AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.
You don’t have to read much of Maureen’s story to realize that she is the poster child for Multiple Autoimmune Syndrome. Even though her primary symptom was joint pain, her flares coincided with many other autoimmune issues, from itchy skin to infertility. It’s a testament to the growing community of autoimmune warriors online that Maureen was introduced to the AIP when her prescriptions were failing her, and that she has experienced such an incredible turnaround.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
I have been dealing with psoriatic arthritis, plantar fasciitis, chronic urticaria, infertility, IBS, and eczema. I was diagnosed with a psoriatic arthritis (PSA) in February 2018. Most people think of arthritis as a disease old people get which only affects the joints, but it also affects my ligaments causing a painful condition called enthesitis. For many years leading up to this diagnosis, I have had ongoing aches and pains that would come and go but never would resolve: chest pain, plantar fasciitis, eczema, hives, IBS, ankle pain, back pain, knee pain. I went to ALL the doctors — orthopedist, podiatrist, GI, dermatologist, naturopath, general practitioner, allergist, fertility specialist. Because my labs were always normal, I was told I was fine. I assumed my pains were from overuse from being active and my IBS was just something I had to live with. In January 2018 my entire body went into a full psoriatic arthritis flare and a month later I was diagnosed by a rheumatologist.
Describe what the lowest point on your health journey was like.
Leading up to my PSA flare in 2018, my (now) husband and I had been trying to get pregnant for a couple of years. Month after month for years my life was a rollercoaster of emotion, feeling hope during ovulation followed by disappointment when my period would start. I would cry then wallow over a bottle of wine to ease my sadness. I had a miscarriage at 6 weeks, which for lack of a better word, sucked. Being 38 at the time, I knew I had to see a fertility specialist.
That doctor told me I had advanced ovarian age (which I now know is common in autoimmune disease) and my chances of IVF working were less than 20%. I decided against fertility treatments. My intuition told me something was physically not quite right and that I needed to get my health on track first. Infertility is the hardest thing I’ve ever had to deal with. I was at an all-time low. I cried any time I was alone. Some days I didn’t want to get out of bed because I felt so tired and depressed.
I kept this sadness mostly to myself and it started to take a toll on me. I started breaking out in hives so I went to a dermatologist. She basically asked me if I had a lot of stress in my life. I cried as I answered, yes. During this time I was also planning my sister’s baby shower. I was so excited for her that I had not realized how stressed I truly was. My sister convinced me to go talk to someone, so I did. I went to one therapy session and was cured! The therapist had been in the EXACT same situation and told me it’s ok to be sad and mourn during this time and that when I was ready to take action and deal with it, I will. That was just what I needed to hear. Emotionally, I felt better already.
Fast forward two months later, just two days before the 2018 new year, I woke up and before I even got out of bed, I could hardly move my ankle. I hobbled out of bed and told my husband my ankle was killing me. The ankle looked fine so he basically blew it off as one of my many aches and pains. Over the next few days the pain got worse and started migrating. It went from one ankle to my knee, to the other ankle and other knee, then my hips, elbows, biceps, hamstrings. Stepping into the shower, getting dressed, walking from my car to work were suddenly incredibly painful tasks. I was experiencing fever and chills and more hives and itchy skin. My entire body felt so awful. I was scared because I had no idea what was happening. Even Dr. Google couldn’t diagnose me.
I went to the urgent care, and then to my doctor, both of whom told me to just take an NSAID. The most frustrating part was that no one believed the pain I was experiencing because I looked normal on the outside. I think that is the hardest part of autoimmune disease. It’s so hard to understand someone’s struggles when they appear healthy on the outside. It wasn’t until my ankle, who I named Big Bertha, swelled up so badly it felt like it would explode and my CRP lab (inflammatory marker) was through the roof that my doctor agreed something was wrong. I was given a course of prednisone which finally relieved my pain but quickly came back when I stopped the medication. He referred me to a rheumatologist. The rheumatologist diagnosed me with psoriatic arthritis while she stared into her computer screen. She did not tell me one thing about the disease. I walked out of the office and into my car to google ‘what is psoriatic arthritis’. This horrendous flare lasted for about the first two months of 2018 and I spent the rest of the year worrying every single day that it would happen again.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
I did not like the treatment I was receiving from my first rheumatologist so I found a new one who actually sat with me and listened to all of my symptoms and looked at my health as a whole. She told me to hold off on starting the Cimzia since my flare was starting to subside. She told me to come back to her in three months and we would see how I was doing. At my next appointment I read her all my symptoms. (I keep a pain diary to keep track which has been very helpful). She said I definitely have a migratory arthralgia and should start the medication so I can start feeling better. She said I shouldn’t experience any side effects. Initially after starting the medication, my hands and ankles already felt better. I could hold things without feeling a throbbing pain. I was psyched! But then a month after, I started to feel awful. Fatigue, GERD, brain fog, sore throat and mucous, bad pain in my neck and base of skull, headaches. I could not tolerate one more day of this so I stopped the meds. During this time I reached out to my PSA support group on Facebook for tips and advice on meds. I started realizing that most of these people on meds were still miserable. I decided to join another group that treated PSA with natural solutions. I knew this was the route I wanted to try next. Even though I am a pharmacist, I prefer to treat the cause before resorting to medication.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
I started with Dr. Amy Myers’ book, The Autoimmune Solution. Dr. Myers talks about her history with Graves’ disease and even though it is a different disease I could totally relate to her experiences. She spoke to me. She explained the importance of healing the gut by following a strict Autoimmune Protocol diet. Healing my gut and in turn my IBS, was exactly what I needed to do so I dove into this diet full force. I even cut out my beloved espresso.
The first two weeks were hell. I was exhausted from lack of caffeine and was in the kitchen cooking and prepping constantly. I was breaking out in hives again, my eczema was back, and I had headaches. With the support of my husband, I powered through and around day 14 I suddenly started feeling better. I had ENERGY! Brain fog had lifted. (I didn’t even realize how bad I had it until it was gone). My finger pain had lessened. I could eat lots of fruits and veggies without my stomach getting insanely bloated. I started to have a positive outlook on my health. I started to truly enjoy trying new foods and cooking for my husband and I. A month after starting this diet, I was back to my Jabz boxing workout. I wanted to get my strength back and I finally had the energy after to work to do so. I used to workout six days a week when I was healthy so it felt so amazing to be back at it. I was ecstatic this “diet” was working for me.
Another major factor in my healing process was limiting stress and letting go of things I cannot control. Stress was the number one factor that got me into this mess in the first place so I knew I had to change something. My husband and I had decided to get married so we could start the adoption process and not put so much effort/stress into trying to conceive. We also bought a cozy vacation cabin in the quiet woods so we could escape the busy-ness of our everyday lives. Both of these milestones have been a godsend to my health and happiness
What resources have you used on your healing journey so far and how did you find them?
Facebook support groups have been an incredible source of information for me. I have been able to connect with like-minded people who want to help each other out. It is here, that I learned about Dr. Amy Meyers. Soon after, I discovered Mickey Trescott’s incredible cookbooks, this blog and Dr. Sarah Ballantyne. I am so thankful for all the information I have right at my fingertips. No need for costly, timely visits to the doctor. There is an entire online community excited to share recipes and lifestyle modifications. I recently learned about Shinrin Roku, the Japanese art of ‘forest bathing’ through a Facebook group called Natural Solutions for living with Psoriatic Arthritis. Unknowingly, I have been practicing this at my cabin and the effects have been monumental in my healing process.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
As I previously mentioned, both rheumatologists wanted me on Cimzia, which is a monthly injectable biologic. Since I could not tolerate it, I told my doctor I was going to explore non-pharmaceutical options before trying another biologic. The commercials for these medications that you see on TV are extremely misleading. Everyone looks so happy to be on them. Even as a pharmacist, I did not realize all the debilitating side effects that come with these medications, including cancer. The rheumatologists never once recommended diet modifications. They only told me I needed to stop doing the active things I enjoyed doing. This was not me, so I decided to take my healthcare into my own hands.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
While this has been the most trying time of my life, I am so thankful it all happened. My parents always say ‘the Lord works in mysterious ways’ and they are right. I now appreciate the little things in life and do not take my health for granted. A simple jog in my neighborhood with my dog makes me smile. A hike up a mountain has brought me to happy tears. My Jabz for Women community gives me confidence and strength. Cooking delicious AIP meals with my husband is perfect bonding time. My photography hobby gives me something interesting to focus on. Being an auntie to my adorable little red-headed nephew brings me so much joy. My peaceful cabin in the woods is the best thing ever. My greatest joy is being madly in love with my best friend and support system, my husband. I am fortunate beyond words to have an incredible circle of family and friends. Life IS good :).
Would you like to share your Story of Recovery? Let us know by filling out our interest form.