RozfromOz

@rmg8tc
I look for daily inspiration to cope with my chronic pain and other symptoms.

Things People Don’t Realize You’re Doing Because You Pain Is Constant

Living with constant pain can be extremely frustrating. When you don’t feel comfortable, you might develop some habits designed to make things more manageable. You might have back pain that makes it hard to sit in certain chairs. You could potentially have widespread pain that makes it difficult to stay still. Your pain could make you seem angry and irritable. Whatever it is you might be doing, the people in your life just might not get it. Chronic pain is usually invisible to others so they can’t “see” why you need to use a certain chair, don’t want to go to places with cramped seating options or spend long periods of time in the cold, which exacerbates your pain. You may be worried others are judging you or feel self-conscious about your actions. But you’re not alone in your chronic pain “habits.” In order to learn more about the tendencies people have due to constantly being in pain, we asked our Mighty community what they do to help manage. We wanted to learn what they feel first-hand. If you live in constant pain and can relate, share this list with the people in your life so they can have a better understanding of what you’re going through. And if you’re struggling with coping with your chronic pain, talk to someone you trust. Here’s what our community shared with us: 1. You can’t sit still. “When I sit, I rock back and forth. It annoys a lot of people and I was asked many times if I’m autistic. But it helps distract from the pain and the soft constant movement helps.” — Melanie C. “I’m constantly finding ways to move my limbs and muscles (even when sitting there talking to you) in an attempt to stretch out some of the pain that makes it hard to move those areas. I can find a way to stretch just about any muscle in the body. I have also hurt myself at times stretching too far or in too awkward of a position. But sitting still without stretching a spot that is nagging badly is hard sometimes.” — Teresa H. “I constantly fidget in my seat because I’m trying to find the most comfortable position. That’s difficult to do when most of your pain generates from your SI joint/hip region and inactivity causes even more pain.” — Melissa C. 2. You pretend you’re fine even though you’re not. “I smile a lot. Like, most of the time, if I leave my house, that is. Why? If I don’t look like something’s bothering me, then people don’t ask me what’s wrong. As long as people aren’t constantly asking me what’s wrong, since it’s a long list of things that make me feel regularly lousy, it’s easier to fake it through my day and not completely lose my shit because I feel so terrible.” – Erin P. “I say I’m fine and smile even when I want to lay down and cry.” – @burdle09 3. You push people away. “I push people away (unintentionally) and at the same time, I want them to remain my friend or spouse. It’s a constant mental battle. It seems to be more of a protection mechanism for yourself and also for them, but deep down, you just want to be there for them too.” – Rachel A. 4. You don’t sleep as often as you should. “Refusing sleep because it is too much pain laying down, even when I am not in much pain. The thought of possible pain makes me not lay down to sleep.” – Madi N. “[I used to] sleep a lot. It used to be the only thing that brought me relief, but now, even lying in bed until I fall asleep is painful.” – Allison M. 5. You avoid socializing. “Not going anywhere, not working and not socializing with people because I can’t focus on having a conversation with anyone when my pain is out of control.” – Cassie K. “I go AWOL with friends and family, trying to dodge phone calls (responding by SMS), invites or sudden appearances of people at my front door.” – Min L. 6. You choose what you wear carefully. “Deciding what to wear based on how stable I am feeling, how much pain I am in and what kind support my ankles need. If I have to wear my support sneakers, I usually wear pants or jeans. If I am having a bad pain day, a skirt and flowy top may just be easier to get on in the morning.” – @emjaydraonfly “I can’t wear pretty bras or panties anymore. The pressure they create can cause pain above my rib cage and around my waist for days. I have to wear ‘granny panties’ and wireless bras. I miss feeling sexy.” – @AmateurNerd 7. You talk a lot. “I talk a lot and faster. It seems like I am excited and feeling good, but again trying to avoid focusing on the pain.” – Liz B. 8. You hold onto tension. “I clench my teeth/jaw all the time in pain and in all these years, only one person has noticed this. During the last two years, I have broken and lost five teeth, but it was ingrained in me as a child to ‘go out there with a smile no matter what’ that I still do.” – Geraldine C. 9. You don’t drink often. “Not drinking. Everywhere I go, people want wine! I barely drink because of meds and because of how it will make me feel. I always feel left out or people think I’m boring or I have to explain that I’m on medication. I hate making excuses for not loving wine as much as everyone else.” – Tracy G. 10. You scope out a place before going there. “My back only lets me sit in certain types of chairs, so I will spend up to 30 minutes looking at pictures of different restaurants and coffee shops before picking one. [I do it] to weigh my odds on if I can sit without pain.” – Katie M. 11. You shower a day ahead of time before going somewhere. “I shower a day ahead of appointments because I can’t do both.” – @toria1876 “I have to shower the day before an appointment because it hurts and wears me out. That’s my ‘thing’ for the day. I expended all my effort in taking a shower.” – Sonya H. “Taking a shower the day before I’m going anywhere. I can’t do both in one day.” – @my4wheels 12. You zone out. “Sometimes I just sit and ‘zone out’ and stare off into space. Be it intentional or not, I think it’s my way of taking a break from myself and the pain. It’s a way to ignore everything for just a little while, until someone calls me back into myself.” – Molly D. “Sometimes I stare into space because pain makes it hard to focus.” – Abbi H. “I actively force myself to focus on what people are saying to stay engaged. Often, I ask people questions because if they are talking, that’s less effort for me. Stringing coherent sentences together can be a lot when you’re in pain.” – @chaostheory 13. You say ‘no’ more often. “I say no to people. I’m actually a people pleaser. I want to do everything I can to make others’ lives easier and better. Recently, over the past year, I’ve started saying no to people and telling the ones who can’t accept my limits to hit the road. I’ve recently developed MPS and my limits have changed again. Those who understand me putting my foot down can stick around as long as they like.” – Shayla F. 14. You have ‘resting pain face.’ “Sometimes I look miserable or annoyed when really it’s because I am in a lot of pain and I am not always able to hide it.” – Claire S. 15. You make alternative plans. “I am constantly making contingency plans just in case I’m in too much pain for the things I have to do. If I’m in a lot of pain, I leave earlier to get my kids from school so I can park closer. I spend all day alternating pain treatments while still doing chores and caring for my kids.” – Rebecca A. 16. You become angry easily. “[I have] chronic anger issues. Even small things irritate a lot when you have constant pain in different areas every day. But people won’t understand the real thing [about] what’s going on inside us as we look normal on the outside.” – Devi R. “[I become] snippy or short. When I’m in pain it’s all I can focus on and I’m short and irritable with friends, family and coworkers. I feel terrible afterwards.” – Stephanie W. If you are struggling emotionally with your chronic pain, please reach out to someone you trust for support. Know you’re not alone. You can also post on The Mighty using the hashtag #CheckInWithMe to give and get support from other people in similar situations and share your own experience. To learn more about constant pain, check out these Mighty articles: 27 Things Chronic Pain Is Not What I Wish Others Knew About Living With Chronic Pain 25 Unexpected Things That Happen When Chronic Pain Becomes Your ‘Normal’ When You Live in a Constant State of Pain

Community Voices

“Cursed and Gifted with AS”

March 1, 2018—Yay! I do have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms. This happened 37 years after my first symptom as a teenager, and almost 30 years after I began having chronic pain and other symptoms in parts of the body known to be affected by AS. Although some of my pain began after very minor injuries, I believe the chronic inflammation caused by AS was at the root of my health problems.

It’s genetic, man: My father and youngest brother, both named Rubin, had AS. My father’s symptoms began at age 18 with his first bout of uveitis. He soon developed unexplained knee and shoulder pain. In later years, he had GERD, a hip replacement, aortic valve disease, and colon cancer. His spine fused completely when he was in his 50s, and when he was 76, he fell and broke his neck in five places. He died at age 84 of a subdural hematoma.

“Little” Rubin’s battle with AS began with ulcerative colitis, which was initially misdiagnosed as irritable bowel syndrome (IBS). He also had chronic back and neck pain with very limited flexibility; he appeared to be fused like our father. Little Rubin eventually developed primary sclerosing cholangitis and bile duct cancer that I believe were complications of his AS-related colitis, and he passed away at age 50—just six months after our father died.

My story is similar to theirs, but like all AS patients, it’s different in its own way. The following is a timeline of my journey with AS:

Fall 1981—First shot fired: I was an active junior in high school when I began having unexplained fatigue. I could hardly get out of bed and had low energy during the day. My father, who besides having severe AS was an amputee with one leg, accused his able-bodied daughter of being lazy. I soon found that nicotine and caffeine helped me “manage” my fatigue, but after I gave them up many years later, my fatigue got progressively worse.

May 1989—Release the Kraken: I enlisted in the navy, and during boot camp I began having severe stomach pain and chronic constipation that was diagnosed as irritable bowel syndrome (IBS). After boot camp, I twisted my back slightly but developed persistent, severe pain that was diagnosed as chronic mid-back strain. Just two months after I injured my back, I hyperextended my knee and was diagnosed with chronic right knee strain. Why I had sudden, persistent pain was never investigated while I was in the service. I have dealt with chronic bowel, back, and knee pain ever since.

After having two major injuries in my first six months of active duty, I was placed on permanent light duty. Additionally, I was considered unfit for ship duty, so my seafaring dreams were crushed. At age 25, this was just the first of many disappointments caused by AS.

December 1992—Say hello to a new pain: One month after my son was born, I felt a sharp pain in my left hip that shot down to my knee. I was diagnosed with sciatica, which the doctor said was likely caused by the trauma of childbirth. Regular stretching helps, but I still get flares several times a year that hamper my mobility.

1998—Ah, my neck! I was rear-ended, and although the damage to my car was very minimal, I developed severe neck pain. I’d had no previous neck injuries, but I had herniated discs in three places. The natural curvature had straightened as well. The pain from that injury resolved, but I still have unexplained, extensive damage to my cervical spine and recurrent neck pain.

1999—Brace yourself: I started to get numbness, tingling, and pain in both wrists and hands that was diagnosed as carpal tunnel syndrome. Shortly after, I was diagnosed with GERD (GERD), and years later, with chronic gastritis. I reduced my digestive symptoms with medication and dietary changes, but they have persisted.

May 2000: Missed it by that much: After driving cross country, my back pain flared, and the x-ray showed “sclerosis” of my sacroiliac joint. I later learned that sclerosis (thickening or hardening of bone) is how sacroiliitis, an AS marker, can appear on an x-ray. The doctor didn’t mention this, but he tested me for the HLA-B27 gene. When it was negative, he diagnosed me with sacroiliac joint dysfunction. I received the same treatment that I’d gotten up until that point: physical therapy, NSAIDS, and painkillers.

January 2005—…and broke my sacroiliac: I bent to lift a bench when I suddenly felt such a sharp pain near my tailbone that I couldn’t stand back up. I was diagnosed with facet joint arthropathy and low back sprain, and received my first spinal injections. I was off work for five months, and at age 40 I began to realize that the biggest struggle of my life was going to be living in my own body.

2008-2010—Deterioration: My life became a pattern of manageable pain periodically interrupted by very painful flares. Now a single mother, I started working full time as an auto claims adjuster. Within months of driving hundreds of miles a week, my neck, back, and wrist pain flared up worse than they ever had. I was on disability for almost two years this time, during which my father and brother died. After their deaths, I became afraid I had AS, so I saw another doctor. This time, the x-ray of my sacroiliac joint was “unremarkable”, and I was still HLA-B27 negative, so he told me I didn’t have AS. He explained that my entire spine simply had degenerative disc disease.

2010-2017—Voodoo doll: During these years, I developed several new recurring symptoms: tenderness and pain in my chest and outer hips and thighs; pain in my thumb, heel, and elbow; shortness of breath; and excess protein and trace blood in my urine. I became depressed dealing with all this pain, and I’m sure my emotional state worsened my physical symptoms. I switched to a desk job, but sitting all day seemed to aggravate my symptoms even more.

In this 8-year period, I managed my pain with seven joint surgeries and numerous injections into ten different joints. I endured these procedures because I couldn’t take NSAIDS by mouth anymore. I also spent a small fortune on massages, heating pads, ice packs, braces, and seat cushions, and Biofreeze. I did get diagnosed with fibromyalgia in 2014, but the treatment for it had no effect on my joint and digestive symptoms.

Not surprisingly, working full-time became impossible, so I retired on disability in 2014. Fortunately, I managed to earn my master’s degree in 2010, and started teaching English as a Second Language to adults part-time after I retired. I love what I do, and it’s been a great diversion.

2018—Sick and tired of being sick and tired: After nearly 30 years of chronic pain and digestive issues, I’d gotten used to living with regular discomfort. However, I was growing weary of the flares, which were occurring more often and lasting longer (and now included debilitating fatigue and feverishness). Even the stiffness in my back in the morning, which used to be sporadic, had become a daily occurrence. It was like the first day of the flu every single day. When I could take it no longer, my only option was to go to the doctor for a Toradol (an NSAID) shot.

I was also an emotional wreck. Relieving stress was difficult. I had no energy for exercise, and leisure activities I’d previously enjoyed now increased my pain. I avoided social activities because of anticipated pain, but I was also tired of being housebound “socializing” through social media. Furthermore, I was angry that I although I was well-educated and experienced, my health had killed my career and stifled my earning potential. Worst of all, my disease had put a strain on my marriage and revealed how unsupportive some of my friends and family were. I was even called a hypochondriac. I became despondent, and occasionally suicidal.

Fortunately, when I reached the end of my rope, there was…Google. It started when I had a CT scan for an unrelated condition. The report said I had sacroiliitis and osteitis pubis—two diseases I’d never heard of, but had been suffering from for years. I googled their causes, and Ankylosing Spondylitis was all over the search results. I also discovered that my other recurrent conditions (costochondritis, trochanter bursitis, Achilles tendonitis, tennis and golfer’s elbow, De Quervain’s tenosynovitis) were possibly AS-related enthesitis.

I was convinced now that I had AS, but I remembered the HLA-B27 gene issue, so I did some research. I’m a black female, and I was surprised to learn that about half of African Americans with AS don’t have the gene. This wasn’t new information—it was discovered in the 1970s. Unfortunately, the doctors I’d seen up until then believed AS only happened to folks who were HLA-B27 positive, regardless of their symptoms.

Today— Acceptance and renewal: Armed with knowledge about AS and determined to have a thorough workup this time, I was fortunate to find a rheumatologist who really listened. He took my full history and ordered imaging studies of my entire spine, which showed active sacroiliitis and bone marrow edema (inflammation in the bone), two AS diagnostic criteria. He diagnosed me with AS when he got the test results and established a treatment plan. I was so relieved that I just sat in my car after the appointment and cried like a baby.

My first treatment was the biologic, Humira, which stopped working after several months. Now I’m on Enbrel, which helped give me my life back. I also manage my disease with regular stretching, exercise and massages, and I’ve found new leisure activities to relieve stress. Although I still live with daily pain and fatigue and occasional major flares, I’ve accepted my new life and no longer feel hopeless about my situation.

Lastly, I’ve also learned to forgive the people who haven’t been there for me and truly appreciate the angels who have. AS has been a curse and a gift in my life. It’s broken me physically over the years, but it’s also strengthened my resolve to live life to the fullest. Today, I’m the best I’ve ever been.

3 people are talking about this
Community Voices

“Cursed and Gifted with AS”

March 1, 2018—Yay! I do have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms. This happened 37 years after my first symptom as a teenager, and almost 30 years after I began having chronic pain and other symptoms in parts of the body known to be affected by AS. Although some of my pain began after very minor injuries, I believe the chronic inflammation caused by AS was at the root of my health problems.

It’s genetic, man: My father and youngest brother, both named Rubin, had AS. My father’s symptoms began at age 18 with his first bout of uveitis. He soon developed unexplained knee and shoulder pain. In later years, he had GERD, a hip replacement, aortic valve disease, and colon cancer. His spine fused completely when he was in his 50s, and when he was 76, he fell and broke his neck in five places. He died at age 84 of a subdural hematoma.

“Little” Rubin’s battle with AS began with ulcerative colitis, which was initially misdiagnosed as irritable bowel syndrome (IBS). He also had chronic back and neck pain with very limited flexibility; he appeared to be fused like our father. Little Rubin eventually developed primary sclerosing cholangitis and bile duct cancer that I believe were complications of his AS-related colitis, and he passed away at age 50—just six months after our father died.

My story is similar to theirs, but like all AS patients, it’s different in its own way. The following is a timeline of my journey with AS:

Fall 1981—First shot fired: I was an active junior in high school when I began having unexplained fatigue. I could hardly get out of bed and had low energy during the day. My father, who besides having severe AS was an amputee with one leg, accused his able-bodied daughter of being lazy. I soon found that nicotine and caffeine helped me “manage” my fatigue, but after I gave them up many years later, my fatigue got progressively worse.

May 1989—Release the Kraken: I enlisted in the navy, and during boot camp I began having severe stomach pain and chronic constipation that was diagnosed as irritable bowel syndrome (IBS). After boot camp, I twisted my back slightly but developed persistent, severe pain that was diagnosed as chronic mid-back strain. Just two months after I injured my back, I hyperextended my knee and was diagnosed with chronic right knee strain. Why I had sudden, persistent pain was never investigated while I was in the service. I have dealt with chronic bowel, back, and knee pain ever since.

After having two major injuries in my first six months of active duty, I was placed on permanent light duty. Additionally, I was considered unfit for ship duty, so my seafaring dreams were crushed. At age 25, this was just the first of many disappointments caused by AS.

December 1992—Say hello to a new pain: One month after my son was born, I felt a sharp pain in my left hip that shot down to my knee. I was diagnosed with sciatica, which the doctor said was likely caused by the trauma of childbirth. Regular stretching helps, but I still get flares several times a year that hamper my mobility.

1998—Ah, my neck! I was rear-ended, and although the damage to my car was very minimal, I developed severe neck pain. I’d had no previous neck injuries, but I had herniated discs in three places. The natural curvature had straightened as well. The pain from that injury resolved, but I still have unexplained, extensive damage to my cervical spine and recurrent neck pain.

1999—Brace yourself: I started to get numbness, tingling, and pain in both wrists and hands that was diagnosed as carpal tunnel syndrome. Shortly after, I was diagnosed with GERD (GERD), and years later, with chronic gastritis. I reduced my digestive symptoms with medication and dietary changes, but they have persisted.

May 2000: Missed it by that much: After driving cross country, my back pain flared, and the x-ray showed “sclerosis” of my sacroiliac joint. I later learned that sclerosis (thickening or hardening of bone) is how sacroiliitis, an AS marker, can appear on an x-ray. The doctor didn’t mention this, but he tested me for the HLA-B27 gene. When it was negative, he diagnosed me with sacroiliac joint dysfunction. I received the same treatment that I’d gotten up until that point: physical therapy, NSAIDS, and painkillers.

January 2005—…and broke my sacroiliac: I bent to lift a bench when I suddenly felt such a sharp pain near my tailbone that I couldn’t stand back up. I was diagnosed with facet joint arthropathy and low back sprain, and received my first spinal injections. I was off work for five months, and at age 40 I began to realize that the biggest struggle of my life was going to be living in my own body.

2008-2010—Deterioration: My life became a pattern of manageable pain periodically interrupted by very painful flares. Now a single mother, I started working full time as an auto claims adjuster. Within months of driving hundreds of miles a week, my neck, back, and wrist pain flared up worse than they ever had. I was on disability for almost two years this time, during which my father and brother died. After their deaths, I became afraid I had AS, so I saw another doctor. This time, the x-ray of my sacroiliac joint was “unremarkable”, and I was still HLA-B27 negative, so he told me I didn’t have AS. He explained that my entire spine simply had degenerative disc disease.

2010-2017—Voodoo doll: During these years, I developed several new recurring symptoms: tenderness and pain in my chest and outer hips and thighs; pain in my thumb, heel, and elbow; shortness of breath; and excess protein and trace blood in my urine. I became depressed dealing with all this pain, and I’m sure my emotional state worsened my physical symptoms. I switched to a desk job, but sitting all day seemed to aggravate my symptoms even more.

In this 8-year period, I managed my pain with seven joint surgeries and numerous injections into ten different joints. I endured these procedures because I couldn’t take NSAIDS by mouth anymore. I also spent a small fortune on massages, heating pads, ice packs, braces, and seat cushions, and Biofreeze. I did get diagnosed with fibromyalgia in 2014, but the treatment for it had no effect on my joint and digestive symptoms.

Not surprisingly, working full-time became impossible, so I retired on disability in 2014. Fortunately, I managed to earn my master’s degree in 2010, and started teaching English as a Second Language to adults part-time after I retired. I love what I do, and it’s been a great diversion.

2018—Sick and tired of being sick and tired: After nearly 30 years of chronic pain and digestive issues, I’d gotten used to living with regular discomfort. However, I was growing weary of the flares, which were occurring more often and lasting longer (and now included debilitating fatigue and feverishness). Even the stiffness in my back in the morning, which used to be sporadic, had become a daily occurrence. It was like the first day of the flu every single day. When I could take it no longer, my only option was to go to the doctor for a Toradol (an NSAID) shot.

I was also an emotional wreck. Relieving stress was difficult. I had no energy for exercise, and leisure activities I’d previously enjoyed now increased my pain. I avoided social activities because of anticipated pain, but I was also tired of being housebound “socializing” through social media. Furthermore, I was angry that I although I was well-educated and experienced, my health had killed my career and stifled my earning potential. Worst of all, my disease had put a strain on my marriage and revealed how unsupportive some of my friends and family were. I was even called a hypochondriac. I became despondent, and occasionally suicidal.

Fortunately, when I reached the end of my rope, there was…Google. It started when I had a CT scan for an unrelated condition. The report said I had sacroiliitis and osteitis pubis—two diseases I’d never heard of, but had been suffering from for years. I googled their causes, and Ankylosing Spondylitis was all over the search results. I also discovered that my other recurrent conditions (costochondritis, trochanter bursitis, Achilles tendonitis, tennis and golfer’s elbow, De Quervain’s tenosynovitis) were possibly AS-related enthesitis.

I was convinced now that I had AS, but I remembered the HLA-B27 gene issue, so I did some research. I’m a black female, and I was surprised to learn that about half of African Americans with AS don’t have the gene. This wasn’t new information—it was discovered in the 1970s. Unfortunately, the doctors I’d seen up until then believed AS only happened to folks who were HLA-B27 positive, regardless of their symptoms.

Today— Acceptance and renewal: Armed with knowledge about AS and determined to have a thorough workup this time, I was fortunate to find a rheumatologist who really listened. He took my full history and ordered imaging studies of my entire spine, which showed active sacroiliitis and bone marrow edema (inflammation in the bone), two AS diagnostic criteria. He diagnosed me with AS when he got the test results and established a treatment plan. I was so relieved that I just sat in my car after the appointment and cried like a baby.

My first treatment was the biologic, Humira, which stopped working after several months. Now I’m on Enbrel, which helped give me my life back. I also manage my disease with regular stretching, exercise and massages, and I’ve found new leisure activities to relieve stress. Although I still live with daily pain and fatigue and occasional major flares, I’ve accepted my new life and no longer feel hopeless about my situation.

Lastly, I’ve also learned to forgive the people who haven’t been there for me and truly appreciate the angels who have. AS has been a curse and a gift in my life. It’s broken me physically over the years, but it’s also strengthened my resolve to live life to the fullest. Today, I’m the best I’ve ever been.

3 people are talking about this
Community Voices

If your #ChronicIllness was a flower, which flower would it be and why?

<p>If your <a class="tm-topic-link mighty-topic" title="Chronic Illness" href="/topic/chronic-illness/" data-id="5b23ce6f00553f33fe98fe39" data-name="Chronic Illness" aria-label="hashtag Chronic Illness">#ChronicIllness</a> was a flower, which flower would it be and why?</p>
54 people are talking about this
Community Voices

“Cursed and Gifted with AS”

March 1, 2018—Yay! I do have a chronic, debilitating, painful, and incurable disease! My lifelong nightmare was over when I was diagnosed with Ankylosing Spondylitis and prescribed medication to help prevent, instead of just treat, my symptoms. This happened 37 years after my first symptom as a teenager, and almost 30 years after I began having chronic pain and other symptoms in parts of the body known to be affected by AS. Although some of my pain began after very minor injuries, I believe the chronic inflammation caused by AS was at the root of my health problems.

It’s genetic, man: My father and youngest brother, both named Rubin, had AS. My father’s symptoms began at age 18 with his first bout of uveitis. He soon developed unexplained knee and shoulder pain. In later years, he had GERD, a hip replacement, aortic valve disease, and colon cancer. His spine fused completely when he was in his 50s, and when he was 76, he fell and broke his neck in five places. He died at age 84 of a subdural hematoma.

“Little” Rubin’s battle with AS began with ulcerative colitis, which was initially misdiagnosed as irritable bowel syndrome (IBS). He also had chronic back and neck pain with very limited flexibility; he appeared to be fused like our father. Little Rubin eventually developed primary sclerosing cholangitis and bile duct cancer that I believe were complications of his AS-related colitis, and he passed away at age 50—just six months after our father died.

My story is similar to theirs, but like all AS patients, it’s different in its own way. The following is a timeline of my journey with AS:

Fall 1981—First shot fired: I was an active junior in high school when I began having unexplained fatigue. I could hardly get out of bed and had low energy during the day. My father, who besides having severe AS was an amputee with one leg, accused his able-bodied daughter of being lazy. I soon found that nicotine and caffeine helped me “manage” my fatigue, but after I gave them up many years later, my fatigue got progressively worse.

May 1989—Release the Kraken: I enlisted in the navy, and during boot camp I began having severe stomach pain and chronic constipation that was diagnosed as irritable bowel syndrome (IBS). After boot camp, I twisted my back slightly but developed persistent, severe pain that was diagnosed as chronic mid-back strain. Just two months after I injured my back, I hyperextended my knee and was diagnosed with chronic right knee strain. Why I had sudden, persistent pain was never investigated while I was in the service. I have dealt with chronic bowel, back, and knee pain ever since.

After having two major injuries in my first six months of active duty, I was placed on permanent light duty. Additionally, I was considered unfit for ship duty, so my seafaring dreams were crushed. At age 25, this was just the first of many disappointments caused by AS.

December 1992—Say hello to a new pain: One month after my son was born, I felt a sharp pain in my left hip that shot down to my knee. I was diagnosed with sciatica, which the doctor said was likely caused by the trauma of childbirth. Regular stretching helps, but I still get flares several times a year that hamper my mobility.

1998—Ah, my neck! I was rear-ended, and although the damage to my car was very minimal, I developed severe neck pain. I’d had no previous neck injuries, but I had herniated discs in three places. The natural curvature had straightened as well. The pain from that injury resolved, but I still have unexplained, extensive damage to my cervical spine and recurrent neck pain.

1999—Brace yourself: I started to get numbness, tingling, and pain in both wrists and hands that was diagnosed as carpal tunnel syndrome. Shortly after, I was diagnosed with GERD (GERD), and years later, with chronic gastritis. I reduced my digestive symptoms with medication and dietary changes, but they have persisted.

May 2000: Missed it by that much: After driving cross country, my back pain flared, and the x-ray showed “sclerosis” of my sacroiliac joint. I later learned that sclerosis (thickening or hardening of bone) is how sacroiliitis, an AS marker, can appear on an x-ray. The doctor didn’t mention this, but he tested me for the HLA-B27 gene. When it was negative, he diagnosed me with sacroiliac joint dysfunction. I received the same treatment that I’d gotten up until that point: physical therapy, NSAIDS, and painkillers.

January 2005—…and broke my sacroiliac: I bent to lift a bench when I suddenly felt such a sharp pain near my tailbone that I couldn’t stand back up. I was diagnosed with facet joint arthropathy and low back sprain, and received my first spinal injections. I was off work for five months, and at age 40 I began to realize that the biggest struggle of my life was going to be living in my own body.

2008-2010—Deterioration: My life became a pattern of manageable pain periodically interrupted by very painful flares. Now a single mother, I started working full time as an auto claims adjuster. Within months of driving hundreds of miles a week, my neck, back, and wrist pain flared up worse than they ever had. I was on disability for almost two years this time, during which my father and brother died. After their deaths, I became afraid I had AS, so I saw another doctor. This time, the x-ray of my sacroiliac joint was “unremarkable”, and I was still HLA-B27 negative, so he told me I didn’t have AS. He explained that my entire spine simply had degenerative disc disease.

2010-2017—Voodoo doll: During these years, I developed several new recurring symptoms: tenderness and pain in my chest and outer hips and thighs; pain in my thumb, heel, and elbow; shortness of breath; and excess protein and trace blood in my urine. I became depressed dealing with all this pain, and I’m sure my emotional state worsened my physical symptoms. I switched to a desk job, but sitting all day seemed to aggravate my symptoms even more.

In this 8-year period, I managed my pain with seven joint surgeries and numerous injections into ten different joints. I endured these procedures because I couldn’t take NSAIDS by mouth anymore. I also spent a small fortune on massages, heating pads, ice packs, braces, and seat cushions, and Biofreeze. I did get diagnosed with fibromyalgia in 2014, but the treatment for it had no effect on my joint and digestive symptoms.

Not surprisingly, working full-time became impossible, so I retired on disability in 2014. Fortunately, I managed to earn my master’s degree in 2010, and started teaching English as a Second Language to adults part-time after I retired. I love what I do, and it’s been a great diversion.

2018—Sick and tired of being sick and tired: After nearly 30 years of chronic pain and digestive issues, I’d gotten used to living with regular discomfort. However, I was growing weary of the flares, which were occurring more often and lasting longer (and now included debilitating fatigue and feverishness). Even the stiffness in my back in the morning, which used to be sporadic, had become a daily occurrence. It was like the first day of the flu every single day. When I could take it no longer, my only option was to go to the doctor for a Toradol (an NSAID) shot.

I was also an emotional wreck. Relieving stress was difficult. I had no energy for exercise, and leisure activities I’d previously enjoyed now increased my pain. I avoided social activities because of anticipated pain, but I was also tired of being housebound “socializing” through social media. Furthermore, I was angry that I although I was well-educated and experienced, my health had killed my career and stifled my earning potential. Worst of all, my disease had put a strain on my marriage and revealed how unsupportive some of my friends and family were. I was even called a hypochondriac. I became despondent, and occasionally suicidal.

Fortunately, when I reached the end of my rope, there was…Google. It started when I had a CT scan for an unrelated condition. The report said I had sacroiliitis and osteitis pubis—two diseases I’d never heard of, but had been suffering from for years. I googled their causes, and Ankylosing Spondylitis was all over the search results. I also discovered that my other recurrent conditions (costochondritis, trochanter bursitis, Achilles tendonitis, tennis and golfer’s elbow, De Quervain’s tenosynovitis) were possibly AS-related enthesitis.

I was convinced now that I had AS, but I remembered the HLA-B27 gene issue, so I did some research. I’m a black female, and I was surprised to learn that about half of African Americans with AS don’t have the gene. This wasn’t new information—it was discovered in the 1970s. Unfortunately, the doctors I’d seen up until then believed AS only happened to folks who were HLA-B27 positive, regardless of their symptoms.

Today— Acceptance and renewal: Armed with knowledge about AS and determined to have a thorough workup this time, I was fortunate to find a rheumatologist who really listened. He took my full history and ordered imaging studies of my entire spine, which showed active sacroiliitis and bone marrow edema (inflammation in the bone), two AS diagnostic criteria. He diagnosed me with AS when he got the test results and established a treatment plan. I was so relieved that I just sat in my car after the appointment and cried like a baby.

My first treatment was the biologic, Humira, which stopped working after several months. Now I’m on Enbrel, which helped give me my life back. I also manage my disease with regular stretching, exercise and massages, and I’ve found new leisure activities to relieve stress. Although I still live with daily pain and fatigue and occasional major flares, I’ve accepted my new life and no longer feel hopeless about my situation.

Lastly, I’ve also learned to forgive the people who haven’t been there for me and truly appreciate the angels who have. AS has been a curse and a gift in my life. It’s broken me physically over the years, but it’s also strengthened my resolve to live life to the fullest. Today, I’m the best I’ve ever been.

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Jae Cobb
Jae Cobb @jaecobb
contributor

Color Alternative to Spoon Theory for Explaining Chronic Illness

As a person living with many chronic illnesses, there are many symptoms and side effects I deal with on a daily basis. Perhaps the most consistent ones are nausea, vomiting, fatigue, heart palpitations, swelling, episodes of tachycardia, migraine or a headache in general, weakness and of course pain. And as I have worked on adjusting to this life, I have of course learned to manage these things but within that same breath I also judge what I am going to accomplish or just my overall feeling for the day based on how active things are or how many symptoms are kicking up. Now, many chronic illness warriors use the spoon theory, which uses spoons as a measurement of energy and the more energy something takes, then the more spoons you take away from your day’s “supply.” At first I didn’t get it, but then spoons and forks started disappearing from the kitchen and it all clicked. I used to think there was a thief in the dishwasher stealing my silverware , and while I still don’t know where all my silverware went, I have to make do with what’s left because I refuse to go to the store and buy another set of flatware at this point in time. And that’s when the spoon theory made sense to me. I get a set amount of “spoons” daily and once they are all gone, that’s it. Some days, I use most of my spoons just getting out of bed and then the rest get used bathing or brushing my teeth. And some days I may get up and feel pretty good and then as the day goes on, I just use it all up and I have borrowed from the next day and now I am at a deficit. So the whole point is this: we only get a certain amount of spoons each day and we should carefully think about what activities we do daily. Which leads me to the system that I use most over the spoon theory. Meteorologist use colors and scales with colors to explain pollen levels or gauge risks for severe weather. I have somewhat adapted this level to measure what type of day I am having. For example: Green: This means it’s a good day. I am feeling pretty OK and I can complete tasks with ease. I am moving pretty well and need minimal assistance. Yellow: This means I am moving a bit slower. It may take me longer to complete some tasks and I need to rest frequently. After I complete some tasks, if I nap I may have some more strength and energy to go do something else very low key later on. Orange: This means “warning.” On these days, I really need to watch what I do because if I do too much I will be in a dangerous place and it may take me much longer to recover than if I just sit and rest. These days normally come after a long work week or if I have been doing more than I should be. The days where I wake up at an orange are the hardest because it takes so much to just bathe and get dressed. Sadly, there are many of these days that I still have to go to work or complete some tasks like the laundry or go to the store because it is just me in my household, and I have to keep things going. Once those tasks are finished, I do make sure to come home and rest afterwards. However, there are some orange days where I am able to just rest, which is great because that is exactly what I need to be doing. Red: This means “not today” — don’t ask me to move or do a thing. These are my super bad days; I mostly stay in the bed all day. I only get up to get fluids and to use the bathroom. On these days, my number one priority is myself and making sure I am actually resting my body. I tend not to even touch my phone or computer because it makes everything worse. These days are especially dangerous for me because I have ran all of my reserves down. There is literally nothing left in me and that is not good at all. I try to avoid getting here as much as possible, but sometimes it is unavoidable because of the chaos at work or the juggling of appointments and familial drama just drains it all out of you. And if I get to a red day, it usually takes me about a week to recover. It is also important to understand that I may start my day off at a green and because I feel so good, I overdo it and then boom, I am at an orange or a red. It has happened more times than I can count. But this is why we need to listen to our bodies and when the warning alarms begin to go off, it is important to listen to avoid further complications down the road. I can remember one particular time when I kept pushing my body day after day after day, and not only did I end up with an infection, I lost my voice for a month and had the flare of a lifetime. I then fell down the stairs and things continued to be compounded after that. And even after that, I did not rest or listen and it took almost four months to heal completely. I still firmly believe that much of this was caused because I was not taking the cues from my body and let things progressively stack on top of each other. It took me from green to red with no stops in between. Another place where this system comes in handy is when communicating with family and friends about how you feel or how things are going. When folks ask me how I am doing, I mostly say “I am OK” or “I’m fine” because it is way harder to explain how I feel. And many people see my discussing my state of chronic illness as negative or that I am complaining, and that is not the case. But the truth is this is my reality — I will be ill for the rest of my life. I am in some sort of dysfunction every day — the level of that dysfunction just varies day to day. That is what life is like with chronic illness. For me, though, I just never know what, when and how bad illnesses are going to act up. It is a game of Russian roulette. However, I have been called out for my response always being “I am OK” or “I am fine” because it is generic and emotionless. I know there are some people I can be honest with and disclose precisely how I feel, and they take it in a way that is caring and helpful. Then, there are others who don’t know how to handle it and run away from once they get that answer. So, I have found it easier for folks to understand the color system because it isn’t me talking about my symptoms or what is flaring up, but me talking about my ability for that day or moment. Many can relate to “today is red day so I am not able to go out” or “I am at a yellow, I am moving a bit slower” versus “my lupus is flaring up today, I can’t go” or “ I feel like my insides are falling out while someone is shoving razor blades up my vagina.” It is amazing how wording can make a world of difference in getting folks to understand. I would challenge each of you to find a way to communicate how you feel in a way that is clear for you, but also remember it is not your fault you are ill. Others may not get what you go through and why you respond the way you do about how you feel and your ability to do things. But, that is not for you to deal with. I use this system more for myself so I can gauge what I am able to do and pause when needed in order take care of myself. It is just an added bonus that folks relate and can have insight into my chronic illness journey. Remember, this journey is yours and at the end of the day, you have to care for you and do what works for you, not anyone else. Rock on, my warriors!