long have you had AS? how often do you have flares and how long do they last? does your back give you problems? is yur avascular necrosis from steroids or the AS? 
 
 
 
 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/7/2008 3:18 PM (GMT -7)   
I was first diagnosed with Spondyloarthropathy [SpA] with enthesitis in 2004. Though I was HLA B27 positive, at that point I did not have sacroiliitis. Then my SI pain got really bad in 2006. I was diagnosed with sacroiliitis last year and the diagnosis was changed to AS.

My AS has been flaring since Remicade stopped working about 15 months ago. Literally every month one or the other of my tendons is so inflamed that I need to have a cortisone injection. I went on a short taper of prednisone [30 mg > 5 mg over 12 days] in May and felt great until I got off the prednisone. My rheumy had me do the pred because I had so many tendons involved and more calcification of the knees tendons.

My AVN has been attributed to my Crohn's disease. AVN is a rare extraintestinal manifestation of CD. My CD went undiagnosed [and therefore untreated] for over 25 years. Lots and lots of damage has been to my body because of that.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


poobah
Regular Member


Date Joined Dec 2006
Total Posts : 136
   Posted 7/7/2008 4:56 PM (GMT -7)   
its so freaking bizzare isnt it? looking back, i recognize mild intermittant symptoms i have had of AS over the last 12 years (kidney stones, "tailbone pain" once 10 yrs ago, that fatigued/heavy feeling i had 8 yrs ago that lasted for 6 months, a single episode of mild back stiffness).

but i really just had the hammer drop 3 months ago. CRAZY all over my body enthesitis, then back pain over the last 3 weeks.

I've got some undetermined IBD, probably crohns, which seems to be controlled with sulfasalazine (strange i know). Im starting enbrel wednesday because i can barely function due to the SI, back, wrist/hand, bilateral hip, and rib pain ( no swelling or redness, just pain). I've spent most of the last 3 months fatigued and in a fog.

this is the scariest thing that has ever happened to me. I was a (mostly) normal 34 year old 4 mnths ago - now i feel 150 yrs old.

sheryl=jk
Veteran Member


Date Joined Oct 2004
Total Posts : 4083
   Posted 7/11/2008 7:33 AM (GMT -7)   
I dont if i have As or not but all those symptms sound very familiar, my ankles hurts ;egs hurt, lower back hips. feet swollen, i was starting get signs when i was 32, now at 39, i do goood to walk, what the heck is going on with my body.  I have Pain specialist, but feel maybe i need a orthepedic surgeon too, facet injections are not helping. 2 lorabtabs a day is not helping either.
 
God Bless,and have a Great Day!!.......Love.....Sheryl
xcema,hypermobile,Chronic Bronchitus,Fatigue,Positive ANAFibro-05--Had surgery on left & right knees 06, Interstial Cystitis-06 Spondlylosis/Disc Degernation Disease severe arthitis lower back -08,implantedInterstim-06 hysterectomy & IBS-06 Arthiritus-04 Depression-04GERDS/ Hiatial hernia -07   Anxiety-07 Gastroparesis-08--Occasional Migraines
 Reglan,Protonix,Prozac,Wellbutrin,Erthomyicin,klonipin,occasional phernergan, loratab, zanaflex  marrried 2 children, 1 with mild autism, Bipolar(8),  Abilify, Buspar, Celexa Son(13) is bipolarw/migraines, Topamax, ZantacGod plz grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference..." Plz help HW to help others by donating: http://www.healingwell.com/donate/

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 02, 2016 9:47 PM (GMT -7)
There are a total of 2,731,950 posts in 300,977 threads.
View Active Threads


Who's Online
This forum has 151137 registered members. Please welcome our newest member, Country girl2.
263 Guest(s), 2 Registered Member(s) are currently online.  Details
NewspaperLover, cilly


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer