My Sero-Negative RA Story

How blessed are those being diagnosed with RA today! Medical knowledge has grown so much, marching forward with better understanding and the promise of better care.

Increased seronegative awareness

So many treatment options, several with the possibility of remission.

It is now possible to be seronegative and receive a diagnosis and treatment. Recognition and education exist within the medical community of this auto-immune disease and individual care is given with that in mind.

Can I have a normal life with RA?

My rheumatologist told me that now few people reach the later stages of RA. The massive crippling and body-wide involvement rarely exists.

I am so happy for those who have been spared my journey. Yes, the disease is still there, impacts life, reduces the quality of living, and inevitable pain.

However, it is possible to have a relatively normal life with disease management, at least for much longer.

These things have not always been true.

Were there many RA treatments in the past?

There was a time, less than 50 years ago, when an NSAID and muscle relaxer was the only treatment.

My hope is for the continued growth of disease management, increased understanding of the medical condition, and better education/acceptance from other non-medical persons, and support within the workplace.

I am very excited about these changes and hope for a better life for others.

Telling my RA journey

My story has been one very different.

I like to think of myself as a pioneer breaking ground for better understanding.

One of many who has helped our doctors, research, and the general population learn from and connect with us. Progress, still much more to make. At almost 63 years, there is a whole population of RA patients like me who have struggled with this disease, lost jobs, been impacted by negative attitudes, and felt isolated in our pain.

Is it RA?

The first time I was evaluated for RA, I was 18. Seronegative, no treatment, dismissed as a complainer.

The second time I was tested at 24 years. Still seronegative.

HOWEVER, the rheumatologist did admit the symptoms were so consistent with RA that it was impossible to ignore the signs, lab tests withstanding. I was given a daily prescription of ibuprofen and a muscle relaxer for the bad days. He also sent me to physical therapy. What an experience that was!

Strength training, oh the flares this caused! After a year of treatment, my rheumatologist dismissed me from his practice saying he could do no more for me.

Managing RA's mental and physical impact

RA is progressive when untreated. For the next 14 years, I lived with a lot of stigmas and lost my job twice (major problem for a single parent!) My “condition” was labeled attention-seeking, psychosomatic, and even Munchausen's syndrome.

It took me years to have these labels removed from my medical records! I was told things like “to push through”, “mind over matter”, “complaining only makes it worse”, “all in my head”, “causing the problem myself”, “whiner”, “big baby” …. even when I did not discuss my challenges with others.

My mom spread the news, most made up from her “observations” and subjective thoughts. Members of my family made fun of me, pushed me away, and openly told me I was not welcome at get-togethers.

Consequently, my two children grew up without knowing most of my family. I moved us away from all the negativity and the stigma placed on me. I was hoping for a better life, friends who cared, and that the emotional hounding would stop. During this time, I took OTC ibuprofen and developed a body-friendly exercise regime.

I decided to not even mention these symptoms to my new doctors. Figured if there was a “real problem”, it would show up on the tests.

The emergency room

One morning, when I was 38, I woke up and my entire body was frozen. My daughter had to help me sit up and navigate my way to the bathroom. She then took me to the emergency room. This was very frightening for me.

What was going on? Why couldn’t the doctors find the problem?

I was diagnosed with muscle strains and spasms. My doctor prescribed ibuprofen and a muscle relaxer, referred me to a neurologist, and sent me to pool therapy.

For the first month, all I could do was sit in the water incapable of doing any exercise. A primary thought was fear of losing another job, being able to provide for my children.

I hated that my daughter needed to go grocery shopping and do the cooking, my children took over household chores, that my daughter had to be the one to pick up her brother from school/practice, and my involvement in my children’s lives dropped to zero. As a mom, that cut deeply into my heart.

No RA diagnosis, but progress

The visit to the neurologist was a major breakthrough. She “saw” the symptoms and aggressively began treatment. Again, no RA diagnosis.

However, she did diagnose me with fibromyalgia, chronic muscle spasms, and migraines. My neurologist warned me fibromyalgia was not widely accepted in the medical community, so be aware of how other doctors could possibly diagnose this as “psychosomatic”.

Having been down that road before, it was probably about 10 years before I mentioned this diagnosis to anyone.

However, I was receiving some treatment, the pool therapy helped immensely, and I pulled out of this major flare.

Unable to drive, I was blessed with a friend who provided rides for me to and from work. Many days I would collapse in exhaustion and sleep on the way home.

She and her husband helped me with my children, treating them like their own. So thankful for their compassionate, caring hearts.

Rheumatoid arthritis impacting career

Rather than lose another job, I switched to another one requiring me to move.

I was blessed with another doctor who made the fibromyalgia diagnosis and an early arthritis diagnosis.

He told me my symptoms were those of RA and Lupus. However, the tests didn’t support this. He treated me for these anyway, except for the disease-specific meds.

Mobic was a life-changer. Physical therapy continued.

My doctor saw me every two months and helped me find ways to manage. I continued seeing a neurologist. I was well enough to begin doing some things I enjoyed, even joined a bowling team (that ended up being a flop, but a fun adventure).

During this time, my symptoms continued to advance and there was physical evidence that RA/Lupus was developing.

Still no diagnosis …. I was seronegative. My doctor gave me my first FMLA form. After four years, my employer gave me a choice of resigning with a reference or being fired. My supervisor was tired of me falling asleep in meetings and having conflicting doctor appointments/therapy. This was a major step back in regard to treatment.

Medical retirement due to RA

During the next four years, I was in-and-out of medical appointments and the hospital.

My neurologist provided my primary care with monthly visits. Diagnoses of fibromyalgia and intractable migraines.

This neurologist also told me my symptoms were those of RA and lupus.

However, this diagnosis could not be made since I was seronegative.

He tested me monthly hoping the markers would be there. I worked under an FMLA form that continued to evolve with more work restrictions and accessibility modifications.

I had one boss who took my FMLA as a personal challenge. She called my doctor demanding answers, at one time refusing to allow me to go the hospital.

When I returned to work, I was placed on a ridiculous schedule with additional responsibilities that I could not physically manage; I had more major flares, severe migraine episodes, hospitalizations.

I had to transfer to a different work site.

The point came where I had to use a rollator at work or fall. My employer considered me a safety risk. My neurologist believed my body had reached a physical limit.

Working was making me very sick, causing regular hospitalizations. He forced me to medically retire at 52, 11 years ago. I was devastated. My job was satisfying and enjoyable.

Each time I had a job loss, I went back to school to beef up my resume and open doors to employment less physically demanding.

By this time, I had acquired two doctorate degrees in mental health and crisis work. I was very skilled in my profession and often able to help others that were considered medically treatable. Insight from my own struggles?

My heart still grips in pain when I see others in need and cannot help them.

An RA diagnosis, at last

After retiring, I found a rheumatologist who understood seronegative RA/Lupus.

After a two-year observation period, he diagnosed me with both at 54.

My immunity levels were critically low and the RA/Lupus was tearing through my body. They had begun to affect my organs. I was in severe pain.

At one point, my disease-afflicted gall bladder had to be removed.

Afterwards, my abdominal cavity filled with fluid. Impossible to explain how painful this was and how it affected my body function. The ambulance rides to the hospital because I was passing out.

The abdominal fluid was tested and found to be one associated with RA/Lupus inflammation. The RA/Lupus diagnosis was confirmed and no longer considered a “possibility”.

I was hospitalized three times for post-surgery treatment, especially for the intense pain and nutrition/fluids. No infections. My surgeon continued to provide follow-up care.

One of the most wonderful, caring doctors I have ever had. He was knowledgeable about RA/Lupus and helped me develop some coping strategies, sent me to occupational therapy. After researching 30+ years of my medical records, my RA/Lupus was given a retro-active onset date to age 24.

A caring RA support team

Since then, I have found an amazing team of doctors (12). They communicate with each other and share information.

All of them are knowledgeable about RA/Lupus and other autoimmune diseases. They keep a close watch on my symptoms and provide immediate treatment when necessary.

My rheumatologist tried me on several infusion meds and cell-cept.

My body had strong reactions and overtly rejected them causing life-threatening symptoms. My rheumatologist ruled out any type of DMARD or other treatment with complex meds.

This was a joint decision made with my other doctors. My adrenal gland no longer functions. I receive some prednisone as a hormone substitute. My doctors increase that dosage when I flare or am very sick.

I have been told by several of my doctors that I am past the point of disease intervention. Their focus is to provide support during the rough patches. I have blood draws monthly and see each of my doctors regularly, most of them at 3 months, or monthly if flaring to address acute symptoms. My rheumatologist told me he rarely sees anyone who is this disease-compromised. Early treatment prevents others from reaching the later disease stages.

Seronegative RA is my story

As I live with the effects of non-treatment/early intervention, I am grateful most RA/Lupus patients will not suffer as I have. Those times my symptoms flare, I pray for those who also are on a journey with this disease. I find hope not in my own situation but in the knowledge there is help, acceptance, support for others.

No one should have to suffer the emotionally and physically painful journey that has been mine. All because of a single test that lacked the markers, seronegative. My story is uniquely mine. However, it is also the story of many other seronegative warriors trying to manage life without a proper diagnosis, medical help, or family support.

Lives forged in fire, strengthened by knowledge, self-care, and sharing this journey with others. Pioneers blazing a pathway that others may suffer less and have a better quality of life.

What a blessing to endure and give this gift to others.