Pre-Diagnosis Symptoms

In hindsight, it’s easy for me to look upon the years leading up to my diagnosis and see my body’s cries for help. They are so clear today, but I missed them completely at the time. 

I was having a myriad of digestive troubles.

The joint pain that I had been experiencing in the balls of my feet and in my right knee at the time of my diagnosis were easily brushed off as overuse injuries from long distance running. I started running and competing in 6th grade cross country and track. By my junior year of high school, I sometimes wondered if something was “off” in my system. In fact, I vividly remember getting seriously fatigued at the age of 17 from just walking up a couple of flights of stairs. I thought, “Why are my thighs so tired from walking up these stairs, I’m an endurance athlete for goodness sake!” I also remember two occasions in high school when my fingers swelled up during an afternoon cross country practice to the point of being unable to close a fist. When it came time to go to college, a few schools offered me athletic scholarships for running, but I refused them because deep down I wondered if my body would last even a semester under a competitive load at that level. I ended up walking onto the cross country team at my university, and though I was able to compete, my symptoms increased. I developed intense pain and stiffness in my right knee after long weekend runs, and the dull throbbing pain in my feet hung around like a bad dream. I lasted three semesters.

I didn’t know it at the time, but the year or two before diagnosis, I was experiencing a lot of fatigue.

Even though I could muster up the energy to workout almost daily, I didn’t do much else. I would get overwhelmed washing and chopping vegetables to cook for dinner. Standing for long periods seemed like a lot. There were days I would move from bed to the couch, getting up only for meals and bathroom breaks. Compared to the energy I have now, I was very fatigued… but I didn’t have that reference point at the time.

Another symptom that I had, but often overlooked, was my history of chronic teeth problems. Seems like for years I would go to the dentist, and the technician would look on me with pity and say, “poor thing, you just have bad teeth.” (By the way, after 2 years on this diet, my dentist tells me I have great teeth every visit… SHAZAAM!) My gums were bleeders! It was a common occurrence for my tooth brush to be tinged red after brushing. The flossing and tooth picking were definitely bloody. Also, I had extremely sensitive teeth. I usually blamed this on whitening tooth paste, which in all honesty could have been a contributor, but the level of sensitivity I dealt with was severe. When I had my teeth cleaned, I would literally stream tears from the pain… it was rough! Further, I had a root canal at the age of 18. To top it all off, my jaw was constantly popping, grinding, and cracking. It caused me major discomfort.

Getting a Diagnosis

Eventually, a few months before my actual diagnosis, the pain in the balls of my feet became so troublesome that I decided to seek out help from a podiatrist. If you have rheumatoid arthritis, then you know that RA pain is a savage motivator. What did it feel like? It hurt! A lot! Every step I took downright hurt. I couldn’t rub it away (that just made it worse), I couldn’t walk it away, run it away, sleep it away. I could ‘pain killer’ it away, but I didn’t want to do that. I wanted to know what was wrong with my feet! Why did they hurt all the time. It was a dull, heavy, achy, incessant pain in my balls of my feet.

It was aggravated by the weight of the covers on my bed.

It hurt early in the morning.

It was there when I sat at the table to eat.

It prevented me from being able to put any weight on my toes.

It’s sad but true: RA pain is the kind of pain that will bring you to your knees begging for mercy.

So, back on point, the pain was enough that I took my totally broke, newlywed, pregnant, college student self to the podiatrist for some help. Unfortunately, my experience at the podiatrist was really negative. In fact, I get a lump in my throat just writing about it. I’m not going to delve into all of the details of this appointment here, because I wrote about it extensively in OK With RA: Lessons Learned Along the Way. However, I will say, by the end of that appointment, he seemed very confused about the fact that I had joint pain in my feet. He regretfully informed me that the best he could do was fit me with a pair of top-of-the-line orthotics that he apologetically did not believe would have any effect on the inexorable pain I was experiencing. I declined, and walked out of his office with tears streaming… I cried all the way home.

WHAT WAS WRONG WITH ME?!?

The pain in my feet persisted in varying degrees as the weeks went by. Eventually new pains began rearing their ugly heads. These new pains migrated up and down my arms. Sometimes they would stop and settle in my wrists for a few days before up and moving to my elbows. After a few days there, they would shift to my shoulders. Finally, I went back home for a final visit with my folks before my precious baby girl was to be born. While there I went to my dad, a cardiologist, with a list of symptoms and complaints. He immediately gave me a rudimentary diagnosis of “Migratory Arthritis”. Then he called in a favor with the best rheumatologist in town, and a few days later there I sat in her office. 

Similar to the visit with the podiatrist, my appointment with the rheumatologist was equally frustrating and even more disheartening. I walked into that office with high hopes of finding help for what ailed me. I was dumbfounded by what I heard her “the best doctor in town” say to me that day. To put it in a nutshell, she knew that RA was joint inflammation (uh-huh, pretty sure I had a grip on that one), but she, the expert in the field, had no concept… not even a guess… at what caused RA to happen, or how to make it go away. Further, she offered to put me on a drug costing $100 PER WEEK that would essentially render my immune system impotent, cause a very long list of undesirable side effects and liver and kidney damage, and generate untold deformities in any future children I might have if conceived while on the drug. What was the benefit you might ask? Well, no one would be able to see my join problems. 

So let me just lay this out right here.

RISK OF TREATMENT: No immune system (high risk of infection), horrible side effects (nausea, vomiting, skin reactions, low blood pressure, trouble breathing, vision problems, numbness, swollen hands and ankles, shortness of breath, and HEART FAILURE just to name a few), liver and kidney damage, baby deformities if conception occurs, and RA is still progressing in my body… just at a slower pace. 

BENEFIT OF TREATMENT: No one will be able to see that I have swollen joints, decrease in joint deformities. 

Well that risk/benefit assessment took microseconds for me to determine. I was utterly uninterested in the conventional treatment of rheumatoid arthritis. I would seek help from someone, anyone, who at least had a guess of what this disease was all about and how to slow / stop it’s progress honestly. 

Life After the Diagnosis

Immediately following the dreaded diagnosis of rheumatoid arthritis, I went through an honest-to goodness season of mourning the loss of my health.

Sadly, it felt like I was loosing more then my health… it felt like I was loosing my very identity.

I had always seen myself as a healthy, active, positive person. I had majored in Fitness and Physical Education, I pictured myself becoming a coach, exercise instructor, trainer… something along those lines. I began to wonder who would ever take exercise and fitness advice from the lady with deformed hands who can’t walk straight. I began to question who would I be if I wasn’t this person I thought I was.

When the bulk of the sadness finally passed, I began the arduous task of learning everything I could get my hands on about rheumatoid arthritis. I read the few books that were available at the time. I cut gluten out of my diet. I started going to an alternative medical clinic. As time went on, I tried multiple diets, had exhilarating successes, and heartbreaking failures. I was on and off of supplements and natural treatments. I ended up having five more wonderful children, and I continued living life as a stay-at-home, homeschooling mom of a large family. Through the years, just as the doctor promised, I have experienced joint damage throughout my body. Most noticeably in my hands and feet, but in other places as well like my right knee, left collar bone, and left wrist. 

About two years before the time of this writing I decided to try the diet I promote on this website . . . it was truly a game changer in my RA journey, allowing me to have less inflammation, begin regular exercise, and sleep better at night. Another very positive shift in my life happened just a few months later, when I was unexpectedly reunited with my birth family. I had been adopted at 10 days old, and I was able to know and meet my family of origin, I believe this positive experience had a beneficial effect on my health as well. 

This website and blog depict the ebb and flow of my choosing a medication free approach to living with rheumatoid arthritis. It’s my story, my thoughts, and my advice for anyone who isn’t interested in the conventional approach… or for whom the conventional approach does not provide the relief of symptoms they are seeking. I know that there will be many who do not understand or even respect my choices. Simply put, this place is not for them. Everyone should have the dignity and the freedom to make the choices they believe are best for themselves, their own future, and their own well-being. I look forward to sharing the rest of my journey with you!