health

Fibro Fridays: My Difficult Diagnosis Journey

As promised, I’m back to share with you my journey to diagnosis. I’ve discussed some aspects of this journey before, but I really wanted to share additional details of what was involved with getting diagnosed. It’s really easy for me to focus on the immediate months leading up to my diagnosis, but, in all honesty, my diagnosis was a nearly 5-year journey of doctors’ visits and frustrating experiences before I confirmed what was happening with my body.

I had two primary care doctors throughout the time that I’ve suffered from fibro symptoms. My first doctor didn’t see anything concerning on my bloodwork, but she believed me when I said that I felt unwell. She referred me to a rheumatologist for clarity (an appropriate response), because some autoimmune conditions cannot be determined from basic blood testing. I visited the rheumatologist, who seemed to understand that I was experiencing extraordinary stress along with physical discomfort. However, after completing one round of blood tests, she ended up dismissing my concerns (as you all may know, fibromyalgia cannot be determined by blood testing, which is why some medical professionals deny its existence). I was discouraged by my pain but also relieved that I was not suffering from an autoimmune condition.

I continued to battle my symptoms and found myself vacillating between less pain and more pain, but never experiencing a complete absence of pain. After the first doctor decided to retire from medicine, I started working with a second doctor, who repeated the blood work 3 years after my last round of testing. This doctor also didn’t see anything concerning on my blood testing, but she attributed my symptoms to stress and a demanding daily routine. She didn’t seem to believe that my physical symptoms were real and not easily remedied by minor lifestyle changes.

After having a horrible symptom flare, I knew that I had to take my health into my own hands. I directly contacted a rheumatology office that had good reviews and scheduled my appointment sans referral (I have a PPO for this reason: waiting for referrals can be frustrating). I had already been discussing my symptoms with friends, and more than one of them mentioned fibro as a possibility. I did a little research and was able to clearly communicate my concerns with the rheumatologist. Less than one month later, I had a diagnosis confirming that I was indeed suffering from fibromyalgia.

I “fired” my primary care doc and got a new doctor that was far better for me and my condition. I worked with several specialists and finally started to feel better for the first time in years. The journey wasn’t easy, but it was worth it. I’m just glad that it only took me a few months from the time that I took control of my healthcare to get a diagnosis: for that, I’m fortunate. I know intimately how this process can take many years and many tears, and anyone suffering from this condition has my sympathy and empathy. This path isn’t for the weak, which is why some have labeled themselves “fibro warriors”.

If you have a fibro warrior in your life, please send them a little loving energy: this isn’t an easy experience, and many are doing the best that they can.

That’s all for this week. I hope you all have a wonderful and safe 4th of July weekend. Take care!

health

Fibro Fridays: Why It’s Hard to Get a Diagnosis

Happy Fibro Friday, friends! It’s been a fantastic week, and I’m positive that the weekend will be full of even more JOY and delight!

One of the things that I consider when reflecting back on my fibromyalgia journey is how long it took to get an accurate diagnosis. For years, I had symptoms of fibro yet it took me being completely out of commission (in bed for weeks at a time, unable to sleep for more than 2-3 hours, intense physical pain) before I got close to an accurate diagnosis.

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As it turns out, my experience isn’t unusual. In fact, most fibro sufferers take more than two years to get diagnosis. This statistic is appalling, considering the pain and diminished quality of life that we experience while we wait to get some clarity on what’s going on with us.

I have a few theories on why it takes so much time to be diagnosed. I’m sure that there are more reasons why this happens, but these are the reasons that I experienced, and I’m sure that many others with fibro can relate to at least one of these scenarios.

  • Fibro symptoms often mimic other conditions. Many times, primary care physicians (PCPs) will diagnose you as being depressed (which is a frequent comorbidity of fibro), having muscle strains, or suffering from a viral infection (again, this can often occur with fibro patients). As a result, the PCP, in an attempt to make a conservative diagnosis, ends up “under-diagnosing” (yes, I know that isn’t a word, but bear with me LOL!) their patients. And when this happens, it creates a delay in getting an accurate diagnosis.
  • Primary care doctors are hesitant to refer to rheumatologists unless there is conclusive test results indicating some sort of auto-immune issue. When having blood work done, your primary care may see unusual results . . . Or not. And if everything looks “normal”, they will often doubt that you need to be referred to a specialist. I have a whole story about this, and I will share it in a future post.
  • Some PCPs deny the validity of fibromyalgia. The vast majority of physicians believe that fibro is a real condition, but there is still a minority that aren’t convinced of the seriousness of the condition. If your PCP doesn’t believe that your condition is real, how likely is it that you will get an accurate diagnosis?
  • Some PCPs are very unfamiliar with fibro as a condition, and, while well-intentioned, they may overlook this common but still mysterious diagnosis.
  • Using a variety of PCPs, or having more impersonal relationships with care providers, makes it difficult to determine your “baseline” condition and what symptoms are truly abnormal for you. This is especially relevant for those that have milder chronic pain symptoms or higher pain tolerances. If you aren’t experiencing major, life-altering discomfort and inconvenience, it may not be apparent to a new physician (or a physician that doesn’t know you well) that you are experiencing abnormal pain.

These are just a few of the reasons why getting an accurate fibro diagnosis usually takes quite some time. Even though my symptoms were mild at first, they eventually intensified. It took me becoming incapacitated to get diagnosed, and even that occurred nearly two months after I was in bed for weeks at a time. My advice to anyone that suspects that they have fibro is to get a referral to a rheumatologist as quickly as you can (if you have an HMO), or, if you have a PPO (like I do) contact a well-reviewed rheumatology office and schedule an appointment yourself. It may take some time, but an accurate diagnosis and the right medical team can make a world of difference in your health and quality of life.

That’s all for this Fibro Friday. Have a fantastic weekend!