Hey guys! Mike Lee, Co-Founder and CEO here!
For our 3rd edition of “Soul Sessions” I sat down with Soul CBD customer, Daphnee, to discuss both of our journey’s with Ankylosing Spondylitis, an autoimmune disease that causes chronic inflammation and pain. We hope to shed light for anyone that might have these symptoms and provide some solutions that might work for anyone who struggles with an autoimmune disease.
Thanks for sharing your story Daphnee! Tell us a little about your experience with Ankylosing Spondylitis?
Daphnee: No problem! My mission is to help others through my story. Ankylosing Spondylitis is best described as an autoimmune arthritis and chronic inflammatory disease. Usually it starts in the sacroiliac joint (the bony structure above the tailbone), but as many find out it can spread to other joints. In the long terms there is a danger of fusing as your body reacts to the inflammation against itself.
How long did it take for you to diagnose it?
Daphnee: It took 7 years to get diagnosed, my first flare was when I was 18 (14 years ago). The average for women is 7-8 years and men 3-4 years. Since it is more common in men, it's harder to diagnose for women. As an 18 year old, I was questioned if it was all in my head. Needless to say, I did not seek out the proper help until I was in excruciating pain for months on end.
Mike: I'm sorry it took so long. I know first hand how frustrating it is dealing with these symptoms for years without getting a proper diagnosis. I’m glad we can share this with people so they can keep hope. That is the key, stay positive, don't give up and keep looking for answers and solutions to the pain. (Not recommended. haha!)
What are some of the big signs and symptoms you saw for Ankylosing Spondylitis?
Daphnee: This condition has symptoms that can be incredibly different for each person, which is another reason I believe it can take awhile to get diagnosed. You can have the gene and not the condition and vice versa.
Some of the big signs and symptoms are:
Pain in the lower back, buttocks and hips that develops slowly over weeks, or months.
Pain, swelling, redness and warmth in the toes, heels, ankles, knees, rib cage, upper spine, shoulders and neck.
Stiffness when first waking up or after long periods of rest.
Back pain during the night or early morning.
If this sounds familiar, it's important to reach out to a rheumatologist to get proper support and the necessary tests done. There are no specific tests done but most people who have ankylosing spondylitis have the HLA-B27 gene so you get tested for that along with MRI’s and X Rays.
Mike: These are the exact symptoms I was getting as well! The fatigue was a huge issue for me which obviously can affect your mood. I think anytime people are in pain some general fatigue is natural. I also experience brain fog and slow mornings no matter how much sleep I get. I urge people to not only see a rheumatologist but especially look into Functional Medicine which looks at the body from a more holistic approach.
What are ways you manage your symptoms?
Daphnee: It’s taken me years to figure out how best to manage AS, it’s been trial and error, but ultimately, it’s made me realize that this challenge has been a blessing. I’ve had to take major steps in my lifestyle, physical and mental health – steps I might not have taken until much much later, if ever.
“After a particularly bad flare up, where I couldn’t even crawl to the bathroom at 3am and my husband had to carry me, I made the decision that from now on, my health was number one."
Managing my STRESS. I don’t think we realize (until burnout) how much havoc stress causes on our physical and mental bodies. I’ve identified it as a major trigger, and most of my decisions and mindset are programmed to handle my stress better. I now live in Florida where it’s mostly sunny and that’s had tremendously positive effects on my mood and therefore body. I’ve also implemented daily routines, journaling, and baths.
Nourish my body with good foodMy doctors definitely didn't know how best advise with nutrition, and it certainly is a hot topic as there is so much information out there. However, eliminating inflammatory foods (like processed foods and dairy), and sticking to (what some might consider) a strict diet of 80-90% plants, has been extremely powerful for me. Listening to your body will be key to finding what works best for you.
Developing a positive/growth mindset. You might have noticed I don’t usually say “my” disease or what “I have” but rather “I was diagnosed with” or my challenge. I’ve purposely never wanted to give it more power. The condition is not my identity. Also, I decided to look at it as a gift to be the healthiest version of myself and not as an obstacle. It takes a lot of personal development work daily to achieve this but I believe mindset is key. I remember doing a free personality test online to find my character strengths as suggested in the ‘Happiness Advantage’ by Shawn Achor and “hope” was my top one. Shawn suggested practicing your top one daily to create more happiness in your life. It’s why I’ve decided to be more open and share what I’ve learned.
Finding Natural Alternatives to Meds. I’m lucky enough to be off meds for the most part and so incredibly grateful to finally have been able to add CBD to my daily wellness tool kit! For years, I tried a few CBD companies and didn't think CBD was for me. I heard it significantly helped inflammation and stress (aka everything I need!), but I absolutely hated the taste of it and wanted to find a product without any THC. After a hip strain left me recently unable to move my body, I could feel the inflammation creeping in and decided to give it another go – and I’m so happy I did! I genuinely feel so much better and haven't had any signs of a flare up! Soul CBD tastes so good I have to ration myself with their gummies and tinctures. HAHA! Needless to say I’m now a monthly subscriber.
Mike: THIS is a big reason why I started Soul CBD. I noticed so much help with my anxiety, sleep and pain with CBD. I think looking into as many all natural, low risk high reward solutions is ideal with this. It is way too easy dealing with auto-immune conditions to just keep piling on the pills/painkillers. I have found that breathing techniques and daily meditation has drastically helped my headaches and fatigue. I like to do just 10-15 minutes a day and it brings me back into a parasympathetic state of rest and digest. I use the calm app but there are SO many tools today at our fingertips. So great sitting down with you today!