A.S. Face 2177: Patrick O’Neill

A.S. Face 2177: Patrick O’Neill



Hey there I’m Patrick and i have AS. I was one of the lucky ones that got diagnosed in less than a year. I have been fighting AS since October of 2012 and I’m still fighting. When the pain first came I was told it was sciatica. Then it started to get worse I was unable to walk, when I coughed pain would shoot up and down my spine. It was the darkest days of my life. But I pushed through it like a champ. I was seeing my primary care at the time. He was doing every test out there till we got to the MRI of my lower back and hips. I still remember the day I got the call as I walking into work. I remember thinking my life was over the second I got off the phone. Needless to say I never made it into work that day since I was so distraught. Within a week I saw my first rheumatologist in Nashville TN at Vanderbilt. But within 2 months she shut down her practice and moved out of state. I was devastated but determined to fight to my last breath. I found a new doctor at ST. Thomas. Dr. Lyons in my mind is my lifesaver. Even though I have tried every biologic, I take humira ATM and barely take pain pills, I keep fighting AS every day. But with the use of modern medicine comes the side effects. On December 19th 2018 I was diagnosed with AVN of my right hip from steroid use. Which meant the end of my steroid use to fight AS. Within 3 weeks I had a core decompression on the hip. This was my second surgery of the year and I knew I had to keep fighting. Luckily the core decompression put the AVN on hold and I’m now comfortably walking around with hardly any pain. 6 months later I’m active and will not let anything bring me down. The biggest thing about this disease is you can not do it alone. Having the support will make sure you keep fighting AS.

A.S. Face 2121: Summer Canady

A.S. Face 2121: Summer Canady



Hello, my name is Summer Canady. My journey has been a long and challenging one, but it’s also provided me with so many blessings. Helping people is all I have done, from a young age I was taking care of someone. I worked primarily in the medical field in a variety of areas, but mostly caring for disabled individuals, from intellectual to physical. It was a very rewarding job, that is until I started struggling to do my job.

As many know, it’s often a lengthy road reaching diagnosis. I started having symptoms at 16, I am now 37 and was diagnosed in 2016, the early part of the year. By mid year I was on biologics and thought suddenly my life was being given back to me. Boy, was I wrong. It was actually just the calm before the storm. After treatment began I had days 100% pain free. I had energy, I was sleeping all night 6 hours for the first time in 10 years. I was motivated and proud to finally be ahead of this ugly monster. To finally be acknowledged after so long of being told I was crazy.

I was an avid hiker, competed in 5ks and held a very good job. Life couldn’t have been better. Then my teenage children’s father was dying. It was like a tornado that just spawned storm after storm. He had no one but his mother and she was in shape to take care of him. I brought him home and provided his end of life care. Thankfully treatment and a good job gave me that ability. It was after this, stress was overloaded, and of course it triggered a flare in symptoms. However, that was going to become the most challenging battle I’d ever face.

I lost my job, my daughter spiraled into trouble, my relationship ended, I had family walk away from me, and my health began to decline. My AS was no longer controlled, I quickly started losing range of motion, but it was far more than just that. As the AS raged on in my body, it started causing inflammation in my lungs and my liver. It even started effecting my heart. It was a difficult journey, and far from over. I have rapidly declining lung issues, fibrosis in my liver and am waiting to hear news of what’s going on with my heart. I’m no longer able to work, and just getting dressed is a challenge.

I’m not giving up though, and that’s how it’s brought blessings into my life. I knew nothing about AS, and had millions of questions. I started looking for answers. That led me to the Spondylitis Association of America, I started the first support group in my state, Tennessee. I have met amazing people. I quickly realized how many people are so much worse off than me. I wanted to help, to do more. My dream of helping others is slowly coming to light. Giving Spoons is a project I’m trying to get started that will offer that help. In the form of care packages, assistance with financial needs, providing a listening ear, connecting people in a deeper and more personal way. I have a big dream, but I’ll get there.

I have had the great pleasure of participating in many things that will help change the future for AS. I started blogging and it’s such a healing process, I do awareness and advocacy projects of all kinds, I have helped with SAA projects, participated in surveys to update disease diagnosis and progression and I have two upcoming patient panels I’ll be involved in, I recently became a board member for Walk AS One, All of this has given me far more than I ever dreamed off. I’m incredibly blessed and it helps me get through my difficult days.

Currently I do awareness and advocacy via social media. I can be reached in any of my groups Giving Spoons or Bristol, TN Spondylitis group kick some AS or my page Giving Spoons to Kick some AS. I am also on Twitter, Instagram and Snapchat under Kick Some AS. My blog site is k.kicksomeas.com and I also use YouTube and finally my email kicksomeas@gmail.com

A.S. Face 2098: Ronda

A.S. Face 2098: Ronda



My name is Ronda. I’m newly diagnosed at 50yo in 2019. I’ve had symptoms for at least 20 years and no one seemed to listen and would write off problems as just being depressed and overweight. It took a bout with uveitis in November 2018 to finally get to a diagnosis this past January. I’m HLA-B27 negative and labs for inflammation are within normal range. Past damage is done and I hope disease management will be successful and prevent further progression.

A.S. Face 2075: Annie Derrick

A.S. Face 2075: Annie Derrick



I was diagnosed with AS about 2 years ago, age 32. Also, have fibromyalgia.

A.S. Face 2051: Marishia Yvette Gilbert

A.S. Face 2051:  Marishia Yvette Gilbert

My message to other “faces” is that we must never lose hope, faith, and courage as we take one moment, day, week, month, and year at a time.

A.S. Face 1992: Rachelle Moore

A.S. Face 1992: Rachelle Moore

A.S. Face 1972: Amanda Godwin

A.S. Face 1972: Amanda Godwin



My name is Amanda Godwin, 33 Mom of 3 and I’ve had AS for 17 years

A.S. Face 1879: Brenda Bowling

A.S. Face 1879: Brenda Bowling

A.S. Face 1789: Susan Carson Hill

A.S. Face 1789: Susan Carson Hill




I was misdiagnosed with MS. Took 7 years to get this diagnosis. I started having issues as a child. As a teenager, I started having pain along my right hip bone. I had bone spurs develop in my feet. I walked on my toes since infancy. Can’t do that anymore. My childhood Dr’s begged my parents to put leg braces on me. They refused. I don’t know the reason. Years of pain and fatigue, and I couldn’t hold jobs for long. I had 2 girls to raise by myself. Long story. Their dad was a deadbeat. Anyway, I spent long hours on my feet, working. I would come home and literally be too tired to do anything. I thought this was normal! I have 4 bulging discs. Two are herniated with a synovial cyst in my lower back. Bone spurs along my spine, and osteoarthritis in my right hip and both hands. I also have a host of other autoimmune disorders. Diabetes Type 2, hypothyroidism, and possibly lupus. They are still trying to figure it all out.

In 2007, I could not stand for any length of time. Had a work-related injury, and was no longer able to work.

Tennessee, United States of America

A.S. Face 1768: John “JAY” Brown

A.S. Face 1768: John “JAY” Brown

John “JAY” Brown

No gene marker, but was diagnosed 3 years ago.  explained a lot.  Have had A.S. for approximately 50 years before diagnosis.

A.S. Face 1641: Shannon

A.S. Face 1641: Shannon

A.S. Face 1567: Jewel Baird

A.S. Face 1567: Jewel Baird

My name is Jewel Baird.  I am 50 years old and I live in Andersonville, TN…and it has been a rough year.  I think I am finally “feeling ” my age.  I was diagnosed with A.S. in 2006…after a seemingly minor car accident in 2002 left me with a long list of pains and unexplained symptoms from nausea and dizziness to neck and back pain that just seemed to get worse no matter the treatment.   I lost count of the doctors I saw and the times I was told that IF I was overweight. ..they would tell me to lose weight. ..until an orthopedic doctor sent me to a rheumatologist who solved the mystery in about a 10 minute conversation (verified, of course, by examination, bloodwork, and the x-rays of my SI Joints, which had shown inflammation for about 4 years).  It has been a long, painful, frustrating journey.   Thanks be to God I now have peace.  There is also a sense of community in knowing that others are suffering from the same affliction… I guess…I know that sounds bad…and I am sorry for each person who feels this pain…but I also know that unexplainable pain tortured my brain.  I thought I was going crazy.  I was the 1st in my family to be diagnosed and had never heard of Ankylosing Spondylitis before 2006, although my neck had been hurting for AT LEAST 4 years before the accident.   My doctor said it was my desk job.  Thank goodness I finally changed doctors.

Tennessee, United States of America

A.S. Face 1442: Stacy Hoffman

A.S. Face 1442: Stacy Hoffman

Nashville, Tennessee, United States of America
 

A.S. Face 1407: Rita

A.S. Face 1407: Rita

I’m Rita.  I am a wife, mother & one of many people living with AS. My symptoms started 2 months after I had my first (and only) baby girl in July 2012. Extreme lower back pain, fatigue, & morning stiffness. Assuming all of this was from being a first time mom, lack of sleep & taking care of a newborn 24/7, I pushed through the symptoms. Not for long. I knew something wasn’t right as my symptoms never got any better & I woke up every morning in tears. The pain in my back & hips was unbearable. I had to use a cane to get around for a couple of months. Then it progressed to my  right knee, both wrists, fingers & toes. Many days spent in agonizing pain taking care of my baby girl on the floor. Diaper changes, playtime, feedings, I couldn’t pick her up. I was terrified every day that I would do something wrong & not be able to care for her. Worst mom ever, right? My amazing husband had to help me get up & down, in & out of the shower, get dressed, shave my legs, you name it, I was useless. After seeing my family practitioner in November 2012, she referred me to a hematologist. My blood work was all over the place. Severe anemia,increased WBC, low platelets, SED rate through the roof &  a CRP of 10! The hematologist told me I was anemic & had inflammation (wow, really?) I was then referred to a Rheumatologist. The first doctor I tried to get an appointment with, didn’t have any openings for 6 months. After crying a river in the lobby, I left feeling totally defeated. I wasn’t sure how much longer I could live in the state I was in. I felt like a horrible mom &  burden of a wife.
Thankfully, my husband talked with a coworker who has Psoriatic Arthritis. She referred us to her rheumatologist. My husband called & told me he had talked to the office & they scheduled me for my 1st appointment on January 21st. I had 4 weeks until that glorious day, I could do 4 more weeks! Finally a light at the end of the tunnel!
January 21st, the best day. After a brief medical history, the rheumatologist diagnosed me with Psoriatic Arthritis. Never had psoriasis before, but I was in his hands. At least he told me something. He mentioned AS to me & I had no clue what he was talking about. He was certain my blood work would show that I was HLA-B27 positive. After my results a week later, he was right. I started Sulfasalazine, doxycycline & thyroid meds, as I also had Hashimoto’s Thyroiditis. A few months went by & my CRP was still high & I wasn’t much better. I started methotrexate injections & improved. In May, at my daughters first birthday party, I was barely walking, again. The pain was coming back, random joints were starting to swell, I got injections in my toes, fingers, knees, then I started Humira in May 2013. I know it’s crazy, but I felt relief after my first dose. Maybe it was all in my head, but I was very hopeful. I have been on Humira ever since. I am now, living with AS, not suffering from it. Sure, something hurts every single day. But, it is manageable. I have more energy, and am fully independent again. I move slow sometimes, especially for my rambunctious 2 year old, but I’m no longer the horrible mom, the mom that counted down minutes to nap time, the mom that would turn down play dates almost every time we were invited. Thankful for my amazing, supportive husband, understanding family & friends, a great doctor & prayers that have gotten me this far. Here’s to Humira and flares that are few and far between. Maybe one day there will be a cure for AS, but until that day comes,  I plan on living & loving life, even with AS.
Seymour, Tennessee, United States of America

A.S. Face 1380: Leslie Harris

A.S. Face 1380: Leslie Harris

I am a 43 year old female. I started having leg pain about 6 years ago. Had 1st MRI that showed 2 bulging disc, sent to Orthopedic Surgeon. No reason for surgery yet. Went through Physical Therapy & 2 epidurals. No relief. Year later, another MRI. Slipped disc. Time for lumbar fusion after 2 more epidurals. I told my Ortho that my pain was in my SI joints, or more like my pain was in both butt cheeks and ran down both legs to my feet. Not your typical sciatic nerve pain that most people complain about.  He said he understood. 6 months after my surgery pain is back! Ortho’s words, “Guess it didn’t work”! Great! And this is after I ended up back in surgery 1 month to the day of original surgery, with staph infection in surgical site. So!  2-3 years later, pain is worse in my legs, butt cheeks and feet. I am miserable. Then I start having joint pain. L hand middle finger knuckle pain that radiates to elbow. So, my Family Dr. does arthritis work up. RA positive, ESR normal, Aldolase high, C-RP normal. Rhemy appt. made. 6 months out! Put on Plaquenil & prednisone, Pain increasing to both elbows, knees, ankles and feet. Then muscle weakness and costochondritis pain. Family dr starts me on MTX because appt so far out. Back and leg pain getting worse. She told me it was the RA that was causing my pain in my back and legs. So I do what everyone is told not to do. I googled the heck out of RA and leg pain. Oh, and I forgot to mention I am a lab and x-ray tech. So I see a lot and know a lot of patients with all kinds of with RA and fibro and all kinds of different arthritis’ but no one had the back & leg pain that I have. Ok so back to my story. I came across RA and back pain link for AS!!! Holy Freaking Crap! My symptoms! Pain in butt cheeks, joint pain, can be brought on by bacterial infection in the gastrointestines ( I had C diff for like 6 months about 6 years ago, how ironic) an infection from antibiotics. Have had diarrhea ever since. And major fatigue! OMG! I have never slept so much in my entire life! I have always worked 2 jobs. And would spend my 1 of my 4 days off a month of work cleaning. Well, not anymore. I spend my weekends sleeping!  Ok so now for the HLB 27 test. I ordered it & did it! Guess what?? Positive! Talk about major relief! I am not crazy!! I am not a hypochondriac!! I am not a drug abuser!!
So, I talk to my fam dr., she is relieved for me and tells me how pts get awesome results from Embrel & Humria etc.. So I am excited about going to Rhemy. Get there, 1st thing I find out after waiting 6 months to see him. He doesn’t take my insurance! Well Hell! I have waited too long and hurt too bad to wait another 6 months to get into another dr. So i see him. 2nd he tells me, There is no way I can have both RA and AS. In his 20 yrs he has never had anyone with both. So he tells me to have Anti CCP abs checked and if they are neg, then we will do Mri to see what kind of damage is done to my SI joints. CCP neg, Mri neg!! Holy Hell! Really?? So he calls and takes me off Plaquenil and MTX. Joints are back to hurting worse within 2 weeks. So he puts me back on MTX. Then time for my next appt. He ask how it’s going? Well, not real good. Still hurting.  Everyday it’s a new place. Elbows one day, knees the next, elbows and knees the next. Back and legs the next! So, then he says, (get this) It’s probably RA & Spondylitis! ( Really?? duh..) RA must just be neg because of MTX. Good Lawd he is killing me! lol Let’s start embrel. Well, I have an appt with new Rhemy in 3 months that does take my insurance. If I get the dx and meds from him (not being on my ins) my insurance will not recognize dx or meds. So technically I have not been dx yet. But I know it’s what I have. So now the waiting game again. But I feel I am so close! I just hope and pray this new Rhemy knows at least a little more about AS.
Started with new Rhemy July 31st 2014. I love her! She did more test. I have had 3 positive RAs & 3 negative RAs. She says I don’t have RA because all of my inflammation markers are neg. But I have really bad joint pain. Which she said is more evidence of A.S.. So she started my on MTX 10 pills weekly & she increased my predisone to 15 mg dly. Still have a lot of joint pain, back pain and leg pain. She then started me on Humeria. WOO HOO! I am so excited! Sad, I know! But I have such a sense of relief. I have a chance of feeling better. And I actually have been feeling better. UNTIL… I got an abscessed tooth and I am on antibiotics until root canal is done. Which has been about a month now and I have another month to go. I didn’t realize how better I had been feeling until I haven’t been able to take MTX or Humeria. All I want is to feel better again. But I know I will. I just have to be patient and take care of myself. Stress is also a factor in my well being.
I have to consider my health now. I have honestly gotten such a renewed sense of life and this disease from other’s stories. I know I could be a lot worse and I am not giving up!  And let me tell you, anyone who complains about back pain or joint pain. I make them demand to be tested! I don’t know of anyone else in my family that has AS, but there are a few who have back problems. I have them told them to get tested.
So I guess you can add me to the list of women with AS! It’s not a man’s disease anymore!
NEW AS WARRIOR!
Leslie Harris

A.S. Face 1298: Patty Girdler

A.S. Face 1298: Patty Girdler

Hi, my name is Patty Girdler. I was diagnosed with Crohns Disease in 1996. I have had a lot of flare-ups over the years and been on prednisone more than I can count. I had a lot more extraintestinal problems than abdominal problems. I have had low back pain for years and would mention it to different Drs. In the early 2000′s, my internist did one x-ray on my low back but did not see anything.

In 2011, I was diagnosed with Thoracic Outlet Syndrome. I had had limited circulation in my right arm. I had a lot of weakness, cold hands, numbness, tingling…It was very difficult to get to the right Dr. to get diagnosed. Finally, ended up at a vascular surgeon who said my only option was to do vascular bypass through my right shoulder. Long recovery….Then, more than likely, from auto-immune issues, I ended up with an extreme case of frozen shoulder! After a lot of PT, my dr. said it is not going to get any better and said all we can do is have another surgery on that shoulder. After lots more PT, I recovered from that. A year later, I was diagnosed with TOS in my left shoulder. No surgery is scheduled at this point.

Fast Forward a few months, I started going to a new rheumatologist and he decided to do a lot of tests just to see where we stood. I do have osteoarthritis and enteropathic arthritis, but he came back with a new diagnosis…Ankylosing Spondylitis. I feel I have had it for years. No rheumy has ever really paid attention to my back pain. We have now put together that the TOS diagnosis is more than likely a result of the AS. My shoulders have started turning in causing my rib to pinch the artery. (The surgeon also removed my first rib). I have been told that my thoracic does not even move when I breathe. It is really hard to take a deep breath. I just started treatment with my first dose of Humira. I pray all goes well! I was highly allergic to Remicade that I had taken for my Crohns several years ago.

I am so blessed to have a wonderful support system in my family and friends. I try very hard to keep a sense of humor and stay positive! I do know that God gives me strength to have an optimistic attitude towards my health. I have been very thankful for this group. I have understood the struggles that others in this group have shared. I have learned so much from everyone and have gotten some great advice from some of the stories I read.

Tennessee, United States of America

A.S. Face 1267: Michelle Berish Salas

A.S. Face 1267: Michelle Berish Salas

Hi my name is Michelle and I have A.S. I’ve had symptoms of A.S. For 4 years, I’ve been to orthopedic specialist and chiropractors they kept blowing me off like it was nothing. My husband now has had to dress me help me shower, watch me fall over, climb on walls just to make it to the bathroom. It was so painful at times that I just wanted to give in stay on the couch. I’ve always been active my family are bowlers. I’ve struggled over and over again. Some how I found away to keep going. My sister came up for thanksgiving. That was truly a thanksgiving to give thankful for. She explained to me A.S.(we had never met before) and that she had the same thing! But she wasn’t positive for the HB-127. She begged me to go get checked. Finally I did and got the test results back 3 weeks which I was positive :(right before I got married. (March 8, 2014) this is a hard diagnosis for anyone much less right before you get married. They have put me on humria now and I’m now working out 5 days a week. The shots are painful but all and all everything is getting better. Somehow some way I will find away to keep going, keep fighting for what you want! You are the most powerful person in your life. Only you can make a change. Little by little my world is coming together and so will yours!
Thanks for all your support together we will find away.
Michelle

A.S. Face 1262: Libby Tucker

A.S. Face 1262: Libby Tucker

My name is Libby Tucker and I began having symptoms when I was 21 years old. My right knee filled with fluid and after the doctors drained it, it kept coming back until I finally had surgery. For the next several years, I would be on methotrexate, vioxx, Celebrex and prednisone. I still never had a true diagnosis. I stopped having symptoms all together and got off all meds. For the next 5 years, I boastfully claimed God had healed me of my arthritis. In 2012, it came back with a vengeance. I was living in a different city then and was seeing a new doctor who then diagnosed me with Ankylosing Spondylitis. Before getting back on meds, I went through a period where I wasn’t sure if I could even walk from day to day. I hid it very well and still do. Most people don’t know. I am currently taking humira and mobic and doing very well. My grandfather had one of the worst cases of AS his doctor had ever seen. By time of his death in 2007, he was so hunched over, he only stood about 5 feet tall.
My biggest thing is seeing the positive. The last time I was at my doctor, I asked him , “do you think I’ll have to take the Humira the rest of my life?” And he said ‘yes’. My first thought was, ‘Thank God that we have the medicine that gives me my life back. A medicine that grandfather wasn’t able to have’. I am so grateful everyday. This disease reminds me of how important life is and reminds me of my grandpa. Life is good, God is great. Be thankful every day.

A.S. Face 1013: David Perry

A.S. Face 1013: David Perry

This is in remembrance of my uncle David Perry. I have 4 uncles and I was always the closest with “uncle Dave.” I know now years later after his death why we were so connected. I (face 268) was not diagnosed until after his death of a massive heart attack. He was only in his early 50s. I remember family speaking of his symptoms starting in his early 20s. He had an accident in a factory he was working in and hurt his neck. He may have broken it but I can’t definitely say that is true for certain. However I do know it was injured and that’s when it all seemed to start. He was in agony through most of my memories of him as a child. None of the doctors knew what was going on with him. I remember my aunt (her husband) telling me after my diagnosis that there were times he would come home and would be so stiff that she would have to move his legs and get him out of the car. So many times we couldn’t even touch him anywhere because of his pain. He never stopped going for fear he would not be able to get going again.  He would sleep on the couch and have 6 to 7 couch pillows to support his body. He went thru countless hip and shoulder replacements, tremendous pain and medical issues our family would call spells. These spells consisted of him turning very pale and then passing out. Ambulance would always be called as I child I don’t know what the paramedics done for him to wake him from these spells but they were bet scary. They went to doctor after doctor, specialist after specialists with no luck. No one had a clue. After he was fused out from head to toe, his countless surgeries he finally received the diagnosis of ankylosing spondylitis. At that point there was nothing they could do for him but try to keep him out of the devastating pain. He was on so many pain medications and they told him that if they would have caught it sooner they could have helped him. They say the pain stops after fusion but according to the way he was this wasn’t true for him. I wish everyday that he was still here because I have so many questions for him and would tell him I understand. His body suffered one of the most severe cases. His left leg became shorter than the right one and I’m not sure how much height he lost. He is my hero because he endured so much and I never recall hearing him complain. He had been with his wife since they were teenagers or maybe even younger than that. She was there for him thru it all and I know at times it was difficult as he would become quite harsh with her. But I think we all get in those places because the pain gets us to a place of anger, no escape, no answers….just pain. Through the years it mangled, twisted and tortured his body. Without the support of his wife I don’t think he would have made it as long as he did. I can remember on all mothers days, christmases or any holiday that was gift giving along with birthdays it was so important to buy such beautiful gifts for his mother and wife. Beautiful water fountains, wooden clocks or anything that held a special place in their heart. He had the biggest heart even thru his  that I know now was due to pain. My uncle was my hero and I’m so regretful that I didn’t realize it til after his death. If I could just have one last conversation with him. I love you Dave and you are so missed by your loved ones. Til that day we meet again….
In loving memory of David Perry
With Love Jennifer Curtis face 268

A.S. Face 0969: Brooke Wilson

A.S. Face 0969: Brooke Wilson

My name is Brooke and I’m 33 years old. I was diagnosed with Ankylosing Spondylitis about 5 years after the first major onset of symptoms, which was during the pregnancy of my daughter. During pregnancy, my OB said it was just round ligament pain causing my issues… the fact I could barely walk and was told to essentially be on bed rest when at all possible due to the pain. I ended up with preeclamsia and she was delivered 5 wks early.  Thankfully, she was healthy and has been to this day.
After 6 months my pain still hadn’t gotten better. I was sent to a pelvic pain specialist who gave me Flexeril and also sent me to a physio-therapist. The exercises there didn’t really help, but the flexeril and the TENS unit they gave me did slightly. I pretty much continued with my new normal. I could get things done but my tail bone area was constantly tender to the touch and would go numb at times.  Hips sore each morning after sleeping.
I continued this way for from 2009-2013. I then had what I now know is a flair. In March 2013 I crumbled and began going downhill fast. Pain started in my chest (sternum really) and I went to the family dr. I was diagnosed with something similar to pleurisy (can’t remember the name).  I was given predisone pack and said to come back in 5 days. I called in 4 because I was worse… now tender to touch my collarbone. I came in and was told this can happen but they ordered a chest x-ray just in case of anything more. Nothing showed up so they upped the prednisone and was told to come back in about 10 days.
I continued downhill to the point of my arms feeling on fire and tingling, my legs would go numb one at a time… sometimes from the knee down, sometimes higher up. Most of the time my chest and collarbone you just couldn’t touch. During this entire time I wasn’t saying anything about my tailbone or middle back because that had all become so common to me but it had also gotten worse to touch. Getting dressed was something awful!
This downward spiral actually took place in about 2 months time. Blood test were done and didn’t show anything. My dr thought to send me to a rheumatologist but the few in the city all had 3-4 month waiting times at minimum. After a few calls and my chart sent, I was able to get an appointment in a month. That month was agony. That appt didn’t shed much light and the rheumatologist actually admitted that I was a mystery to him.  He started me on sulfasalazine just to see what it did, maybe it would help.  He also drew massive amounts of blood for various new tests… all came back fine.
I went back a month later and I had very small (if any) improvement. He was still stumped. I was sent to see a friend of his, the head of rheumatology at a University 4 hours away. After a few minutes with me, seeing the intense sensitively of my upper chest and the odd sensitivity of my right toe (still weird to me) he knew it was AS.  Also, said I had fibromyalgia. Through him I now know I’m positive for HLA-B27.
I came back home with this diagnosis and my rheumatologist continued to be somewhat skeptical, yet came up with a treatment plan that helped with symptoms. Today I’m on a variety of meds, which have to be changed up time to time, and have started weekly Humira. I’m not in a crumpled heap that I was even just a few months ago, so that is awesome!
I continue to have flairs every few months, but I have more good days than bad which allows for more good time with my daughter and husband. Without these two by my side I’m not sure what I would have done. My husband’s support, my daughter’s smile and my faith have sustained me. God never gives us more than we can handle. I’ve always believed this and will continue to do so, even with AS.
Tennessee, United States of America