Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

Can Your Calendar Get You to Better Wellness?

Remissions and Flare-ups.  All of the information out there on autoimmune diseases refers to remissions and “flare-ups”.  A flare-up by definition insinuates that a remission will follow.  The text books speak about a flare-up as if it will be days-to-weeks…  my reality was not of days to weeks, nor was it weeks to months.  My reality was years.  Is there any way to prevent a “flare-up”?  Or at least lessen the “flare-up” to get to the remission faster?

First it helps to understand what a “flare-up” is.  In my opinion, a “flare-up” is comprised of three phases:  the lead-in, the acute phase, and the progression to wellness (the Convalescence phase).  In order to get to a remission faster, I have to figure out how shorten the acute phase or the convalescence phase.  In order to avoid the whole thing, I need to catch the flare-up in the lead-in phase.

What is the best way to arm yourself?  Information and observation.  With the right information you may choose to do things a bit differently and you may feel you have a bit more control over your illness.  With astute observation, you may be able to tell early on when your “apple cart” is beginning to be tipped.  Any of us who have been doing this a while can tell you, life becomes all about balance!  Keeping that apple cart upright and steady!

One thing that helped me to gain information as well as to make astute observations about my illness was a symptom tracker journal.

Let me preface this with a warning.  Sometimes, when a person is working on tracking symptoms, they can get a bit excessive.  I urge you to not let the gathering of information become an obsession.  I actually think the healthiest thing to do for your mental health, is to use the tracker for a predetermined period of time.  If you are, as yet, undiagnosed, this is a great time to use a symptom tracker.  If you are trying a new treatment, also a great time to use a symptom tracker.  But there should be a start date and a stop date.  “I will use a symptom tracker until I get a diagnosis”.  Or “I am starting a new medication on January 15th and I will track for the first 4 months.  (You and your doctor can decide the time-frame together).  If after 4 months your symptom tracker shows that there is good progress on the new treatment, you can let it go and just focus on feeling better!  If, on the other hand, your symptom tracker shows that there is no change on the new medication, then this is a starting point for you and your doctor to make a decision to try a different medication.  I like the tracker for this purpose because I feel it potentially limits the amount of wasted time waiting to see if a new medication is working. 

So, Here’s how it works:

I used a small check-book sized calendar.  Since high daily fevers were a big problem for me, I knew I needed to track this.  Years before getting the diagnosis of Still’s Disease I saw a cyclical pattern to the fevers.  I would start a fever in the middle of the night.  My husband would report that I would feel like I was on fire!  Over the course of the morning and afternoon the fever would slowly start to back down.  Somewhere around 3 or 4 o’clock it would nudge down to under 100 and I would begin to feel somewhat better.  By 7 in the evening I was down to 97.  Now this was very helpful for the doctor to see. 

When someone has a “low-normal” temperature, it is helpful to track how many degrees the body is rising.  Most doctors don’t get alarmed until the body rises over 101.0 degrees; however, that is assuming the 98.6 which is really an “average” of people’s normal body temperature; however, at 101 the person with 98.6 degrees “baseline” temperature has risen 2.4 degrees.  When someone has a “baseline” temperature of 97 then a 101 for that person is a rise of 4 degrees!  That is significant for a doctor to know.

Ok, back to the tracker…  I tracked my temperatures, high and low for each day.  It is a good idea to take your temp at the same two times each day, but then also if you are feeling particularly crappy at a different time you would need to take it again.  I always took my temp at about 6am and then again at 8pm  (if you are doing oral, avoid brushing your teeth, eating or drinking for at least 10 minutes prior to taking your temp).  Those two numbers can be written in black.  You only need to put the times next to them the first time.  (This saves room in the little square on the calendar).  Any temp over 101 was written in red.  My rheumatologist could see at-a-glance (no pun intended!) how my body was reacting overall.  It also made it easier to determine the usefulness of a new treatment.  We could see where I had been pre-treatment and where things were going. 

Also in red would be hospitalizations or trips to the Emergency Room as well as important tests and x-rays such as MRI, CAT scan, Swallow evaluation, etc 

New symptoms were written in green:  for example, “rash” (specify where), “swollen lymph nodes (again note where), “swollen joint” if it is new (and state where).  If the symptom subsides before you see him again, show that on the tracker.  You can simplify by writing “left knee swollen” on the Monday square and then if it only persisted for four days, make a green “x” in the 3 squares following the Monday knee entry.  Pretend the squares all have 3 or 4 invisible lines to write on, and carry the “x”s across the days in the same place in the concurrent boxes.  This will make it clear that the green “x” is a continuation of the Monday entry.

The doctor will be most interested in anything that is “new” or “different” than the last time he/she saw you.  So the fairly normal vital signs were in black, the tests and new symptoms were in green and the hospitalizations, major tests and fevers over 101 were in red. 

Some of us need to track a pain level.  Most doctors and nurses use a zero to ten numbering system; zero is no pain and ten is the equivalent of child birth, where is your pain level for that day?  You can get creative if you need to, you can do a “low” and a “high” for the day, if you need to as I would.  My pain levels fluctuate greatly each day.  I would say today have a low of 3 and a high of 7.  In the little calendar square I would write 3-7.  If you are very honest with your numbers, you will be able to see some trending.  Some of my trends showed up the first week I started tracking; pain 9 or 10 first thing in the morning!  I was unable to walk downstairs safely in the morning!  By 4 in the afternoon my pain would dip down from a 9 to a 7.  By seven in the evening I was at about a 5.  With the tracker, I could see right away that my pain level was predictable! 

Not only was my pain predictable, but the pattern the fevers took became clear pretty quickly!  Those two symptoms are huge!  No wonder I had to cancel so many 12:00 lunch plans!  I never felt well enough until at least 2:00pm!  And even then I was still really suffering!  Armed with that information, I began to plan chores and socializing around my better hours!  “Lunch doesn’t work for me, can you do dinner instead?” or “Would you be able to do coffee at 3pm instead?”  Makes sense, right?

The other thing charting my pain level did was show me that on the treatment I was on, I really did not have much quality of life.  Even though I was on pain pills, I only had about three or four “good” hours with my family and friends.  This journal opened up the conversation with my Rheumatologist that I was wondering if a different medication might work better for me.  He couldn’t agree fast enough.  I had been on the same low dose for years.  He bumped me up without hesitation or judgment.  And this is how my numbers got to 3-7 instead of 5-9.

When discussing pain with your doctor or healthcare provider, one of the first questions they should be asking you is “What level of pain is tolerable for you?” 

An honest answer to the question, “what pain level can you tolerate” is paramount to your treatment plan.  Can you tolerate a 9/10?  Yes, if you gave birth you probably DID!  But should you have to? Not just NO, that would be a HELL NO!  Now, keeping in mind that zero is a lofty goal for those of us living with chronic illness.  Our lives are obviously challenged in a hundred different ways, and pain is one of them.  So what makes a pain level “tolerable” versus “intolerable”? 

Tolerable means that you are able to do the things that are important to you: work, school, see your friends, participate in family events…  You can be distracted from the fact that there is a low amount of “pain noise” in the background. You can deal with it.

Intolerable means that you are not able to participate in your life.  For me, once the pain level hits 7/10 my personality begins to change.  I can interact, but I’m listening more than I’m contributing to the conversation.  I am not happy and don’t smile or laugh easily.  At 8/10 I am no longer fun-loving, easy-going Joanne.  I can get edgy, snarky.  I may even isolate myself.  

And what is a pain level of 9 or 10?  A trip to the Emergency Room!  Severe pain is so intense that you cannot sleep or hold a conversation.  It is difficult to concentrate because the pain is so intrusive that it is all you can think of.  Your mind literally cannot take in any more stimuli and you may reject television or loved ones trying to talk amongst themselves near you.  Bright light may feel like it is physically harming you!  If you are in this type of pain, this is an emergency!  You need to seek help at your local emergency room immediately because there is something very wrong!  If your pain level is that high then one of two things is happening, one, you may require some kind of a surgical or medical intervention, or two, your pain management plan is failing.

The question of “what level of pain can you tolerate?” will serve as the goal for your pain management.  For me, the honest answer of what pain level can I tolerate is a 4/10.  I can manage to live a quality life with mild-to-moderate pain. If I am at a 4/10 I can usually be distracted by good friends, good conversation or a project or task.  

So let’s just state for the record what these numbers represent.  Zero = pain free, 1-2 are mild, 3-4 are mild-to-moderate, 5-6 are moderate, 7-8 are moderate-to-severe and 9-10 are severe.

The second question the doctor or nurse should be asking you each visit is “what is your pain level today”.  Now this is a “subjective” answer, meaning that YOU are the only person that can answer it.  And more importantly, it is what you say it is.  There is no facial expression, no moaning, no crying that needs to “prove” that your pain is real.  Let me say it again… it IS what YOU say

Your symptom tracker will show your doctor trends over time.  If your pain levels were 4s, 5s, and 6s three months ago, then increased slowly over the weeks and are now 8s and 9s, you need to discuss a change in your treatment.  You may require a joint replacement, you may have an infection of some kind, or you may have an injury to a bone, ligament or tendon that is a new injury or perhaps a worsening of your illness.  You may not even be aware of an injury or accident happening, but you may require a full exam and x-rays, CAT scan or MRI to determine the course of action.  When changes happen very slowly over the course of weeks or months, it is hard to even notice those changes day-to-day.  That is where the symptom tracker comes in.

The last symptom to track is an over-all number to describe how well you felt that day.  Follow the format we used for ranking pain level.  Those of you who attend group in person will know that I refer to this meter as the “Crap-O-Meter”; how “crappy” you felt today. Again here, the lower numbers are our friends!  A 2 on the Crap-O-Meter is a glorious day indeed!  A Crap-O-Meter reading of 5 is a middle-of-the road day.  It is neither good, nor bad.  It is a reasonable day with reasonable symptoms that can be dealt with and we are able to get done what needs to get done.  A Crap-O-Meter reading of 7 suggests that this day (pardon my French) sucked.  Similar to the pain meter, a 7 is in the “severe” category.  And in the way that a pain level of 9-10 requires a trip to the Emergency Room, so too does a Crap-O-Meter of 9-10 require a trip, at the very least, to your doctor.  That Day!  If your crap-o-meter readings have been at a 6 or 7 consistently and then you jump to a 9 or 10 there is something wrong!  You could be starting an infection or the flu, or perhaps it is a “flare-up” (read “abrupt worsening of your chronic disease”).  All of which require immediate attention by a doctor.  Preferably your doctor, the one who knows you best, but any doctor will do.  Get to your nearby Urgent Care clinic or if you feel worse enough, to the Emergency Room.

The symptom tracker also helped me see bigger picture.  I notice if I clear my calendar the day before a social engagement I am much more likely to be able to attend.  If I have a long, strenuous day planned, such as hosting a graduation party at my home for one of the kids, I will need not only a day or two of “down time” just before the day, but I will need at least two days after the event where nothing is on my calendar so that I can rest my body.  In this way I am actually preventing a flare-up in the first place!  My calendar has truly been the most useful tool in helping me to a better level of wellness!  I can predict which events may potentially try to “tip” my apple cart, and I can do my best to prevent it from happening! 

Using a symptom tracker can benefit you in several ways.  First, if you are in the diagnostic phase of illness the symptom tracker can be a vital tool for you and your provider.  Remember to make a photocopy of each month for your doctor.  Let those copies become part of your permanent chart.  It may prove helpful should the day come where you are disabled to work and need to apply for disability benefits.   You have valuable daily information showing what you are dealing with at a quick glance.  Secondly, the tracker can help you pinpoint where your best hours of the day are which can be handy when deciding when to do physical tasks such as working, grocery shopping and laundry.  It will help you socialize!  You will be less likely to cancel if you plan around the natural rhythm of your disease.  Third, you can play sleuth with your treatment plan.  You should see improvement with a new medication.  Your doctor will tell you the timeframe for noticing improvement.  If your tracker doesn’t show improvement, then perhaps you are on the wrong medication.  You will be a valuable player on your treatment team if you can provide statistical data proving the efficacy of your current treatment.  Lastly, but perhaps most important of all, you will have a sense of control of your life.  If you can predict what your best hours of the day are, you can decide where to put those hours to make the most out of your life! 

Best of luck to you my friend!  Until the next meeting, be well!