An Authentic, Sometimes Gritty, and Always Hopeful Blog for All Who Live with Severe Physical Pain

Friday, January 31, 2014

Make Certain You Have the Best Diagnosis Possible


This posting is the first of a series I will write now and then to help you manage your pain better.  Most of it will be written out of my personal experiences, along with good information gained at national conferences related to pain, staying abreast of research, and helping helping fellow-sojourners and their families live as well as they can with severe pain syndromes.  

Make Certain You Have the Best Diagnosis (or Diagnoses) Possible 

 (Even if you feel certain of your diagnosis, keep reading!)

~ ~ Pain-related disorders are probably the most under diagnosed and misdiagnosed disorders in the world.~ ~  

There are lots of reasons why... We can’t see or use diagnostic testing for pain, which makes the research for treatment of pain-syndromes difficult, when comparing pre and post treatment data;  most cultures are prejudiced against people who suffer long-term pain whether they recognize it on a conscious lever or not; although people who suffer from pain syndromes number in the millions, individual disorders themselves may be rare, new, difficult to diagnose; and physicians are under-educated about pain-related syndromes.  

When that third physician told me he thought I had trigeminal neuralgia (TN),  he had only recently learned about TN from one of his partners, when his partner returned from attending  a medical conference where TN was one of the topics.  Coincidence?  I don’t believe so.  I call such a thing a “God-incident”. 

We can’t expect over-worked GP’s or even specialists to be familiar with all of pain-related disorders.  Below I’ve listed ones I only have come to recognize as result of my work.   About how many of these have you heard, I wonder? 

 complex regional pain syndrome Tendinitis Regional syndrome Arthralgia
disease   bladder pain syndrome, Small Fiber Sensory Neuropathy, Schnitzler syndrome, PSORIATIC ARTHRITIS 

Here’s even more problems with getting the right diagnoses: Once undiagnosed pain patients get into the medical maze of treatments, likely being passed from one speciality to another,  symptoms become misinterpreted and confused.   In addition, people with ongoing severe pain usually find the physical nature of our pain changes, plus, we may experience, what I call logical add-ons such anxiety, depression, sleeplessness, stomach disorders, to name a few.  

Yep, I been there, done that, bought the t-shirt!

Those were just the reasons I came up with off the top of my head--you, no doubt, could add to that list.  Naturally, all of this compounds the difficulty of discovering the basis of the real problem.

Getting the right diagnosis for right now 
is worth a good amount of effort on your part. 

1 - We cannot under-rate the importance of how a diagnosis validates our symptoms as being real. so we need no longer fear (nor others around us) that it is all in our head. (I will provide help for those who can find no diagnosis next time--I have something that has helped others and I hope it will help you.)

2 - The right diagnosis also directs you and your medical practitioners (along with any alternative and complementary practitioners you utilize) towards the best options for your care.

I encourage all who live with pain-related disorders 
to assess our pain at least yearly, in order to 
keep track of what was, and what is now.  
This is crucial for making 
future treatment plans, and also helps us to  look at
how we are living now so we may consider 
what changes we want to make to feel better 

 Assessing Your Pain: 

What you will find below is the gold standard for patient assessments.  It is likely what your physician has used to try to diagnose you.  It’s called the PQRST METHOD.

If you haven’t done this already, you would be wise  to create and maintain a personal medical history in a  3-ring binder. If you are on the front-end of what looks to be a difficult-to-treat pain, or if your illness has lasted beyond six months or so, you are highly likely to  regret it if you do not organize your journey.  It becomes pretty hard to remember over time, and complicates your treatment and living style hugely. The assessment below, will be a great way to get started if you don’t have a book going already, or will provide an excellent 2014 update if you do. (I will give you some about the binder another time.)

Regardless of how new or how long-term you have journeyed with pain, this may be the best way to find out if you are on the right path as far as diagnosis and/or treatment is concerned. 


1 - You can copy and paste the PQRST Assessment right from the blog into a word 
processing document, to complete it. 

2 - If your pain is new, it will be clear as to how to answer the questions.

3 - If you have lived with pain for a while now, answer the questions in two ways: 
first, how your pain was when it began; second, how it is presently.

People always, always, always, always (are those enough alwayses?) tell me they are glad I made them do this, when I am helping them to better manage their pain.  I bet you’ll be happy you completed it too.

I’ll bet most of you can complete the self-assessment  within an hour- that’s less than the time I have to wait for a doctor much of the tie!  You have a week to complete it--  I am praying for you!

Let’s feel better!


---------------------------------------------copy below and paste to new doc-----------------------------------------------------

PQRST Method  of Patient Assessment

P = Provocation/Palliation 
What where you doing when the pain started? What caused it? What makes it better? Worse? What seems to trigger it? Stress? Position? Certain activities? 
What relieves it?  Medications, massage, heat/cold, changing position, being active, resting? 
What aggravates it?  Movement, bending, lying down, walking, standing?

Q = Quality/Quantity
 What does it feel like? Use words to describe the pain such as sharp, dull, stabbing, burning, crushing, throbbing, nauseating, shooting, twisting or stretching.

R = Region/Radiation
Where is the pain located? Does the pain radiate? Where? Does it feel like it travels/moves around?  Did it start elsewhere and is now localized to one spot?

S = Severity Scale
How severe is the pain on a scale of 0 to 10, with zero being no pain and 10 being the worst pain ever? Does it interfere with activities? How bad is it at its worst? Does it force you to sit down, lie down, slow down? How long does an episode last?

T – Timing
When/at what time did the pain start? How long did it last? How often does it occur: hourly? daily? weekly? monthly? Is it sudden or gradual? What were you doing when you first experienced it?  When do you usually experience it: daytime? night? early morning? Are you ever awakened by it? Does it lead to anything else? Is it accompanied by other signs and symptoms? Does it ever occur before, during or after meals? Does it occur seasonally?

You may add anything else here you believe is pertinent to your pain.  


Yaah!  You’re finished!  You may now eat an entire box of chocolates!  Buy yourself one of those pretty heart-shaped boxes . Send me one too, I like dark chocolate the best. 


  1. Judi~~
    Well I am beyond impressed with this~~~and without question it will be of such help for all who have met up with the four letter word PAIN~~which seems to be a wicked Nightmare with no exit door.... I am going to give you my "End Reaction first"---when I saw the Box of Chocolates---my heart filled to the brim with a major SMILE!!!

    So now for my "First Part Reaction"~~~Judi--I got MAD!! Not at you or the detailed information you offer--if somebody had sent this to me EIGHTEEN years ago~~~it would have made a huge difference in my HUNT for what was giving me such constant Pain. Instead it was the "Doctor to Doctor Merry Go Round Ride" and several doctors left me feeling as if I were losing my good senses.... I truly believe it takes tremendous courage for a physician to look you in the eyes and say--"I do not know what is wrong--but I do believe you have a problem, and I would like for you to see this particular doctor who deals with Pain Management!" Thats exactly how it went for me and I found my Doctor who is still with me to this day....

    So why did I get so MAD? Tonight as we were at a nice restaurant, trying to have dinner--my Neck Pain began to scream at me and I felt so bad--all I could do was ask for a To-Go Bag so we could get home quick! A group of "church folks/friends" sat next to us~~~I could hear them laughing, conversing with Ease---in short, I saw no PAIN at their table, and my heart ached for the loss of that free feeling. My dear husband sat and watched in helpless frustration--knowing all we could do was get through it.......

    We had attended Mass earlier and of course my Neck was already throbbing and I really don't recall much of the Priest's sermon, the music, nothing except my desperate PRAYER for help to cope better with the Pain... My husband had to speak with someone after services and I leaned against a wall--bracing my Neck, hoping to take the pressure off. Suddenly the Priest appears and is asking me "where I have been and How I am doing"---I could not hold back my emotions--as I glared at him and said in a voice filled with anger "I am NOT doing GREAT--not one bit!"

    I prayed hard tonight--asking for God to help me handle this newest PAIN better and I will keep praying..

    Bless you dear Judi for this assignment--it might take me a bit to get it all done..... love, martha

  2. I am so sorry you had to leave the restaurant! Many to most who read this will be able to identify with what you express. I wonder, Martha, was leaving hard mostly because you wished you could have a fun night out with your husband like others appeared to be having, or was it because your church folks/friends didn't acknowledge your pain and reach out to express their concern? I'm asking because it may be helpful for you to consider. Either is painful. For me, however, it is usually most painful to feel overlooked by friends, who could really help me emotionally, if they simply noticed and told me they were sorry we had to leave because of my pain. To be acknowledged means a lot to me.

    I also wonder if you are sure your priest was judging you? When I am in great pain, I sometimes think someone is being critical or acting uncaring, when he or she is not intending to do so. It's like pain clouds my ability to tell what another person is trying to express to me.

    Might it be worth your time to consider this? It makes me sad for you to believe you were judged by your priest, if that was not his intention.

    Yet, I know that "even" our pastors, priests, and those who we expect to be most supportive may not get our pain or our lives. I pray for more and more understanding, acceptance and a greater heart to care on their part.

    You just keep going, dear Martha…. we need you!


    1. Sweet Judi-
      How you help me to gain a different perspective on my "Night Out"-- when our church friends first came in-one woman came over, and was showing concern for me, but as she walked away, I heard words of "I will find the RIGHT Doctor for you" ---and that was it.... Sometimes I think people would prefer to "keep their distance" so Pain would not come their way...

      My precious husband was so understanding---so I think you are on the target about my feelings of not being able to share in a night of fun with church friends. It hurts as I see these rapid changes happening in my life. Yet I know the MASTER is beside me and will not let me fall--as to my Priest~~~~ ah this one is tough---many issues at play here---cultural difference, his mind is so busy with furthering his education, seeing this New church grow, wanting to leave and go home to his country. I would be thrilled to sat down and give him a strong explanation on my journey~~the heartache is that I doubt he would hear me......................

      That one hurts deeply..... If he had been able to "make the deal" and get our land in the grasp of the Diocese--probably he would be very willing to LISTEN...... Money, Money........

      I look to God and keep praying, knowing HE is helping me take one step after the other----You understand this perfectly my friend. I am learning from you! Love and Blessings I send your way....