Color Coding Symptoms

Color Coding Symptoms

“Where did this symptom come from”??? Raise your hand if you have thought this in the last week… maybe even yesterday or today!…

When I was growing up I rarely went to the doctor outside the annual checkup and dental cleaning. I rarely got sick (except for the occasional ear infection) and was not on any medications. I was lucky that I was so healthy. Too bad toasting my good health didn’t work!

The typical RA symptoms

Since my diagnosis in 2010 I see my rheumatologist regularly and a smattering of specialists for good measure. However, I rarely see my primary care provider (PCP) or those latter doctors because I figure any side effect or symptom is due to my Rheumatoid Arthritis, more specifically the Prednisone. (No, this is not a sequel to my steroid article a few months ago!) The motto of my life (aside from “embrace the nap” and “sloth on hypnotics”) is “blame the prednisone” because usually the Prednisone is to blame: weight gain, acne, insomnia, anxiety, dry mouth and eyes, etc…Increased appetite? It’s the Pred, sore tongue…yeah, the steroids.

But what about the other symptoms like anemia or balance issues or even nausea?
I mean, I could blame it on the Prednisone or the RA but my guess is these are brought on by something else.

“Organizing” my symptoms

I am an “organized” person. I make lists and color code my notes. I use Post-Its like they’re going out of style. I keep multiple journals and charts and yes, one of them is a symptom tracker. It’s great for finding patterns based on day and/or activities but it doesn’t necessarily tell me where the symptom comes from. Do you know what I mean?

The problem with a lot of my symptoms is they overlap with one another. One day I’m nauseous because I didn’t eat enough with my medications. The next I’m nauseous because the Methotrexate messed with my period and it’s irregular. Wouldn’t it be nice if I could further classify my symptoms and say “this neon pink is menstrual nausea and nothing to worry about” or “this type of nausea is bright fuchsia and actually indicate an ulcer: RED ALERT”.

Often times I feel a different type of stiffness in my joints depending on a variety of factors. Instead of just ticking off the box “pain” which could mean anything really. Wouldn’t it be nice if I could tab further and say “This blue with neon orange polka dot pain means I climbed too hard and I accidentally PO-ed my fingers” or better yet, “this wavy pale yellow over a puke green base means I am about to derail into a massive flare: START YOUR FLARE ACTION PLAN”.

“What’s wrong?”

“I feel bad.”

“Why?”

“I don’t know! I just do!”

OR

“Do you think if I knew I’d let myself feel this way??”

Life would be so much simpler if I could keep a binder with inserts, colors and patterns that identified each symptom. Even a simple Venn Diagram with a small assortment of ailments is better than shooting blind with 10 or 15 possibilities. But, alas, Rheumatoid Disease (any chronic illness, for that matter) is not easy and with all the other issues we deal with it makes sense that trying to figure out my ills is just as hard.

Truth is, the only thing I can do is run to my doctor and yelp “HELP!” Hopefully, we can figure out the causes together and nip them in the bud.

Do you keep track of your symptoms? How? Let me know in the comments!

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Comments

View Comments (5)
  • lovefrompatrick
    1 week ago

    Hi Monica – I’m Patrick in North Carolina. I was once on the preds and had to stop it due to many terrible reasons. It also super raises your sugar levels to a point where you can become medical diabetic. I decided on Embrel injections and diclofenac. The embrel injections once weekly along with diclfenac twice a day has helped big time with little to no side effects. I recommend talking with your doctors about my plan and see if that will be your answer as it is mine. let me know.

  • Antonia Maritima
    1 week ago

    tckrd
    I have been prednisone for 8+ years…the highest dose 80mg (for scleritis–a painful eye condition that didn’t respond to more typical ophthalmic treatments). The lowest dose was 5mg, and that’s when I was on Enbrel.

    Because I’ve had issues with cellulitis (a potentially dangerous skin infection) for the past few years, I’ve not been able to use a biologic medication (like Enbrel). My prednisone dose is 15mg now, and it goes up when I have a flare.

    I have had many too many of the side effects: I became diabetic, and am now insulin-dependent. I bruise easily and my skin is thin and paper-like. I have insomnia that requires *more* medication. I sweat more. When I am changing doses, my mood changes rapidly.

    Besides the many awful side effects, prednisone is the best anti-inflammatory medication. It works better than any type of non-steroidal anti-inflammatory (nsaid) medication. Ongoing research continues to try to develop a new anti-inflammatory drug that doesn’t include the side effects. They’ve not yet been successful.

    (it’s sort of like diphenhydramine–Benadryl. It is the best allergy medication, but the main side effect–sleepiness–make it a less than optimal choice. There are now many allergy medications, but none work as well as Benadryl.)

    Now that the cellulitis has been treated, my rheumatologist and I both hope that I will be able to resume with a biologic–probably Humira (as Enbrel has stopped being effective), and then we will be able to reduce the prednisone dose again.

  • tckrd
    1 week ago

    I am curious. Other than the first year I have not taken prednisone because of the problems it creates. This is not because my RD is well controlled, it is because my rheumatologist is so concerned about those side effects. I do get a steroid shot every once in awhile to help with extreme pain. This is my curiosity. Why does your rheumatologist recommend using it. Maybe I should talk to my rheumatologist about using it. I would love to not be in as much pain and able to do some other things

  • Lawrence 'rick' Phillips
    2 weeks ago

    Maybe it is “Red Robin’s Egg Royal Salmon Scarlet Screamin’ Green”

    Tell your docotr that color next time and look at the reaciton.

  • Monica Y. Sengupta moderator author
    2 weeks ago

    Oh gosh..If I can remember that myself!! I now want a shirt or flannel pants with this pattern.

    Thanks Rick!

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