ARE WE THERE YET? The LONG HAUL to diagnosis

EPISODE 3: The Long Haul to Diagnosis

RANDOM DIAGNOSIS: FIBRO-WHAT? THE BACK STORY

It seemed I randomly received a fibromyalgia diagnosis in 2009 but subsequently denied it because there was no explanation or follow up from the nurse practitioner I was seeing at the time.

I went in for elbow pain and walked out with a "secret" fibromyalgia diagnosis. I say secret because I didn't know it - she didn't tell me anything about it; I found out from a new doctor a year later in an appointment for a sinus infection. To read about this story, click here

In between then and now, I ended up using an exorbitant amount of healthcare, chasing after this pain or that symptom or just being worried that all of this was leading to some sort of awful diagnosis like cancer, or ALS, or MS. When, fibromyalgia - after all - was the probable cause of the all-over body pain I am experiencing now in 2022; "probable" because, as of this post, though I am being treated as if I have fibromyalgia,

I have ONE more appointment with a neurologist to determine if this is the diagnosis we settle on or if there are any other possibilities for my chronic pain. This is the end of the line for me and I am glad. This has been a months long journey with test after test after test. Honestly, I'm sick of it and if this is where we end up, then we have come full circle and it is high time I address it appropriately.

HOW LONG? HOW MUCH?

But how did we get here? I must admit, although "months" seems like a long time, countless people must see doctor after doctor searching for a diagnosis for as many as 5 YEARS.

Admittedly, it is a long process and it can be costly and time consuming. Depending on your

insurance deductibles and copayments, it can cost hundreds, and perhaps even thousands. Speaking only from my own experience, with all of the doctor visits, tests and examinations since this process began, it has cost hundreds. Since April 2022, I have seen 12 different doctors, including 4 specialists, in 35+ visits. This list includes primary care, urgent care, emergency care, eye specialists, rheumatology, urology, pelvic health, physical therapy, and behavioral health. It's a LOT! With each visit's copay costing between $30-$50, it has added up to over $1200 since April alone. But, here we are and this is, as it seems, the typical process to a fibromyalgia diagnosis.

I went from denying I had fibromyalgia and insisting it be removed from my medical history to undergoing a series of tests to determine if I had truly had fibromyalgia. It is a long and involved story which includes therapy for family abuse, sexual assault, anxiety, depression and C-PTSD, ophthalmology tests, urology tests, pelvic health examinations, and finally, a battery of blood tests to rule out possible co-morbidities. I needed help.

Let's back up a bit. In an earlier post I detailed how I woke up one day with all-over body pain. I tried to work it out with stretches, yoga, meditation, altering my diet, ibuprofen, naproxen sodium, and aspirin to no avail. I decided to ignore it until it became unbearable. This was the swelling of the iceberg.

SYMPTOMS: NOT UNUSUAL FOR FIBROMYALGIA

Prior to this, in December of 2021, my left eye suddenly started burning and watering like a faucet, and swelled, prompting a trip to the emergency room and an emergency appointment with the ophthalmologist. I was diagnosed with uveitis and dry eye disease, a common experience of persons with fibromyalgia. In March of 2022, I started having bladder problems. I had pain and urgency when my bladder wasn't full and pressure and discomfort when I urinated. Again, these are symptoms not unusual for person's with fibromyalgia. Although my urine culture did not show a tremendous amount of bacterial growth, I was treated for a UTI. This persisted for 3 months. I was sent to a urologist who identified a pelvic floor disorder. And guess what... not unusual for persons with fibromyalgia.

I was sent to a pelvic health specialist who pointed out that perhaps somatic experiencing would be more helpful as my symptoms may be caused by my body holding on to trauma from abuses I had suffered as a child, teen, and in my young adulthood. BIG HUGE EXPLETIVE HERE!!! It seemed there was no end to this drama! What else?

Oh Yeah! I stopped drinking

Hold onto that thought! My alcohol-free decision and life choice is another post.

But what is important to note is that when I dramatically reduced my drinking in March, and ultimately stopped drinking in April of 2022, this change played a HUGE role in why my bodily systems suddenly went crazy. The all-over body pain didn't just happen. I had been masking most of this with copious amounts of alcohol. And by July, when my brain started to wake up and my nervous system came back on line after so many years of alcohol abuse, the pain came shrieking back - it didn't just start; It had been there the whole time and now it had the opportunity to SCREAM: "HEY!!!! I HURT!"

So, in truth, this has been a years long journey, but since my body finally had the chance to make it clear, it sent all the pain signals, misfired or over-sensitized signals, it didn't matter, ALL THE PAIN SIGNALS to prompt me to call my primary care provider to FIX THIS! Well, it isn't that easy. Ahead of me was a long series of tests that revealed...

... nothing.

So, that's the story. Now here are the facts. Currently, there are no specific laboratory tests for fibromyalgia. And although it was incredibly frustrating, the series of tests my Nurse Practitioner ordered for me was time consuming, but appropriate. A diagnosis of fibromyalgia is a diagnosis of elimination. It is all the things you don't have, plus your symptoms, duration of symptoms, a physical exam and your medical history.

THE TESTS

Since I had been in Northern Minnesota when the pain "started", it was appropriate to test of Lyme Disease because Minnesota is loaded with deer ticks that carry the disease which causes symptoms such as all-over body pain. The test was negative. So my Nurse Practitioner ordered a whole slew of tests:

1. HEMOGRAM/PLTS/DIFF. CBC or Complete Blood Count: A CBC helps your doctor check any symptoms that you may have, such as weakness, fatigue, or bruising. A CBC also helps him or her diagnose conditions, such as anemia, infection, and many other disorders.

2. RHEUMATOID FACTOR, QUANT.A rheumatoid factor (RF) blood test measures the amount of the RF antibody present in the blood. A high level of RF can be caused by several autoimmune diseases - including rheumatoid arthritis.

3. LIVER PANEL(HEPATIC FUNCTION PANEL). This blood test is used to determine whether the liver is damaged or inflamed.

4. PARVOVIRUS B19 IGG & IGM ANTIBODIES. Human Parvovirus: This test determines present or past infection. Because it detects antibodies from past infections, it does not necessarily mean if a person tests positive they have active infection; Parvovirus antibodies stay with a person for a lifetime. More often than not, a person had a past infection, most likely in childhood.

5. C-REACTIVE PROTEIN. A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in the blood. C-reactive protein measures general levels of inflammation in the body.

6. BASIC METABOLIC PANEL. A basic metabolic panel (BMP) is a test that measures eight different substances in your blood including: glucose, calcium, sodium, potassium, carbon dioxide, chloride, BUN (blood urea nitrogen) and creatine. It provides important information about your body's chemical balance and metabolism.

7. TSH, SENSITIVE. (ordered by the Rheumatologist) A thyroid-stimulating hormone (TSH) blood test is used to check for thyroid gland problems.

8. ANA WITH REFLEX TO ANA PROFILE 2.(ordered by the Rheumatologist) An ANA test detects antinuclear antibodies (ANA) in your blood. The immune system normally makes antibodies to help fight infection. Many rheumatic diseases have similar signs and symptoms — joint pain, fatigue and fever. While an ANA test can't confirm a specific diagnosis, it can rule out some diseases.

9. Vitamin B12. A vitamin B12 test measures the amount of vitamin B12 in the blood. The body needs this B vitamin to make blood cells and to maintain a healthy nervous system.

10. VITAMIN B6. A vitamin B6 blood test helps determine whether or not someone is deficient in the vitamin, or has high levels. It can give the doctor clues about anemia, heart disease, lack of energy and skin problems.Vitamin B-6 is important for normal brain development and for keeping the nervous system and immune system healthy.

All of the test were normal and provided "no explanation for pain". The last two steps were to see a neurologist and a pain specialist in the Neuroscience Center. The final assessment from my physical medicine and rehabilitation (PM&R) physician (pain doctor) was as I suspected: "Fibromyalgia syndrome: pain ... consistent with a central hypersensitivity".

NEXT STEPS

What we do about it is another post, but I can tell you that after a series of questions about my medical history, my pain location and intensity, and some time going back and forth about medication, we settled on Lyrica (pregabalin) and physical therapy with a therapist who focuses on patients diagnosed with chronic pain.

A note: I do not like to take medication. I am by no means an anti-vaxxer, but if I can avoid the pharmaceutical industry, I will. Again, that is for another post.

As for the Lyrica, I will let you know. I am following the schedule prescribed by my doctor and upping the dosage incrementally. The dosage I am taking right now makes it so I don't care about the pain, but it doesn't take away the pain. We will see where this takes me in the future.

Getting to this point was a LONG HAUL. All the doctors, all the money, all the tests, and all to confirm a diagnosis I was given way back in 2009. But, maybe we are getting somewhere.

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Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.

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