Ankylosing Spondylitis

Brosco1985
Brosco1985 Posts: 5 Member
edited May 2017 in Motivation and Support
I'm looking for others who have been diagnosed with Ankylosing Spondylitis and have learned to manage the flareups with changes to their diet and activity.

I'm a 31 year old wife of 9 years and Mom to two beautiful girls ages 5 and 8. I have a very successful career, however, very stressful and pushes 50+ hours per week. My husband, my daughters and myself packed up and relocated about 2 hours away from our hometown nearing 2 years ago now so we have no support system locally. I've struggled with my weight for my entire life, it's always on my mind. ALWAYS. I lost nearly 70 lbs after my first daughter was born, that's the most dedicated i've ever been to my weight loss and I felt GREAT! However, time went on and then another pregnancy and i've since (over 8 years) gained nearly all of it back. I'm 5'7 and weigh 194 lbs.

I recently had a crazy issue with my eye that led me to an eye specialist, it was diagnosed as Scleritis with Uveitis. This diagnosis is linked directly with having an autoimmune disease so off to the Rheumatologist I went. After blood work and an x-ray I was sent for an MRI and diagnosed with Ankylosing Spondylitis, it's a type of arthritis that attacks your spine and causes inflammation "flareups" to your joints and tendons. I've had an issue with my right hip and shooting pain since I had my (almost) 5 year old daughter. I've seen every type of doctor for it imaginable and i've always gotten no where. I have chronic back pain that radiates like fire into my ribs for a few years now and my neck is always in pain, my neck is the one area where the pain never lets up. I am now waiting to get in with a GI because apparently this diagnosis is tied directly with a form of GI disease as well, so i'm waiting to find out what that is going to be. My grandpa also has AS, a very extreme case. His spine, left hip, ribs and neck have all naturally fused together starting at the age of 18. I've watched him suffer with this condition for my entire life.

With that all said, I want to do everything I possibly can, within my own power, to help prevent my body from progressing with this disease. I've read a little bit but i'm always skeptical about what I read online, I like to hear people's personal stories of what works for them. I've heard that going Gluten Free, Dairy Free and Sugar Free (all together) has been extremely beneficial to some from a support group I have found. Are there certain types of exercises that seem to help more than others?

Thank you to anyone who is able to chime in on this, I appreciate it very much!

edited to add- I should mention that when I lost my 70 lbs, I was using MFP at the time, i've been a long-term member, however, I did delete my old account and start a new one when I decided to rededicate myself some time ago.

Replies

  • GrayRider61
    GrayRider61 Posts: 337 Member
    You can add me. I was diagnosed with DISH, which is very similar to your condition.
  • lwagnitz
    lwagnitz Posts: 1,321 Member
    Hi. I'm recently diagnosed, long time sufferer and looking for some others who may have experience with adjusting their diet as well. Have you heard of the London AS diet? It's basically limited starch intake.
  • canadianlbs
    canadianlbs Posts: 5,199 Member
    auto-immune diagnosis is such a bombshell. i don't have as and what i do have (ra) was diagnosed long ago and is pretty dormant right now. so idk if this will help you at all, but i'll leave it here just in case something does.

    first thing that strikes me is you could be looking at two separate things. one is controlling the disorder itself and/or reducing your flares. the second one is maximizing your life and and getting the most that you can ou t of it, as it already stands.

    controlling is medical. i won't go into the choices [or the opinions :tongue:] about trad versus alt, because that's a personal thing. i will say that even if you don't want to go there, any responsible rheumatologists that you see should at least talk to you about the 'traditional' medical pathways to handling a.i. if they don't do that then go and find someone else. i'm not saying you have to do 'it', but you need to have people working with you who will show all the options to you.

    for living your life . . . well, that too is personal. when i got diagnosed with r.a. i went through the local arthritis society's off-the-peg 'boot camp' programme. i hated it. every second of it, but i'm just naturally quarrelsome and there was a big dose of grief/rage going on at the time, so perhaps that's just me. point being that there are programmes and societies and all that, and even if you hate them it doesn't hurt to know where the pockets are that you hate. you should at least be given access to a physio, and possibly an o.t. and from there a lot of it is about just getting acquainted with your own self and your own 'manifestation' of the disorder, and then working out your own things for expanding into the new space that you're in.

    on a much much more general note, i probably flared up in about 2000, and was diagnosed in 2002. my own form of r.a. has been forgiving enough to allow me to do many things, and since i got into weight lifting a few years ago, one of the things i HAVE found is that exercising is quite a tightrope. for basics like walking and cycling etc, it's not such a big deal. but if you start getting into anything that needs technical help such as lifting, it can be difficult to find the sweet spot between people who'll take you seriously and 'allow' you to push envelopes, and the ones who don't so much take you seriously as have no idea that yes, an auto-immune disorder involving the joints does mean i'm different from everyone else.

    i'm sorry i don't have a whole quick-fix package, but nobody who has an auto-immune thing going on is exactly like the next person who has one as well. i hope everything does go smoothly for you, and don't doubt that there will be a path.
  • littlebear0121
    littlebear0121 Posts: 1,073 Member
    Hi, Feel free to add me as a friend if you are still active on MFP. I was diagnosed with AS about five years ago. I avoid dairy and sugar, dairy definitely helps. I was able to see a great physical therapist after diagnosis who showed me some helpful stretches for AS, and also got me hooked on Nordic walking. If you are interested, I can tell you both why I love it and why it's great for AS. Also, as for the diet, my disease (uveitis in both eyes, back and hip pain, and ulcerative colitis) is under control right now with Humira and methotrexate, so I'm not cutting starches at this point. I have a friend who has AS, and controls it completely by strictly following the AIP protocol. FWIW, I have another friend who has AS and tries to control it with the AIP, but she is not as strict and is in a lot pain :(
  • rhonbarr
    rhonbarr Posts: 2 Member
    I was extremely active up to about 3 months ago when a AS flare up put me off work at my job as a personal trainer and I eventually was fired for not being able to return to work, despite a letter from my doctor and therapist. All that drama aside, I am looking into ways to control this as my Dad suffered so badly with it. I am fearful I will also become immobile and extremely limited. So far, I am trying to reduce inflammation through diet and as much as possible, stay active. I am still in an acute phase and maybe a little stubborn, but, walking is really the only thing that doesn't leave me bedridden afterwards.
  • sgolden70
    sgolden70 Posts: 1 Member
    I have AS and Uveitis so I feel your pain. HLA B27 positive and ANA tiger of 640-1. I am on Humira and prednisone drops.

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