Chat Now!   Member Gallery    Member Articles    Games   Member Groups   Member Blogs   Health News    Bored?

Author Topic: Ankylosing Spondylitis  (Read 342 times)

0 Members and 1 Guest are viewing this topic.

Offline seychelles311

  • Jr. Member
  • **
  • Posts: 96
  • Country: us
  • Rec's: 2
  • Gender: Female
  • Mood: Worried
    Worried
  • Personal text
    • Poke This Member
Ankylosing Spondylitis
« on: March 04, 2014, 04:09:12 PM »
Since late October I've been experiencing pain in my hip, low back, butt, pelvis and legs. The pain will flare up for a few weeks, get so severe I'm almost in tears, and then subside and I feel completely normal again. I've been to countless doctors since then, and they've said it could be anything from musculoskeletal issues, to endometriosis, to ovarian cysts (which I do have). So far I've had 2 ultrasounds, an MRI, full bloodwork, and x-rays of my spine in an attempt to get to the bottom of this.

During my most recent flare up, I went to the urgent care and the doctor there took x-rays of my spine and told me there was "sclerosis" in my sacroiliac joint (not MS, just regular sclerosis, whatever that means). He told me he thinks I have a condition called Ankylosing Spondylitis (AS), a form of rheumatoid arthritis, and that I needed to go to a rheumatologist. When I got home, I (of course) immediately began researching this condition. When I found out it was an autoimmune disease I totally freaked!!! Apparently, as the disease progresses your spine can just fuse together, and so can the cartilage in your ribcage, so you end up being a bent over humpback with a restricted chest cavity and reduced lung capacity! And the only treatments are massive quantities of NSAIDS and biologics, which lower your immune system, which I would never even consider! :( I've heard too many horror stories of people on those immunosuppressive drugs dying from simple infections and common colds. I may as well have HIV/AIDS if I take those! Plus the drugs aren't even pills, they're injections, which I'm absolutely terrified of getting.

I'm freaking out worse than I ever have about any potential disease ever, and I'm really hoping someone one here can maybe provide some comfort or advice. I had 2 blood tests done, HLA-B27 and a blood sedimentation test, and both came back negative/normal, however I am severely deficient in vitamin D. When I got the test results I thought, ok, normal means it's not AS, but when the urgent care doctor called me for a follow up he told me he still thinks I have it because of the x-ray "sclerosis" and because it responds to ibuprofin, and I still have to go to a rheumatologist!! I don't even understand, because everything responds to ibuprofin. He told me that's an indicator of the disease, but I've had regular sprains, dental pain, period cramps, pulled muscles, etc. respond to NSAIDs too so I don't see how that's such a definite indicator.

I'm so terrified that I will be bent over, in constant pain, and on oxygen by the time that I'm in my 40s (I'm only 27 now), my health anxiety is through the roof, and I can't even get in to see a rheumatologist until next week. Anxiety medications aren't helping at all, and I don't have a therapist right now.

Does anyone have this disease, or know someone who has it? Everything I've found online, literature about the disease and personal stories alike, have been HORRIBLE! Depressing, morose, terrible prognosis...basically a slow, painful death and a life of misery.

I've never been so depressed or afraid. I've been praying every day that I don't have this disease, and by some miracle it's something more benign. Please, if anyone has any input about this that isn't going to bring me to tears I would be eternally grateful. I'm having a terrible time dealing with this, and my family and friends have dealt with so many false alarms because I have HA, now that I have a potentially real disease they all just dismiss it and no one has been supportive at all. I don't mean to complain, none of us on here ever do, I just need to connect with people who understand what it feels like to have severe HA and face the possibility of a real, actual, lifelong, debilitating disease.
Bookmark and Share

Offline bpadilla49

  • Hero Member
  • *****
  • Posts: 515
  • Rec's: 4
  • Gender: Female
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #1 on: March 04, 2014, 04:27:37 PM »
Hello there!

While I can't say I have or known anyone who has AS, I can offer a shoulder and some relation to what you're going through.

I was referred to a hematologist because my blood platelets were low. I immediately thought I had some type of leukemia or bone marrow disorder. After numerous blood work (including blood work for rheumatoid arthritis and lupus) we've found that I have an autoimmune disorder that attacks my platelets and if they get too low, I will need to go on immune suppression drugs in order to prevent internal bleeding....begin freak out in 3...2...1...

Oh yeah, and I already have an autoimmune disease that attacks my thyroid. yay me.

Anyway, this evidence you have is based on one doctor. An urgent care doctor. Not a specialist such as a rheumatologist. Don't freak out yet. And there's no need to freak out yet about immune suppression drugs. Confirm a diagnosis first. Go over treatment options with your SPECIALIST. Talk to them about your fears and concerns.

I am in the same position when it comes to telling family. Most of the time I don't discuss any "symptom" with them anymore because they brush me off and label me as a hypochondriac...which I am...but they don't understand.

Anyway, I'm here for you if you'd like to talk.
Bookmark and Share

Offline seychelles311

  • Jr. Member
  • **
  • Posts: 96
  • Country: us
  • Rec's: 2
  • Gender: Female
  • Mood: Worried
    Worried
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #2 on: March 04, 2014, 04:44:20 PM »
Thank you so much for responding!

Oh my gosh I feel so bad! You have 2 autoimmune diseases, and I'm sitting here complaining about 1 that hasn't even been diagnosed for sure yet. I wish I could just give you a hug and be there for you because that is so scary, and I know just how you feel with family not taking you seriously. It's so hard! They don't understand that, even though we get scared about our health, a lot, it's still terrifying every time and the fear and the pain is so real and life-consuming.

How have you been dealing with your confirmed autoimmune diseases? Emotionally I mean. Is there anything in particular you might recommend that has helped you through that type of news (specific therapies, anxiety medications, etc.)? Have you ever tried taking any of the immune suppression drugs? I know you're right, and I shouldn't prematurely freak out about that, it's just that the drugs are one of my biggest fears. If you've tried any of these drugs, what are they like? Are they as awful as the commercials and reviews make them sound?

You're right about the urgent care doc too. No other doctor that I've seen since this started (and I've seen a lot) has suggested AS, just him. I know that the specialist next week will be a lot more informed about these specific types of autoimmune diseases. It just came as such a shock when he said that to me. I was expecting him to come back and say the x-rays didn't show anything, or that I had just pulled a muscle or something, so when brought up AS I just totally freaked. And I think my stupid HA is making my symptoms worse. As soon as I found out my ribcage could fuse, I started feeling chest pains and having trouble breathing, even though I wasn't having any problems before, but now that the symptoms are there they won't go away, and it's just making my anxiety worse, which is making the symptoms worse. :(

Anyways, thank you again so much. I'm so sorry to hear about your conditions, and I truly hope that you find effective treatments that aren't horrible and cause more side effects than they cure.
Bookmark and Share

Offline xxAmyxx

  • Full Member
  • ***
  • Posts: 203
  • Country: us
  • Rec's: 1
  • Gender: Female
  • Mood: Okay
    Okay
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #3 on: March 04, 2014, 05:29:06 PM »
I'm sorry you're going thru this. Hopefully the specialist can give you a definite answer. When you said AS, it reminded me of this girl, I've seen her kettlebell workouts on YouTube. She's had AS for over 6 years and is doing great (NOT saying you have it, but just in case you want to see someone that is dealing with it). Here's her website. http://www.myomytv.com/archive/about/marianne-kan/
Bookmark and Share

Offline bpadilla49

  • Hero Member
  • *****
  • Posts: 515
  • Rec's: 4
  • Gender: Female
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #4 on: March 04, 2014, 06:39:26 PM »
I look at my conditions in a pretty great light - considering I have a cancer phobia.

The way I see it is - hey, it could be a thousand times worse. I've never needed immune suppression drugs. I just was officially diagnosed with the platelet disorder about a week ago, and all we're going to do is monitor my blood work every three months. If it gets to a point where it's low, then we'll talk about it then. Right now my platelets are JUST outside of the normal range, and sometimes even within the normal range. So just monitoring.

And with my thyroid, they never prescribe immune suppression for that. I just take my thyroid hormone replacement and again, have my blood work checked every few months.

Things become more complicated if I get pregnant, however. I already have two beautiful children (can you tell I'm biased? lol) and I never saw myself with just two. I've always wanted three. But now with this platelet diagnosis, it complicates things, because my platelets will more then likely drop during my pregnancy, and that complicates things when it comes to delivery.

So how am I doing? Great! I don't have cancer (...that i've know of)! Things could be much worse! So I'm thankful that I have the health I've got! And I'm trying my best to be content with two children. My husband and I have decided not to try for a third unless we both receive the "go ahead" from God. And if/until that happens, we're trying to be content and thankful for the moment.

By the way - when my hematologist was testing me for RA and lupus I was asking her about medication for both of those conditions - she told me that sometimes, there's a small chance you can get lymphoma, as the commercials say. But not all people are put on meds like that. And the chances are small of getting cancer while on those drugs.
Bookmark and Share

Offline Jen0721

  • Newbie
  • *
  • Posts: 15
  • Rec's: 0
  • Gender: Female
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #5 on: March 04, 2014, 11:25:09 PM »
I certainly sympathize with your fears.  I have had very similar concerns, including AS.  I had blood tests as well and found out that I too am vitamin d deficient (and nearly vitamin b deficient).  Have you started taking vitamins since you recieved the results?  I noticed a bit of difference...not as many joint pains...I've only been taking them for three days.  Something to think about if not.  Hang in there. All will be well.
Bookmark and Share

Offline michelle360

  • Sr. Member
  • ****
  • Posts: 290
  • Rec's: 5
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #6 on: March 05, 2014, 12:29:12 AM »
Well I feel I can offer up some insight on both the sacroilliac joint issues and auto immune diseases. I have MS and sacroilliac joint dysfunction (unrelated to the MS). SI joint pain HURTS!! I am sorry you are having those issues! I am not on any immunosuppressant drugs but DO take disease modifying injections everyday for the MS. It sucks at first and I used to be a needle-phobe, now it doesn't even phase me - honestly. I'm glad for the medications because they have made me feel better and will help me in the long run. For the anxiety I went on meds for awhile and am still on a very very low dose AD. I also go to therapy regularly and work out. I can say I am 90% anxiety free and when I do have it it's completely situational, manageable and fleeting. I look forward to being off the meds soon here (going on about 9 months now). I guess I am just trying to illustrate that you get through things, there is always hope. You are a lot stronger than you give yourself credit for. It sounds completely cliche I know, but I was exactly where you are now this time last year. This was all pre diagnosis of all of the things I have listed. It's been a difficult year and I am not the same person now. I'm better. You will be too.
Bookmark and Share

Offline tymommy

  • Jr. Member
  • **
  • Posts: 61
  • Country: us
  • Rec's: 2
  • Gender: Female
  • Mood: Depressed
    Depressed
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #7 on: March 05, 2014, 12:53:53 AM »
Ok ;DamazDamazingthat there's another person out there with this!my husband is 26 and was diagnosed a year ago.hes been on enbrel,i know terrifying. But anklyosing is very treatable and can be put intob remission.most people diagnosed young are in remission in 2yrs. Then they're likely to stay in remission. My hubbyvhad a back injury that triggered the onset.vitamin d deficiency will cause pain.take a supplement for sure.dont be scared you'll feel better now .i promise. You're so young and will bounce back in no time<3
Bookmark and Share

Offline greend

  • Hero Member
  • *****
  • Posts: 929
  • Country: ca
  • Rec's: 8
  • Gender: Female
  • Mood: Okay
    Okay
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #8 on: March 05, 2014, 08:48:26 AM »
I have an acquaintance that was diagnosed with it about 10 years ago.  I don't really keep in touch with her on a personal level, but I do run into her from time to time, and I have to say she is just fine.  She holds down a busy job, has 2 kids, goes on vacations, and doesn't look at all hunched etc.. You'll be fine, if this is indeed what you have.

Keep us posted!
Bookmark and Share

Offline seychelles311

  • Jr. Member
  • **
  • Posts: 96
  • Country: us
  • Rec's: 2
  • Gender: Female
  • Mood: Worried
    Worried
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #9 on: March 05, 2014, 03:20:11 PM »
Thank you so much xxAmyxx for the video link! It's really inspiring to see someone with this condition living a healthy and active life!

bpadilla49, I'm happy you haven't had to take any immune suppressive drugs and for now they're just monitoring your blood. I'm so sorry to hear that this might affect your ability to successfully carry a baby to term. You're so lucky to have 2 children already (I'm infertile, so this is unfortunately a dream I'll never realize), and I will pray for you that you are somehow able to have a third. If it's in God's plan, it will happen. :) You're right, at least you don't have cancer, and neither do I. I am also terrified of cancer (and rabies), so no matter what, at least I can say I don't have either of those 2 diseases.

Jen0721, I have started taking a BUNCH of vitamins and supplements, under the care of my naturopathic physician of course. For my vitamin D deficiency, my doctor prescribed me 5,000 iu of vitamin D per day. I'm also taking calcium, magnesium, iron, a multivitamin, 3,000mg of omega 3 (EPA/DHA), and a supplement called ibuActin, which I highly recommend. The ibuActin supplement is specifically designed for pain and inflammation, and contains hops, bromelain, white willow, papain, ginger, and turmeric (curcumin). I've been drinking green tea as well.

Michelle360, I'm so very sorry to hear you have MS! My great aunt had MS also, and although it was a very difficult disease to live with, she ended up living quite a long life and, as a woman of strong faith, was happy until the very end I'm glad to say. I'm very interested in SI joint dysfunction. As I have not yet been officially diagnosed with AS, the possibility of other SI diseases are still a consideration. I'd like to learn more about it. Your words here were very inspiring to me, and even though I don't feel strong, able, or confident right now, it's really encouraging to know that if you and other people in similar situations are making it through and finding way to cope, there's hope for me in my future also. I'm starting on a new anxiety med, and I'm searching for a therapist, so hopefully those things will help a lot.

tymommy, I can't believe I finally found someone who knows a person actually diagnosed with AS! It's pretty rare I guess. Has your husband had any awful side effects from the Enbrel, or is he doing well on it? Hopefully, if I am diagnosed, I will be able to manage it without these medications, but if I do end up needing them at some point, I'd just like to know what I'm in for. I didn't know AS could be put into remission either. I just started taking a vitamin D supplement, and ad a super high dose (doctor approved of course). My doc told me that a vitamin D deficiency can cause pain too, so I'm really hoping this will improve my symptoms in time. Tell your husband I will say a prayer for him, and I wish you both the best in coping with this disease. I know that being a caregiver and spouse to someone with chronic pain can be challenging, so I'm sure he really appreciates all that you do to support him.

And finally, greend, thank you so much for telling me about the lady you know with AS. It is so encouraging to hear that after 10 years she is still active and healthy. This is such a big fear for me!

I hope that I'm not diagnosed with AS next week, but if I am, the information, support, and encouragement you've all taken the time to give me over the past 2 days will have made a tremendous difference. It's even helping me to wait it out until my appointment. When I first found out I may have AS, I thought it was a death sentence, or at least meant a life of debilitating pain and physical deformation. To know now that it may still be possible to lead a normal, active and healthy life means more to me than I could ever express in words. Thank you and God bless all of you. I'm in tears writing this right now, but they're the good kind of tears. :)
Bookmark and Share

Offline phillygirl

  • Newbie
  • *
  • Posts: 4
  • Rec's: 0
  • Gender: Female
  • Personal text
    • Poke This Member
Re: Ankylosing Spondylitis
« Reply #10 on: June 15, 2014, 06:37:08 PM »
seychelles311 - I'm new here, but I've been dealing with autoimmune issues for almost a year now.  I had my first flare up of Anterior Uveitis last summer.  In my case it's an autoimmune issue that causes inflammation of part of the eye.  They've done genetic testing for me and have been asking me about back pain since the uveitis presented & I haven't had any until recently.  I've been under the care of a rheumatologist & she's doing bloodwork to confirm, but she's basically diagnosed me with AS.  I was curious how your appointment went & hope you're doing well. 
Bookmark and Share

Tags: