Progression of my Autoimmune Disease

Progression of Symptoms of Autoimmune Disease from Childhood to Present

The following is a concise list of symptoms experienced throughout my life. Many of these symptoms should have been flags to consider an autoimmune disease but no one was thinking along those lines at the time. I have a hypothesis that sugar, gluten, alcohol and possibly other foods begin the inflammation process when we are children. If we could change our behavior at an earlier age we could potentially halt this disease before it ever gets started. But that is tough in a world that lives off pizza, burgers, fries and an endless supply of cookies, muffins and cakes at any event.

My childhood signs of disease

  • Gas
  • Bloating
  • Pelvic pressure
  • Foot pain
  • Fatigue
  • Chronic sinus infections
  • Allergies

My young adult signs of disease

  • Involuntary, persistent, eye muscle twitches
  • Diarrhea
  • Low iron (if you compulsively chew on ice you have low iron)
  • Low Vitamin B6 & B12 (not caught until much later)
  • Low Vitamin D (not caught until much later)
  • Joint Pain in my hands, wrists, ankles, and feet
  • I could always pop my hip joint in & out, but now it happens during basic leg left exercises and I do not control it.

Diagnoses discovered in my 40’s

  • Plantar Fasciitis (I did not wear high heels)
  • Inverse Psoriasis
  • Skin allergies to miscellaneous metals-tags in clothing are irritating now
  • Bacterial Overgrowth (now commonly called Small Intestine Bacterial Overgrowth, SIBO)
  • Ruled out celiac, lactose, and fructose intolerance
  • Thyroid nodules detected but no medication required based on bloodwork

Behaviors that may have made the disease worse-peaked in 40’s

  • Alcohol daily & binge drinking
  • Sugar after almost every meal
  • Starch-based diet (potato, pasta, grains)
  • Taking too much magnesium
  • Poor marriage and my response to the marriage stress
  • Stopped working to care for family and my response to stress from my loss of purpose

The Final Trigger—Injury or Menopause, 2014

  • Injured Tailbone March 2014
  • Sprained Ankle March 2014
  • Significant nerve pain from feet to fingertips
  • Severe back pain
  • Diagnoses after many tests, doctors, chiropractors, and physical therapists:
    • Sacroiliac joint out of alignment
    • Mild Ischiofemoral Impingement Syndrome (two hip bones rubbing together & causing pain)
    • Peritendinitis of two foot to ankle tendons (tendon sheaths inflamed)
    • Thinned Anterior Talofibular Ligament (outside ankle ligament)
    • Intraosseous Lipoma in Calcaneus (asymptomatic bone tumor & have consistently been told not a source of my pain)
    • Osteochondral lesion along medial talar dome (injury or small fracture of cartilage)
    • Disc bulge/protrusion in my back (not large enough to do surgery but could be causing some pain)
    • Chronic nerve root compromise to foot (but nerve test results do not match the disc bulge to explain the nerve pain)
  • Last period was October 2014, just before I turned 50.

Diagnoses discovered in my 50’s

  • Started hormones in March 2016, which provided immediate relief to my state of mind. Transitioned off in October 2018 and that may have made me more susceptible to bacterial/viral infections that followed. Reconsidering low dose estrogen.
  • Mild Gout (more on gout later)-started Allopurinol but stopped after bunion surgeries and no longer need it.
  • Two bunion surgeries in 2018 and I’m so glad I tackled this.
  • Tackled some preventive medicine strategies in 2018. CT Calcium Cardiac test, bone density baseline, colonoscopy, Mona Lisa laser of vagina to stop atrophy from menopause (although wonder if caused lichen sclerosus), nerve testing before bunion surgery, and thyroid ultrasound screen.
  • Psoriatic Arthritis (after several rheumatologists)-started Humira January 2016 which caused headaches, tried Enbrel next, but not consistent (insurance wouldn’t cover Enbrel) until Humira in August 2016, which improved symptoms but still had hand and foot pain flares. Switched to Taltz November 2018 at age 54 but after 3 doses began a cascade of bacterial and viral infections. See November 2018- 2019 of my Food, Exercise and Symptoms Diary for details.
  • Genetic Testing. Because I was taking immune suppressant I checked BRCA gene (negative) and cancer screening (negative) because my sister carries a gene that puts her at known risk for some cancers. I previously tested the following genes: SLCO1B1 Statin Induced Myopathy and I am T/T-normal statin metabolizer, APoE and I am E3/E3-most common genotype, Factor II and Factor V Leiden and I am -/- for both which is normal risk of clot formation, MTHFR and I am 677C/T which is considered normal for folate metabolism, although report said to consider nutritional therapy of my homocysteine levels are elevated. No one ever talks about this but I am running across MTHFR more and more so this may be worth exploring later.
  • Disseminated Zoster. Stay tuned for the summary on this. Treating summer 2019.
  • Lichen Sclerosus. Stay tuned. Treating summer 2019

Still Unexplained

  • Hormones: Where they protecting me?
  • Food: The wild frontier of my microbiome. My early SIBO was a big flag that no one caught.
  • Alcohol connection. I’ve cut back but have not removed entirely.
  • Joint Pain connection to all of the above.
  • Skin connection to many of my issues is not explained-PsA, Disseminated Zoster, Lichen Sclerosus.

For more information about the context of the development of my psoriatic arthritis, you can read the narrative story of my childhood, early disease development, the discovery of psoriatic arthritis, and the transformation that happened during menopause. And here are links for more information about my diet, the elimination protocols I’ve tried, and a log of the medications and supplements I’ve tried.

I truly hope this accounting of the progression of my autoimmune disease will connect with others and with someone doing research on the subject. Does anyone share my disease progression experience? What triggered your disease? Did anyone else discover their psoriatic arthritis as they went through menopause? I hope sharing this information can help someone find a cure.