Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last edition of Chronic Illness Spotlight, we learned about Functional Neurological Disorder. In today’s edition we will learn about Ankylosing Spondylitis and will feature Nicole Loffler.
What is Ankylosing Spondylitis?
According to the Mayo Clinic, “Ankylosing Spondylitis is an inflammatory disease that, over time, can cause some of the vertebrae in your spine to fuse.”
When the fusing does occur it makes the spine less flexible and causes debilitating chronic pain. Ankylosing Spondylitis can also cause other joints of the body to become inflamed and swollen. In its rarest form it can also affect the heart and lungs and eyes.
Symptoms of Ankylosing Spondylitis:
- Pain and stiffness in your lower back and hips
- Neck pain
- Mild fever
- loss of appetite
- Mild to moderate anemia
The areas most commonly affected:
- Joint between the base of your spine and your pelvis
- Vertebrae in your lower back
- Places where your tendons and ligaments attach to bones in the spine
- Cartilage between your breastbone and ribs
- Hip and shoulder joints
For more information:
Meet Nicole Loffler!
Nicole is from Perth, Australia. I “met” Nicole on one of the online Chronic Illness Support Groups I am a member of. As part of the Admin Team of the group, she is always there for everyone with a kind word and is one of the most encouraging people I know!
Thank you so much for sharing your story with us!
Don’t give up. Research and be your own best advocate. Exercise and stretch every day, even if it causes pain.
Nicole’s Chronic Illness Story
What Chronic Illnesses have you been diagnosed with?
Ankylosing Spondylitis (AS)
Ehlers Danlos Syndrome (EDS)
Psoriasis Lower Lung Disease
Functional Neurological Disorder (FND)
Briefly explain your illness
Ankylosing Spondylitis is form of arthritis which attacks the SI joints, hips and spine and fuses them together. It is extremely painful, rating as one of the most painful conditions, and can affect mobility, particularly bending. It has also caused permanent damage in my left leg, with the tendons calcifying, bursitis and unrelenting sciatica.
Gastroparesis, GERD and Ulcerative Colitis all affect the digestive system. The Gastroparesis causes me to regurgitate (vomit) up food as my stomach doesn’t empty properly. I have a lot of bowel issues.
Chronic fatigue as a result of AS, and narcolepsy both mean I suffer from extreme, debilitating fatigue.
Narcolepsy results in me falling asleep without warning, and I’ll often wake with sleep paralysis (which is utterly terrifying).
Functional Neurological Disorder is a brain disease which mimics MS. Staying mentally alert, following conversations and multitasking are difficult. It has also affected some muscle memory tasks like tying shoelaces or using the shower, but thankfully they haven’t become permanent.
How has your illnesses impacted your life?
Being in constant pain and suffering debilitating fatigue means I needed to resign from my teaching profession. I also have quite a small window where I can function in a day. Generally, I have 6 good hours where I can get all my housework and meal preparation done. After lunch, I mostly need to rest. I can’t eat out and am always hesitant to eat food prepared by anyone but myself due to severe, life-threatening allergies.
How long did it take to get diagnosed?
With the exception of the Gastroparesis and narcolepsy, I was fortunate to get diagnosed very quickly. AS is notoriously difficult to get diagnosed, normally averaging a decade to get answers, but I was diagnosed within 6 weeks. The longest has been the narcolepsy, which has taken over 25 years to be diagnosed.
Why do you think it took that long to get a diagnosis?
Narcolepsy has been slow as it doesn’t show up on blood tests. The only way to get a diagnosis is to do a night and day sleep study, and it’s not something General Practitioners recommend for fatigue. It has also been complicated by the overlap of chronic fatigue as a result of the AS. It had kind of been explained away.
How is your life different now compared to a few years ago?
Surprisingly, my life is happier now than it was when I was working, studying and raising two small children. ‘Retiring’ has helped me be there for my husband and children and has resulted in two remarkable young people. It’s also given me time to cook well, sew and craft.
What do you do on you bad days to make them better?
I distract myself when the pain is high, whether it’s in the kitchen, or watching Netflix while playing on my iPad. I also put a lot of time in caring for others as an admin on the online forum, Medical Musings with Friends. Focusing on the needs of others helps to keep things in perspective.
How do you handle the isolation you may experience because of your chronic illness?
With our online Medical Musings with Friends family, I never feel lonely. Not to mention having a household of 5 adults to care for.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Don’t give up. Research and be your own best advocate. Exercise and stretch every day, even if it causes pain. There are very few conditions where exercise or the associated pain will negatively impact your health, so the pain isn’t actually telling you to stop. It’s the best recommendation I can give. Always best to do it under the care of a physiotherapist.
I would like to thank Nicole for sharing her story with The Frozen Mind. Her positive outlook and kindness means more to me than she could ever know.
Chronic Illness Spotlight Articles:
- Chronic Illness Spotlight: Familial Mediterranean Fever
- Chronic Illness Spotlight: Rare Bone Disease & More
- Chronic Illness Spotlight: Ehlers Danlos Syndrome
- Chronic Illness Spotlight: Myalgic Encephalomyelitis & Fibromyalgia
- Chronic Illness Spotlight: Atypical Bilateral Trigeminal Neuralgia
Disclaimer: This blog post provides general information and first hand accounts about a serious medical condition. The words and other content provided in this blog, and in any linked materials, are not intended and should not be construed as medical advice.