Step Four: Being Honest

In my completely unqualified opinion, the fourth step in understanding your pain is being honest and avoid the instinct to hide your pain from others.

I suck at this step.  I know I am saying it's part of the Beginner's Guide...but I like REALLY, REALLY suck at it. 

If you've frequented "pain" blogs or articles they are often titled "things you should never say to a chronically ill, chronically in pain person.." and they all talk about how you should never tell someone they don't look sick, or that they are "fine."  They are also talking about the things that we say to hide pain like, "I'm fine, it's not bad" and the list could go on.  And while there is ABSOLUTE truth to it, WE LET IT HAPPEN!

It's all my fault, I will take full responsibility for it.  I often use these phrases and statements because honestly, I'm super uncomfortable to answer it any other way.  Half of the individuals in my life don't know how bad I actually feel and the other half don't seem (just my observations) to understand.  Do I need them to care or understand? Well, yes actually I do.  But like I said, it's my fault!

I'll give you a little story.  I was recently talking to someone about a pain I was feeling.  They are an amazing individual and always support me 100%.  But, I finally said to them "you know I don't tell you every part of my body that hurts when you ask."  They naturally asked me why. My response, "if I told you everything that possibly hurt me in a day, you would think I am crazy and a complainer."  But, there is the reason right there.  I don't want people to think I am crazy. And the list began....and continued.  I got a pause of silence and then "wow, I had no idea."  Now, here is the crazy part, this person is my husband. 

If we can't be honest with those closest to us then how can we truly understand our experiences.  So here I go, a little honesty. 

I go to bed a decent time each night between 10-11 pm. By the time I decide to go to "sleep," I have already been in bed since 8 laying on heat.  It's been turned it off and back on at least three times before I fall asleep. I CAN'T fall asleep without the heat.

 

I sleep with a maternity pillow so that I can prop my head and knees without the pillow falling out of place.  Then I usually wedge a pillow on my other side so I can't move because lord help me, if I roll onto my side, I wake up in a lot of pain. 

 

Now, let me explain what I mean by "fall asleep."  I sleep extremely lightly, any movement or sound wakes me up.  Every time I readjust I wake up.  On average I am "in bed" for about 8-10 hours with the chances of sleeping at about 4-6 on a good night. 

Following me still? I wake up about 1-2 hours before I actually get out of bed.  This is so I can lay on my heat to take away the stiffness of not sleeping and muster the energy to shower in order start my day. 

Now to the good stuff, on average my back/hip hurts me about 85% of the day.  The other percent is for when I am deep in thought or meeting clients and I can focus on them and their pain instead of my own.  My pain scale for back is usually between at 5-40 (lol) okay, 10.  Average day is about a 6.  Today on the other hand is a 10. 

My scale goes like this:
0-3: No idea.... I have never experienced this as long as I can remember
4-5: I guess I'd compare this to a pulled muscle which is tight, slightly achy, and an annoyance
6-7: Next level pulled muscle, feels very tight, 50% movement, and deeper ache
8-9: 30% movement, pain with moving, starting to find it difficult to concentrate and move around
10: Limited movement, pain with movement, unable to sit comfortably, unable to stand comfortably, don't bother laying down, unable to think about anything but the pain, have I done anything productive today? Did I complete any work? What was I talking about?

On top of these, I experience other aches and pains, in combination with headaches and migraines (less frequently). 

There you have it, my honesty and our step four.  Even if it scares the crap out of you, or makes your feel like a giant complainer--just be honest.

Want to share your honesty with someone? I would love to hear from you, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it. 

Step Three: Never Accept The First "Diagnosis"

In my completely unqualified opinion, the third step in understanding your pain is to never assume the first answer is the only answer.

I finally have some answers. But, Lupus? Really.  It just doesn’t seem to fit? I had blood work done every 6 months and the doctor concluded that it must make sense.

So let's look back to the Mayo Clinic again, this time for the the symptoms of Lupus. They are as follows:

- Fatigue and fever – sure, I don't sleep well so that could make sense

- Joint pain, stiffness and swelling –yep, that’s why I am here

- Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose –okay, no this has never happened!

- Skin lesions that appear or worsen with sun exposure (photosensitivity) –yea, that's a no too!

- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon) –cold but not discoloured?

- Shortness of breath –never…

- Chest pain –nope!

- Headaches, confusion and memory loss –but mine are completely hormonal 

So if you are following me here…those symptoms do not follow my original complaint: BACK PAIN. Can someone please explain this to me.  I understand my blood work tells a picture of one thing—but I am here for another!!

So I asked my specialist:

“Could this explain my back pain?”

“No, that is completely unrelated. Your back pain is mechanical”

“Okay…….so then why am I here?”

“To fix the Lupus and auto-immune issues. Try this medication and see me in 6 months”

Do you see a pattern developing here? I am here for my back pain, yet no one is explaining the cause. It’s mechanical.  Umm, okay? Can you fix it? Give me tools? Without medication? HELLO!?

This went on for a year and a half. I would return she would ask how the medication is working? I would explain that there are no changes and that I was still in pain.  She would reiterate that my back is not connected..yadda…yadda.

Finally, one of my last trips to this specialist, I mentioned that my hips were not starting to cause me pain. She explained that she would send me for an MRI to see if there was any cartilage damage (or something like that) and see if this help clear up any disbelief about the Lupus diagnosis. Sure enough, my hip issue is an issue.  BUT–it too is mechanical and happens to also be completely unrelated to the Lupus. Okay, seriously? She explains in her thick accent and medical jargon something about a “Femoral Acetabular Impingement. This means nothing to me.  She tells me that it is not a major concern right now; however, in time if pain became problematic or regular, I would have to see a orthopedic surgeon.

Let’s recap:

Lupus diagnosis based on some blood work abnormalities but not other definitive symptomology

Fibromyalgia..but not fibromyalgia

Headaches and migraines associated with hormone levels

Back pain since childhood

Infrequent hip pain recent onset

Digestive issues (not discussed often..because well, who doesn’t have digestive issues these days!)

NOW WHAT?! Her response....

“Keep taking your medication and I will see you in 6 months. Oh and don’t forget, more blood work!!”

F*CK!

I had continued to see that old specialist for months.  Took her medication.  And nothing…. so I requested to change specialists.  Lucky me! I got a person whose bedside manner was much improved from my previous option; however, the answers were no better.  He told me that it’s 100% not Lupus.

SO? I asked, “what is it”?

“I DON’T KNOW” The answer I’ve been given 1000 times.  How do you specialize and not know? I know, I don’t give them enough credit.  But if you sat in my appointments you would think they don’t try hard enough.  I am 30 years old and have the body of an old woman.  But, I am young! and still have flexibility…therefore, nothing is wrong.

Still no answers.

Then, May of 2015 hit.  This year was supposed to be a great year.  I was getting married in July and everything was going smoothly.  Unfortunately, for some unknown reason I woke up in excruciating pain.  I didn’t even see it coming. I was trapped within my body.  I couldn’t get out. I called my specialist and it took a trip to the hospital, an injection of medication, and harassing his secretary for him to see me. I go in and he has NO answers.  Just orders more MRI’s, this time of my back.  

Well, it’s about FREAKING time

These take months to get into-- YEY CANADA! Once I finally have the scans and the results back, nothing is definitive.

BACK TO SQUARE ONE!

So that is step three, trust your gut and seek a second opinion. Especially if the first opinion sounds like they are describing a completely different person.

 

Got a confused diagnosis story? I would love to hear it, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it. 

Step Two: "Pain Advocacy"

In my completely unqualified opinion, the second step in understanding your pain is always, ALWAYS advocate for yourself-- NO MATTER WHAT.

Flash forward 2-3 years later, I was assigned a new doctor after mine had retired.   Now, let’s not blame my previous doctor.  He had LITERALLY known me my whole life, and knew me very well.  He had known about the many challenges I faced growing up..which could explain his “depression” diagnosis.  Also, the pain in my body didn’t really make clear sense, ergo the FIBROMYALGIA diagnosis. 

They assigned me her and little did I know my whole world would change.  She went through  my file with and noticed something odd: 21 yr old, in pain, with headaches/migraines, diagnosed with fibromyalgia--with NO test to validate this.

So she asked me if I would be okay being sent for bloodwork. Now we are getting somewhere.  Why did it take 10 years of complaining of pain to get blood work you might ask..who knows I am not a doctor.

Then came the blood work.  I got the results “medical jargon, medical jargon, abnormal ANA levels, more medical jargon, go see a specialist!” I have no idea what that means, but okay! 8 months later, I finally get in to see my specialist.  She barely speaks English, knows almost no “laymen’s" terms, and has HORRIBLE bedside manner. Can you feel my excitement?!   So after our initial “consultation,” our conversations sounded like this,

“How are you doing?”

“Not great, I have good days and bad days”

“EXCELLENT, good days are perfect. See you in 6 months”

Uh…WHAT?! You are a specialist. You make probably my salary in a day. That’s your idea of perfect? What should I do? Oh, got to physio and a massage therapist..perfect! I already do that. And….take T3’s and anti-inflammatory’s..even better.  These have proven to be helpful in the past!!

Now repeat this conversation every 6 months, with blood work and we finally have a diagnosis after a year and half.

As Dr. House once said "Its LUPUS.."

So that is step two...continue asking no questions always trust Dr. House, I mean your specialist.

Got your own pain advocacy story? I would love to hear it, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it. 

Step One: The "Back" Story

So in my completely unqualified opinion the first step in understanding your pain is knowing your "story" or history.

When you think of a child, what image comes to your head? Care-free, playful, sassy, maybe all of the above? Good.  This is just a few of the things that should come to your head, among many others I'm sure.  For me, these words described me PERFECTLY! Seriously, if you could take all the sass in the world, and combine it into ONE child--THAT'S ME!

However on the other side of this sassy and spunky child, there was something starting that would remain a mystery for a lengthy period of time.  Now, I am not saying it was a Dr. Jekyll & Mr. Hyde kind of situation, but there were two sides of this child: one everyone can see, and the other which to this day is still often hidden.  Until now..

It all started when I was a child. I would complain of back pain which was frequently brushed off by most medical professionals as “growing pains.”  When I turned 18 and hadn’t grown in what felt like 10 years, I sought support from my doctor.  He told me that I was depressed- which absolutely explains the reason for pain…you know considering that mental illness and back pain ALWAYS happen together. I was generally a happy person without many low days--or so I thought (after many years of self-reflection, I can very clearly say I have been depressed many times throughout my life). But at the time, I felt "stable" and did not consider this to be the problem.  Yet, I was prescribed anti-depressants, which I naively took for a short period of time .  After several months of knowing depression was not the problem, my doctor told me I had Fibromyalgia.  What..The..F... Is that? you might ask, good question. I wasn't really sure myself.  My doctor said it is what is "diagnosed" when no other diagnosis makes sense.  Umm... so, you might be asking yourself-- "was there any tests done?" The answer my friends, is NO.  No, there were no tests done at this time.

So I hit up the "Google machine" to give me more information and here is what I found:

“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals,” according to the Mayo Clinic website.

So….I guess this sounds right. I mean I am clearly not a doctor, so what do I know.  So for a few years I believed that I had fibromyalgia.  No treatment options except for some good ole’ T3’s and anti-Inflammatory medication.  But, lucky for me I can’t take T3’s and anti-inflammatory medication did virtually nothing. 

Sarcasm?…yep!

So that is step one...listen to your doctor, ask VIRTUALLY no questions, take medication that you question is a good choice, and continue to live in a "confused bubble" filled will pain and confusion.

Want to share your pain history? I would love to hear it, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it.