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

Wednesday, February 12, 2014

Make Certain You Have the Best Diagnosis Possible - Part 2

Note: You should read Part 1 of this topic before reading this one, so please go back and read that first if you haven't.

I hope you assessed your pain, according to the PQRST Assessment I posted on January 31st. Regardless of how long you have been living with severe physical pain, it’s a good idea to assess your pain once a year.

I completed the assessment, as well, which gave me new possible leads regarding  a pain-disorder I have, which is secondary to my trigeminal neuralgia (TN); pain I began to experience to high-pitched sounds after my first brain procedure in 2006. I might experience what sounds like a jet landing in my front yard, when a neighbor turns on a leaf blower, for example.  It’s called “dysacusis”. 

It grew worse quickly, which led me to seeking help from two physicians who were able to diagnose me, but neither couldn’t offer hope for improvement. Each had their own theory about what caused it. The first hypothesized that it resulted from the original virus that most likely caused my TN; he believed the virus continued to cause mini seizures in my deep-brain--specifically in the amygdala body--which serves an olfactory (smell) function, along with  others that will scare the heck out of anyone to think that seizures might be occurring inside there.

The second physician believed it was a resulting consequence from my first brain procedure where a mistake was made, resulting in damage to at least three of my cranial nerves, including my olfactory nerve. 
Thankfully, although they could not offer me any hope for getting better, the first physician, an ENT, was able to create specially-molded earplugs for me with varying levels of sound masking. These allow me the ability to be in public more than I would be otherwise.   
That was about three years ago. Taking the PQRST Assessment confirmed my belief that the disacusis has steadily worsened, and motivated me to dig deeper, hoping God might lead me to help. 

As I prayed, I knew what else to do...which what I advise you to do once you’ve completed the PQRST Assessment, and have some better insight into your pain.

Go to the Internet, Before Going to the Doctor 

Physicians may tell you this is a terrible idea, giving you examples of patients who completely misdiagnose themselves via the internet, possibly even refusing to believe their doctors over what they think they’ve learned on the internet. 
Physicians (as well as family members and others!) may be concerned that you’ll become too frightened or too anxious about everything that could possibly go wrong, which may work against your health rather than for it. 

All valid points. I hope, though, you are able to take advantage of the internetBesides the holy Word of God, I can’t think of any other source that provides more information, both technical and practical, that can better equip us for seeking the best for our health. 

Tips for using the internet to learn and help you diagnose your own pain. I’ve drawn upon  a prominent social media platform , to write these three tips:  
  1. Keep a breadcrumb trail as best you can. When we’re online we forget where we go and often don’t know who we’re listening to. This can lead us to become confused between what might be real information, versus personal anecdotes and stories. I suggest you create a document to copy and paste links with pertinent info for your reference yesterday, or else add links to your history. 
  2. Check the credentials. Look for academic medical centers, or known health care institutions. Look for similar information between sights so that the validity of what you are finding is increased. I also will look for research; usually at least summaries of research are posted before I am blocked from medical membership sites.
  3. When perusing patient advocacy sites, look for the values of the organization, size of membership, how long its been active, realism of information, etc. There are many patient advocacy sites that are excellent-just watch out for ones that are promoting a particular agenda, such as ones dedicating to slamming the medical field, or promoting only one treatment. At this point, you are looking for a good review of everything and anything regarding your pain symptoms.
  4. Be wary of advertisement-laden sites. suggested that such sites can be edited to meet requirements in tone, scope, or opinion by advertisers. So I’d be wary of those. 

I have one more tip, that is so important, it needs to stand alone: 

Dive no deeper into the internet than 
you have the faith to bear. 

As soon as you come across information or read about others’ experiences that cause you to fear, despair, or to become discouraged, turn the computer off!  That’s as far as your faith allows you to go right now. 
I have had to walk away from the internet many times; had to do so again just two nights ago. It gets easier. 

What doesn’t seem to get easier for me, is how to try to pack eight years of experience into a manageable posting!  (I have probably written a couple of megabytes worth of text on this topic--and I pray I’ve chosen well what to include and what to discard!)

When I walk away, it helps me to remember the truths below. They are true for you too, if you have come to terms with the fact that  you cannot control your life and the people around you in order to be complete; instead, it is by recognizing and giving up control to the One who has the better plans, you are made whole.  In Christ alone.  

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
I... His child. (John 1:12)
...was chosen even before the world was made. (Eph 1:4, 11)
...can trust that even bad things have a purpose. (Romans 8:28) protected from the evil one. (1 John 5:18) forgiven for all my waywardness. (Ephesians 1:8; Colossians 1:14).
...will always have hope, despite what I see with my eyes. (Ephesians 1:12)
...will never be overlooked .(Ephesians 1:13)
...can obtain peace no matter what is going on in my life. (Ephesians 2:14)
...can approach God with confidence, knowing He will give me mercy 
and help. (Ephesians 3:12)
...can trust that there is a purpose for my sufferings. (Ephesians 3:13, 2 Corinthians 1: 3-5)
...can never escape from His love. (Ephesians 3:18)
...will live forever in a glorious place without pain! (Revelations 21:4)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Armed with Information
The internet turned out to be a great resource for me last week.
After completing my own assessment, and armed with new information, I was pleased to let Google open new avenues of information for me.
I learned that there are two forms of hypercusis, and the kind I have is associated with damage to the auditory nerve, rather than the scarier thought of ongoing seizures in the amygdala (as the first physician theorized.) My studies also pointed out some symptoms I hadn’t considered to be part of the hypercusis, which have come as a relief to me.
Even better, through following a few other links, I came upon some interesting treatment options, that have only been around for a year or so, because of new technology. I am looking forward to finding out more about these. 
Overall, it was well worth the two to three hours I spent researching sites, in addition to putting together a  word processing document where I copied and pasted various information to reference later.

Now it’s your turn.  Time to go to the internet, or to go again. Happy Hunting!

Important Information  About Those Impossible or Impossible-As-Of-Yet to Diagnose Pain-Related Disorders

If you are one of the unlucky people who has come up empty handed regarding a diagnosis, I hope this section will help you.
Although my primary pain syndrome is TN, I have developed, over the years, other pain syndromes that remain undiagnosed. One of the worst are severe head aches, which I usually call “migraines” although they do not truly fall in a migraine category.  When pressed, my neurologist told me they were “transient idiopathic migraine-like headaches”.
Medicine has lots of big words for simple things. Transient...meaning coming and going at random times. The word makes me picture my head ache as though it was a displaced organism, wandering around inside my brain looking for a place to fit in. 
Idiopathic. The word has its roots in the Greek language, with "idio" meaning "one's own" and "patheia" meaning "suffering or feeling". When I am not feeling very kind, I tend to call it , “idiot-pathologists”.  When we cannot get a diagnosis, it doesn’t mean we aren’t ill; it just means pathology has failed us, “Those idiots!” 

I’m exaggerating my feelings...somewhat. For,  I am shocked that in 2013  the American Psychiatric Association, broadened its definition of “Somatic Symptom Disorder” to essentially, make it easy for physicians to label  their patients who experience pain of unknown origin as “head cases”.   A colleague of mine, Richard Lawhern, is leading the charge to change this awful decision. Learn more through a patient advocacy site he serves:

When you are faced with experiencing a pain syndrome that is not diagnosed, or diagnosed as of yet, I recommend you create your own diagnosis!

Some people like to have fun with it it“IDKBIKM Disorder” (I-Don’t-Know-what it is-But-It’s-Killing-Me Disorder)
Or, create an informed name. It serves to give you the proper respect that your pain requires to people who demand a diagnosis to care. I’m not suggesting you intentionally deceive anyone; simply that you have a name you can use as necessary to receive proper respect and consideration.

Here’s how it works:
1 - Using all the information you’ve learned via the Assessment and through on-line resources, consider what system of the body best fits:
Skeletal,   Lymphatic,   Muscular, Nervous System
Respiratory,   Gastrointestinal,   Immune
Reproductive,  Cardiovascular 
 (You may want to go deeper into these systems for more specificity)

2 - Consider pain terms to clarify your pain: 
Allodynia: Pain caused by a stimulus which does not normally provoke pain. Eg. Lightly touching uninjured skin causing pain.
Analgesia: Absence of pain in response to stimulation which would normally be painful. Eg – Not feeling a pin prick to the skin.
Dysaesthesia: An unpleasant abnormal sensation, whether spontaneous or evoked. Hyperaesthesia: An increased sensitivity to stimulation. Eg – A light touch is perceived as strong.
Hyperalgesia: An increased response to a stimulus which is normally painful. Eg – A pin prick is felt more painful than is normal.
Hyperpathia: A painful syndrome characterized by an abnormally painful reaction to a stimulus, especially a repetitive stimulus, as well as an increased threshold.
Hypoalgesia: Reduced feeling of pain to normally painful stimulus. Hypoaesthesia: Decreased sensitivity to stimulation, excluding the special senses.
Causalgia: A syndrome of sustained burning pain, allodynia and hyperpathia after traumatic nerve lesion, often combined with vasomotor dysfunction.
Neuropathic - shocking, burning when the dentist drills to deeply.
You will gain more respect and be able to advocate for yourself if you tell someone you have neuropathic leg pain, than to say you have an undiagnosed leg’s just how it is. 

3 - Go one step further if you feel the need to assert yourself with inconsiderate people around you, by including a Latin term.  I only spent a few minutes looking these Latin words up on the internet--and didn’t consider grammatical context.  I know you’ll do a better job:  

destroy, waste, weaken, impair
lethargic, inactive / slow, lingering
greatly, exceedingly, to the highest degree, very
to penetrate / sting, annoy, harass
to twist, curl, rack, torture, torment, distort, test
to affect, afflict, weaken, sap, exhaust, drain
to poison, taint, corrupt

Putting these together, then, how about this “personal diagnosis” for a someone, who, thus far has not found a clinical diagnosis for deep, heavy pain he experiences in his right thigh muscle: 
“Adficio quadricep hyperalgesia”   (pronounced : add-fee-see-oh,  quahd-rah-cep,  high-per-al-jee-zee-uh) 
a.k.a “Impaired-quadricep-muscular-pain-upon-certain-movements-or-when-being touched.”

I’m sure some reading this, believe this is going way, way, way too far. For others who have suffered for years without a diagnosis, coming under scrutiny and condemnation from others... I offer these ideas without apology to anyone. 

Blessings and safety, 

This is what it looks like in my neighborhood tonightwith more to come. I pray you are safe and soundand warm. 



  1. Judi-
    You have been on my mind so much during all this horrendous Weather which has hit your part of the country! The photo you shared says it all~~~we have gone through Sudden Low temps/Sleet, normal temps the next day and then dramatic drops in temps which had my Pain almost in a "confused state"--as if it were saying "Would somebody tell me what the Heck is going on here?" I rode through it~~in all honesty-what else can we do?

    I took to the Computer recently for information regarding my NECK, C5/C6 Ruptured Disc (never dawned on me to research the same problem for my Lower Back) and yes, there is a Ton of information out there. Personal stories--one after the other, people sharing all they have been through and when I finished--my husband walked into the bedroom, saw me just staring off into Space, (SHOCK more like it) and I told him "Remind me to go Slow on looking up information about my NECK!!"

    Guess one could say the Fear of what I found was big--because of my decision to NOT have any Surgery. I know my body is worn thin from so many operations for my Trapped Sciatic Nerve~~~when you fall 12 ft. from a tree, go through a two year hunt for "What the Heck is Wrong with Me"---its pretty easy to put the Wall up against any further Surgery.....

    I recently finished getting a Round of Injections for my Neck--and there has been relief with each one--but sadly not to last.. The next procedure will be to have the Nerves burned---had it done before on my lower back and it really does help!!

    I must say this is a time in my life where a new Pain is teaching me so much~~~it demands my attention in ways I never thought could happen. Recently I reached out and gave our car door a tug--no problem~~or so I thought!
    As I took a very short walk to our front door, it felt like I was having a Heart Attack--severe Pain! Surprising to me was how quickly it relaxed and I recalled "internet research" that reminded me of this being a possible symptom.

    My Faith carries me through each day--blessing me with a husband who rises to whatever situation we are faced with and together we are walking through this New Pain Journey. One thing that I really wish to share is after almost 18 years of Pain~ and being hit with the latest--NECK---I am finding myself more relaxed than I have been in a long time.
    Do not get me wrong--I live with PAIN every single day---but my heart is relaxed, I am allowing JOY to flow inward--and I don't even notice the Leg/Back Pain as much.

    People look at me and say--"I could not do what you are doing"~~~as I pause and tell them 'You do not know what you can handle until you are faced with it!" This was one of your very best posts Judi---and it does help people to stop and Think~~~~there is still LIFE to enjoy---regardless of the Pain. I treasure my blessings and am taking each day,one step at a time--with my heart looking toward The Lord... Blessings to you my dear friend! martha

    1. Martha, you give me encouragement more than I can say…weak and whiney person that I am. "My faith carries me through each day"…what a battle-cry.

      New pain--it never ends. I read something on the internet just today that made me stop and shake--it was a theory about some of the pain I have--and it was awful. I wasn't even looking for information about my pain--wow--I practically ran away from the computer to get my head on straight. I WILL NOT GIVE UP! WE will not give up!

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