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four people working to create a wholistic view of an RA patients symptoms

It Takes a Village

I just lay there, at a complete loss of what to do.

“DAAAD!” At least my voice worked.

“DAD!! HELP!”

I am a pretty quiet person so the fact I was yelling first thing in the morning meant there was something very wrong. My father came running.

“I can’t move!”

“What do you mean, you can’t move??” A note of panic entered his voice.

“Everything hurts. I can’t move. I’m not paralyzed but I’m in too much pain to move.”

This was the day, in June 2010, my Rheumatoid Arthritis flared for the first time.

The start of my RA journey

I had been experiencing pain for a while but the magnitude of this flare was new to me. About six months prior, I experienced an inflammatory injury in the wrist. I had surgery and physical therapy to correct it but soon other joints began to pain. At first, we thought the elbow and shoulder were compensating for the weaker wrist but I experienced pain on the other side of my body. My orthopedic surgeon referred me to a rheumatologist (who sucked)…

It was 9 o’clock on a Sunday morning and my father called the only other rheumatologist we knew (who is my current doctor). He didn’t see me but he immediately ordered a prescription for Prednisone and told us to come into the office first thing the next day.

With that, I was officially diagnosed with Rheumatoid Arthritis. I was now labeled and began my story with this autoimmune condition. That was that, I thought. Wrong. That was certainly not ‘that’.

Assembling a RA healthcare team

Soon, I was seeing more specialists than I could track. I found out quickly RA did not just only affect my joints. Weird phenomena (like ulcers or eye discomfort) cropped up as my condition warred on. I couldn’t just rely on my rheumatologist. While he is an extremely knowledgeable man, there were symptoms and factors that only a specialist (in whatever field) could make sense and treat accordingly.

Often times, specialists are quite specific and pigeon-holed in their field (not always!!). I am very lucky that all my doctors look at the big picture. We go over all my symptoms, even the ones that would not necessarily concern them, all my medications and all the other specialists I’m seeing. They look at all the information then formulate their plan. For example, my ENT surgeon reminded me that because of the RA, my turbinate bone in my nose will continuously swell and I would need more frequent scrapings to keep my nasal passages open.

RA requires full-body attention

Autoimmune conditions each have a set of distinct symptoms that separate them. However, as I’m sure you’re well aware, any inflammatory condition does not just affect one part of the body. It’s like asking the grass to grow in one small patch instead of the whole lawn: impossible. RA is a full body sport.

It takes a village to work out this thing we call Rheumatoid Arthritis and, hopefully, each of our doctors listens and treats accordingly and not the single symptom itself.

How many specialists do you see? Do they all work together? Let me know in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mylady13
    7 months ago

    Did they find RA in your blood?

  • Monica Y. Sengupta moderator author
    6 months ago

    Hey @mylady13!

    Thanks for commenting on my article. I am actually sero-negative so my bloodwork is all normal.

    It throws us off once in a while but I am thankful my doctors all agree I have RA!

    Best, Monica

  • Lawrence 'rick' Phillips moderator
    7 months ago

    Hello myleady13. Yes and no RA can be detected in blood samples. So here is why the answer is deceptive. Some blood tests can show that RA may be present. In my case one of the tale tale blood tests was The Rheumatoid Factor Test (RF Test). Mine was positive but that by itself did not say I had RA. Instead it was a clue.

    Other blood tests work the same, and yes several people who have RA have tests and they do show positive indicators.

    Now here is the other side of the argument. Not everybody who has positive test results has RA. Likewise people who have no positive test can be diagnosed do have RA. So it can be a mixed bag.

    Hence the answer is yes and no. The best way to know if you do or do not have RA is see a Rheumatologist. They will likely run some blood work and they will do an in person examination. It is only with the assistance of a trained doctor that a person can be diagnosed.

    i hope that helps.

  • Monica Y. Sengupta moderator author
    6 months ago

    Hey @mcadwell!

    Thanks for commenting on my article. You know I always appreciate you sharing your story with me/us!!

    I am sorry your experience with doctors is less than favorable. I know many community members face the same frustrations! You would think doctors who are familiar with chronic illnesses would be more empathetic to the invisible symptoms and work with them instead of ignore them!

    Thank you again for commenting!! ~Monica

  • mcadwell
    7 months ago

    My ANA results always came back negative. It took a few weeks shy of 17 years to get an RA diagnosis because all 6 rheumatologists I’d seen in that time frame said the pain was in my head, blah, blah, blah.

    After refusing my request for x-rays, my last rheumatologist told me, “Since you don’t have an auto-immune disease, I have to say the pain is all in your…” and stopped him cold.

    I yelled, “WHAT DO YOU MEAN I DON’T HAVE AN AUTO-IMMUNE DISEASE!!! I’VE HAD VITALIGO SINCE I WAS 4 YEARS OLD AND IT’S IN MY CHART YOU F***ING MORON!”

    Vitaligo is an auto-immune disease that affects the melanin in the skin. And, sure enough, it was the first illness I’d listed in that paperwork a new patient is required to fill out.

    Apparently none of the rheumatologists made the connection that vitaligo was an auto-immune illness because they weren’t dermatologists.

    All of a sudden my ANA became positive, I got my x-rays, and I got my diagnosis.

    This has severely made me distrust doctors. Because none of them used everything in my chart.

  • Lawrence 'rick' Phillips moderator
    7 months ago

    This is goign to be difficult to believe but I see 16, yes 16 doctors at least once a year. Now obviously i have a few lined up for diabetes, and a few overlap, like I have a hip replacement doctor who does not do ankles and feet and a foot doctor who will not do ankles.

    Things get complicated sometimes in Rickland. Now do they work together? Heck no. I would like to get them to work together but honestly getting a cardiologist and a foot docotr to work together is a little out there, unless of course they connect through my new vascular doctor, now that has possibilities.

  • Monica Y. Sengupta moderator author
    7 months ago

    They should since the vascular doctor technically bridges both, right??

    Hopefully, them not working in tandem hasn’t caused any issues?

  • Monica Y. Sengupta moderator author
    6 months ago

    Hah! Rick, they’re afraid of my dad too! 🙂

  • Lawrence 'rick' Phillips moderator
    7 months ago

    No serious problems, they are as scared of my wife as I am. So long as we are both scared of her, nothing bad happens.

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