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Sherri’s Story (Ankylosing Spondylitis)

Sherri's Story (AS) LRHave you ever heard of ankylosing spondylitis (AS)? My guess is no, because I had never heard of it until I was diagnosed with it. AS is an auto-immune disease mixed within a sea of many auto-immune diseases,which most you’ve probably never heard of either. I hesitated when I thought about writing about this disease and my story, because quite frankly, it’s kind of a bummer to talk about. And as a busy hairstylist, the last thing I want are clients fearing that I’m sick or hurting and not come to see me anymore. But then I realized I was being silly, and how important it is for me to help spread the word about AS. There is so little information out there about this disease, and if only sufferers got diagnosed when onset starts, there would potentially be much less disability and depression associated with having a degenerating disease.

So to explain AS in simple terms, it is a disease located around the SI joint. To get diagnosed you need to get lots of blood work, x-rays, MRI’s, all to confirm an abnormality at this joint. Essentially, AS in an auto-immune arthritis of the spine, and the inflammation attacks the connective tissue between the vertebrae, muscles, ligaments, and joints. It’s core strain is on the low back and spine, but many sufferers have tremendous pain in their hips, knees, feet, neck, shoulders, and small muscles of their hands. Over time, many people with AS actually fuse in their spine or hips. Your bone literally creates a solid column of a spine which causes permanent hunching, and if your hips fuse you basically walk like a penguin. If you’re a Motley Crue fan you may know of Mick Mars, who has AS and is completely fused, hunched, and 3 inches shorter than he used to be (and pretty bad ass I may add).

So here’s the kicker about AS. Most people’s onset is around 15 years of age. Most people don’t actually get diagnosed for 10-15 years after that onset because the lack of attention to the disease in the medical community. The first time I had a severe flare up I was 17, and I literally couldn’t breathe the pain was so unbearable. My dad took me to the hospital and the nurse smirked at me and told me I pinched a nerve and to relax. I had these sort of flare ups time and time again, sought  help from doctors, chiropractors, acupuncturists  physical therapists, to no avail. Every doctor tried to treat me with pain medications, which did nothing. I didn’t get diagnosed until I was 28, so what damage has been done in the past 11 years? Having a degenerative disease means the damage done cannot be reversed. Why didn’t a nurse or doctor ever consider that something much deeper could be wrong? They always said I ”looked” fit and healthy and it was possibly from wear and tear on my body from my profession as a hairstylist. I begged for an MRI about 4 years ago after another flare, and the doctor refused because I wasn’t ”bleeding from my head”. Yes, they said that to me. If only people got properly diagnosed early on they may not have had to go on disability, they may still be able to be active, they may be able to pick their kids up and play with them, they may not be stuck in a wheelchair…

So how I finally got to where I am now is actually through an eye issue I was having. Everyone needs to learn from this part of my story, because your body is powerful and may be trying to signal you for some immediate attention. In 2% of people with AS, the disease can attack the lungs or eyes. I started having painful issues with my eyes about 2 years ago. Doctors thought I was allergic to something, that maybe it was the  chemicals at my work place, blah blah blah. Never got to the the root of the issue, but I’d have flares every 4 months and they got worse and worse. The biggest red flag with my eye pain was the light sensitivity. My cell phone light even blinded me in pain. Then out of the blue, my retina tore. Not sure if you know this, but young peoples retina’s don’t tear! I woke up one day, and had black squiggly lines everywhere in my eye and couldn’t see there were so many. After a laser procedure to close the tear, my opthamologist finally said I needed to get blood work done because my body was attacking itself. At this point, I didn’t even consider all my body pain, and would have never thought that this eye problem could have actually been brought on by a spinal disease. But sure enough, it was.

I had actually accepted my limited mobility about a year ago. It was as if my body was slowly breaking. My workouts created so much pain, my hips felt like a pair of 80 year old hips, my hands hurt so much, and my feet became so jacked up in pain I stopped wearing heels on a regular basis, which was huge for me! When you live in pain you don’t know how to compare what you feel to others you know? I knew I hurt, and it seemed like my friends didn’t have troubles getting up from chairs, but ‘oh, well’ this was just my life. Never did I think that it was a disease that was slowly eating me on the inside.

Treatment for Ankylosing Spondylitis is a must. It’s important to try to halt the disease and get it at some sort of standstill. Medication doesn’t work for everyone, but i’m in the beginning stages of trying it. Pain pills don’t really help the pain or fatigue associated with the disease, so inject-able medication seems to be the best option. Diet plays a huge role in overall health and disease prevention, so I’m taking that avenue as well.

There is no cure, and I’ve met many nurses who sadly have never even heard of the disease. This is why I decided to share my story, and educate anyone willing to learn about Ankylosing Spondylitis. My hope is one day kids will be heard and not judged. My hope is that people will know about AS like they know about MS and Lupus. With awareness there’s hope, prevention, and healing.

As for me, I’m doing good. Since I’m used to living the way I do, it really hasn’t affected my life much. The biggest and hardest way it’s affected me is through my workouts. I’m a freak for high impact, bootcamp, sweat your face off type workouts, which ruin my body now. I’m competitive with myself and always want to be the strongest, fastest girl in my classes! I’ve now learned to stop pushing myself and to listen to my body. If I think I can go for a jog then I will try. If I can barely walk because of the pain, I will take a day off from exercising. This is how it has to be, and i’m coming to terms with that. I’ve learned to be more compassionate for people with disabilities, and just more compassionate in general. And if AS is the disease i’m stuck with, hell I’ll take it. I believe in the power of the mind, and with a strong mind you can overcome anything. I feel lucky if this is the hurdle I have to get over, because I could very well be laying in a hospital bed fighting for my life.

Now you know what ankylosing spondylitis is. You know how it affects a person with it. If you can relate to any of this, remember, YOU need to be your own advocate and listen to your body.

Sherri B
California
Submitted 04-10-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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24 comments

  1. Your symptoms sound so much like mine but my dr says its just my fibromyalgia. Did you ever get diagnosed with fibromyalgia before getting to the more serious AS?

    • Hi Dana,

      I was diagnosed with fibromyalgia when I was 21 pretty much just based on my mother having fibromyalgia and my having all the pressure points positive. However, those pressure points will hurt if you have AS too!! I found out I had AS when the pain got so bad I was screaming because of it and I found out my grandfather had AS. I went to the rheumatologist and got blood work and imaging done and finally got diagnosed. My best advice if you think you may have AS is to go to a rheumatologist that knows about ankylosing spondylitis.

  2. My daughter and my ex-husband both have this. My daughter is taking the Enbrel shots and they seem to be working for her. Don’t know what my ex is doing, but, believe he has had many surgeries and is not in very good shape.

  3. Sherri-It’s great you are telling your story. I’ve never heard of this auto-immune disorder. I have 2 auto-immune disorders; Celiac disease and Rheumatoid arthritis. For the Celiac I must follow a complete gluten free lifestyle. Celiac and Ankylosing Sponylitis seem to have alot of the same symptoms. Have you tried going gluten free to control some of the symptoms that you are experiencing?

  4. Sherri-your blog caught my eye on FB because I have never really seen it discussed. I was diagnosed at age 55 after having several back surgeries, having to give up a career I loved, even had a doctor accuse me of being a drug seeker. Methotrexate & Enbrel for almost 2 yrs now. As you know, good & bad days, Daily time on the exercise bike, stretching all keep me moving. There are some who do not understand meeting for dinner in the evening is difficult. My husband has been a saint in understanding. God’s speed to you in managing your AS.

    • Bobbie, I totally know what you mean! I have AS and i have to take pain meds just to sit and watch a movie (though laying on my stomach helps). But I try to remember that a disease that requires you to move is a strange blessing in disguise sometimes. It’s caused me to keep moving and really change the way I approach my health. Best wishes to you! You’re not alone.

  5. I was dx with AS at 29. Also a severe immune deficiency, lymphoma, and 2 bouts of breast cancer. Now they say I am experiencing heart failure. There are no treatments for AS if you have or had any cancer. I totally understand the dibilitating pain you experience. Just keep fighting and praying, its all people like us know how to do…..mj

  6. Hi Sherry
    Amazing your description fits me to a tee. I list vision in both eyes before the eye doc said SOMETHING ELSE is going in in your body. I’ve been seeing Dr John Revielle university of Texas rheumatology. This is his specialty although ill never be pain free ice made adjustments in my life to tolerate the disease.
    Stay strong in mind and body You have too in order to live

  7. I was diagnosed 12 years ago with Pseudotumor Cerebri. I had migraines for most of my life but this was worse, I started losing my eyesight. That’s how I was diagnosed with that. Then a month ago I was diagnosed with an autoimmune disease called Sjogrens syndrome with fibromyalgia. It is in the same family as Lupus. Took them years to take me seriously about the fatigue and body aches I was experiencing. Went to one Rheumatologist who told me “you don’t have lupus so I can’t help you.” What? I could not believe a doctor would say that to me. Then I went to another Rheumatologist a couple months later and I feel 80% better than I did 6 months ago. They said this runs in my family so I am keeping a close eye on my daughter. I understand the frustration that you experienced and I thank you for sharing your story. Hope everything works out for the best for you.

  8. Hi Sherri. I am 31 and was recently diagnosed with AS. I have been dealing with pain and various related symptoms for more than ten years. It’s so encouraging to hear your story, because we are not alone. I was a runner and loved high intensity activities too. I’ve switched to swimming and yoga and lower intensity workouts, and now I love and enjoy these actitivites. Plus I feel great after.
    It’s difficult when you’re young and in immense pain, because people don’t understand what this disease does. All I can say is keep going, keep moving, and keep hoping. You have already tried to see the positives out of an negative diagnosis and that is amazing. I’ve tried the same. Life is tough, but we are tougher. Best wishes!

  9. Hi Sherri,

    Thanks for sharing your story. My diagnosis also came after I had several bouts of very severe iritis. My eye issues were coupled with sacroiliac pain, and pain at the base of my skull and ankles.

    I was going through fertility treatments a few years ago and my AS was terrible, crippling. Once I became pregnant, I was miraculously in remission. Now, 6 years later, my symptoms have returned. I have never regularly seen a rheumatologist but I’m thinking its time.

    Have you ever been tested for celiac? I feel like they often go together. My sister has celiac so I’m definitely going to ask to be tested.

    One of the most frustrating things for me is that I’m a runner, and whenever I feel joint pain it’s hard to tease out whether its AS pain or a pain from running. Typically my AS feels better after I run a bit, but running injuries get worse. Makes it tough!

    Good luck to you!

  10. I had similar battles with pain all the way through my 20’s & 30’s before i was diagnosed with A.S. in advance stage. It spread throughout by entire body and like you I was avid exercise machine. but that slacked off for a few years because the pain was to much until I found a fountain of youth from Beachbody. Let’s chat sometime I’d really enjoy sharing how each of us fights off the pain.

  11. You’ve just explained every symptom and problem I’ve been dealing with for 20+ years . I was diagnosed a little over a year ago cause it just got to a point where I could no longer sleep. I work in a Wyoming coal mine. So when it got to the point to where even pushing down a throttle pedal or trying to sleep was impossible it was time to go see a Dr. It does kinda scare me cause I don’t know how much damage has been done.

  12. Sherri,
    It was nice to hear your story. Your so right there’s not much information reg AS. I love how positive you are. It’s so reassuring. My daughter was diagnosed with AS two months ago. She’s 10 yrs old now but has been living with all the the symptoms since she was 7 yrs old. It was very heart breaking for us to get her diagnosis. But finally we got a dx after getting the run around with the podiatrist and the orthopedic. We just need to stay positive and guide her with a healthy diet and stay active, and continue with her Enbrel. So far it’s helping her. She’s been pain free since.
    Thank you for sharing your story.

  13. Thank you so much for sharing your story w AS. I have been diagnosed w psoriatic arthritis that is much the same. Do any of you have flare ups that cause your ribcage to swell up and awful pain in your fingers, toes and especially under the nails. I also have low back pain from scoliosis so I wonder if mine is really AS w awful migraine headaches. My fingers, toes, & ribcage pain is the worst. Oh and I have the eye irritation as well. Thanks for sharing your story. I was on humara injections but am changing to embrel. God bless you.

  14. Hi, great story and much like my own, especially regarding working out! How is the injectable meds going, i am on Embrel, and finding it wonderful. I can even do 3 crossfit work outs a week some weeks. I still get fatigued but constant movement balanced with rest is a must. it took a lot of trial and error to find a medication and activity balance, as most injectables are steroidal i have found some weight gain as a side effect, even more motivation to get to the gym 🙂

    Good luck

  15. My mom was diagnosed with AS several years ago. She was probably 65. I just tested positive for the hlab27 marker which is a genetic marker that I have read about 95% of people with AS have. My x-rays, according to my family practice doc, don’t show anything. In fact, he says they look great – better than most people your age. I am 46. However, I have a lot of the pain symptoms that are described here in your blog and on the internet. I also have pain similar to my mother’s. My doctor thinks I don’t need to take any further steps at this time, but I am thinking I should see a rheumatologist. My mom agrees. Thank you for taking the time and effort to put this site together. I really appreciate it. Reading others stories makes me feel not so alone and gives me hope.

    • Erika – You and I are in a similar boat. I am mid-40’s and learned I am HLA B27 positive a year and a half ago after going through testing for joint pain and swelling. It was as if a light went off that finally explained the connection between back aches, hip pain, and tummy issues I’ve experienced at various times through my teen and adult years. In AS, all are connected through the gut. My MRI is clear in the SI joint , like you. Between the symptoms and the HLA B27, I have pre-AS or a variant of spondyloarthropathy. I have painful flare ups where my whole body just hurts (hips, shoulders, hands) . NSAIDs make a huge difference but can cause more problems down the road with the gut issue so I’m trying to avoid medications as long as possible. I’ve found a low or no starch diet makes a huge difference. Look up Klebsiella and startch and AS for more information. My goal is to manage this pre-AS condition so it doesn’t become a full-blown AS, or even if it does, it happens later in life. Visit kickas dot org and get more information from the forum on diet and AS. The doctor’s advice that you do nothing at this point just means you’re not bad enough to get a prescription, but it has nothing to do with preventative health and good maintenance! Good luck. Lisa

  16. I really appreciate you sharing your story! Tears were streaming down my face as a read this because I finally found a young person’s story about dealing with AS that I can relate to. I was diagnosed 2 years ago when I was 20 and have battled depression, intense crippling pain, and coming to terms with the fact that I will no longer be able to run like I used to. I used to run hard for miles and work my body hard doing high intensity workouts, just like you mentioned. Not being able to workout like I used to is the most devastating part of AS that I still get really angry and frustrated with but I try my hardest to stay positive. I would love to read more blog posts about how you deal with AS and also interested to know if there’s a support group of any kind for young people with AS. Maybe we could start one!

    Thanks again for this post it was just what I needed to read to feel like someone out there understands what it’s like having AS at such a young age.

    🙂 Daniela

  17. Hi Sherri, I really appreciate your story. Except for eye problems, it was like readfing my own! I also am fighing AS with diet, medication and workouts. Bravo to you! I hope you are doing well and would love to hear how you are doing. I have AS and they did not figure this out until I was in my early 40’s. I am kicking AS!

    Thank you for sharing your inspiration! I love it!

    HUGS
    Cheryl

  18. Its nice for someone to let people know about AS. I’m 18 and have been recently diagnosed with AS. I also have other autoimmune disease such as Lupus and Rheumatoid arthritis and inflammation in the bowel. for the past 5 years its been a roller coaster. I take simponi injections which should help with the pain associated with AS and the arthritis around my body. Also have chiro and acupuncture. I have had 4 injections and i am suffering with bad back nerve pain that shoots down my bum and legs. Does anyone else suffer from this? i am hoping its nothing serious like nerve damage which means an operation.

    I cannot get onto of it. it is coming down on me like a tone of bricks and only being 18 its affected my life dramatically. I am hoping a change of medication is on its way and hope it settles so i can manage to sit or stand comfortably.

    would love some information if someone has over come this.

  19. Sherri, I love your entry. Since I watched my dad have his spine turn to stone As a child, I did research on my own. My dad also has crohns. My back issues started a few years ago, but ive had bowel pain since as far back as I can remember, so yeah, onset probably was when I was in my teens. When I eent to the e.r because I couldn’t breathe they diagnose d bronchitis and wrote me a script for antibiotics and steroids. The steroids made me feel like a million bucks. I finally am going to the doctor. Even though its always been in my mind, I didn’t want to believe I havr it. My gp is leaning towards yes. So while playing rodeo with insurance…I will be getting blood and xrays done. I know I have a hard road ahead, but I believe I will be better being active and working with my doctor. I seen what ignoring docs orders does as a kid. Thanks for getting the info out there. I just stumbled upon the diet thing And it sounds good also. im freaked but I have always felt better when I ride my bike or walk…so theres that. Im going to keep this b$@@h at bay because im the tougher b@$&h!

  20. Hi,
    I have been living with AS for about 7 years now and came across the no starch AS diet. I have been on this diet for 4 years and it has absolutely changed my life. I’m virtually pain free as long as I eat zero starch. I was so desperate for pain relief and this diet seemed like a better alternative to being on medication for the rest of my life. I’m now 37 and living a normal life. My story sounds so similar to yours. It took several years for a diagnosis after seeing numerous doctors. This diet works!! Try it- what have you got to lose.

  21. I know this is an old post but I’m happy you told your story. I was diagnosed with AS 15 years ago today! I’m currently having a Uveitis flare as well, even though I’m on Humira, Methotrexate and had 2 steroid pellets ( Ozurdex) injected into my eye I still flare. I’ve found great support on Social media, especially Instagram. I’ve connected with people from all over the world, I’ve helped 2 women with AS who were told their red eye was conjunctivitis when it was really Uveitis. To all of you with AS, never stop fighting and reach out to others newly diagnosed, you’ll help them more than you’ll ever know. 💙

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