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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!

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Fibro Fridays: Why It’s Difficult to Treat Fibromyalgia

Happy Friday, friends! Today’s post is one that I’ve been eager to write, because I feel that explaining this (from the perspective of someone living with fibromyalgia) may give a little clarity to others that are struggling with their diagnosis, or may help people that are unfamiliar with the condition to better understand why there is no easy “fix” for fibro.

Whenever you try to learn about fibromyalgia online or directly from a medical professional, there is generally a lack of consensus on the causes of the condition. The condition is treated as a bit of a “catch-all” category for a set of uncomfortable (to the point of painful) symptoms. This “catch-all” designation is one reason why there are still some medical professionals that continue to deny the existence of fibro (I already wrote a post touching on this topic).

In any case, the overall lack of understanding behind the WHY of fibro leaves a lot of questions regarding the HOW of treatment. Different root causes call for different treatment protocol. However, fibromyalgia can be linked to muscular, nervous and even digestive malfunctions, so most treatment is, at best, akin to a game of darts. Medical professionals will try to hit the “bullseye”, and many treatments can offer a level of relief, but it seems that no one has hit the “bullseye” of fibromyalgia – YET.

Prescription medication is one treatment option for fibromyalgia

There are many researchers that are getting closer to an agreed-upon definition of fibromyalgia, including its root causes. However, until consensus is achieved, we have an assortment of treatments that can be explored and that may have varying levels of effectiveness. Many of the most popular treatments include physical therapy, aquatic therapy, acupuncture, prescribed medication, nutritional supplements, lifestyle overhaul and lots of intentional self care (which is, by far, usually the most effective treatment [maybe I’ll write more about this in the future]), chiropractic care, etc.,. The trick to managing the symptoms is finding the perfect cocktail of treatments, along with having an excellent support system and medical team in your corner.

Well friends, that’s it for this Fibro Friday! I hope you all have a great weekend, and I’ll talk to you on Monday. Take care!

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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!

health · life curation

Fibro Friday – Do You Have Fibromyalgia? Getting Properly Diagnosed

Welcome to the very first Fibro Friday! I’m hopeful that this series will provide valuable information and tips for other fibromyalgia sufferers, and it’s my sincere desire that my experiences with fibro will help someone else get back on the track to wellness.

*** Disclaimer – none of this is intended as medical advice. Please consult a licensed physician for a professional opinion. ***

The singular toughest part of my fibromyalgia journey was getting a proper diagnosis. There are still a lot of care providers that don’t know how to properly interpret fibromyalgia symptoms, and as a result, patients spend a lot of time suffering before there is a conclusive diagnosis. Even once patients receive a diagnosis, there are some care providers that treat fibro as some “strange” illness that only requires antidepressants and stress reduction to “clear up”. There is even a subset of care providers that deny the existence of fibro altogether.

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On your health journey, you may end up doing a LOT of research.

Let’s be clear: fibromyalgia is a REAL condition, with devastating symptoms. There is still a lot of mystery around why it occurs and how to best treat it, nonetheless, it is real. The challenging part is, again, diagnosing it.

So, how can you determine if you may have fibromyalgia? If you have any of the following symptoms for at least 3 months, then you may suffer from the condition (an asterisk beside the symptom means that I personally experienced it as a fibro sufferer):

  • body aches , soreness or general pain, especially in the back, neck and shoulders *
  • morning stiffness *
  • exhaustion that doesn’t seem to let up *
  • sharp pains or pins and needles sensations *
  • feeling “sick” but not suffering from a cold *
  • may experience virus-like symptoms (feels like the flu) but can’t seem to get better *
  • suffer from extra tiredness and muscle pain after only slight exertion *
  • sensitivity to heat or cold *
  • anxiety, depression, nervousness, moodiness *
  • headaches *
  • sleep problems (can’t get to sleep, can’t stay asleep) *
  • forgetfulness, difficulty concentrating *
  • stomach issues (bloating, nausea, constipation, excessive gas) *
  • painful cramps
  • restless legs syndrome

You may have just one or all of these symptoms. I know that I often felt like I had the flu: I’d often complain of feeling like I got “hit by a truck” and, while the feeling lessened as the day went on, the overall “sick” feeling never went away completely. I was so tired that I couldn’t get out of bed on some days, and the headaches would occasionally be so intense that they could stop me mid-sentence and have me holding my head and I’d seize up from the pain. Nausea, sensitivity to heat and cold (I can’t go into the frozen section of some stores without a jacket because the air makes my body ache), and sleep issues (waking up every two or so hours) are just the tip of the iceberg.

If you have any of the symptoms and suspect you may have fibromyalgia, your best bet is to start with your primary care physician (PCP) and ask for a referral to a neurologist or rheumatologist. Your PCP can do preliminary testing to rule out other conditions (anemia – which often exists concurrently with fibromyalgia – or thyroid disease come to mind), but an examination by a specialist (like a neurologist or rheumatologist) will give you more conclusive results. If your PCP’s testing reveals that you have some other condition, try the treatments for that first, and see if you get some relief/improvement of symptoms. If not, it may be time to see a specialist.

Fibromyalgia is diagnosed through the process of elimination. After autoimmune conditions and other diseases are determined to be nonexistent, then a patient can be diagnosed as having fibro. If it takes you months or years to get to this point, take heart: I started having the worst of my symptoms at the end of October 2018, and I was diagnosed by February 2019. However, these symptoms first showed up (in a milder form) back in 2014/2015, at which time I went to a rheumatologist. The rheumatologist tested me for lupus, and when the tests came back negative, she sent me on my way and didn’t bother to examine me for any other conditions. Imagine how much further along I could have been if this had been addressed properly back then! Ah well: here’s hoping my experience helps you to shorten the time on getting a proper diagnosis.

In short, take a look at your symptoms, and see how long you’ve had them. If it’s been more than 3 months, ask your PCP for a blood test and, if that comes back okay, then ask for a referral to a rheumatologist or neurologist for additional testing. Let the specialist know that you suspect that you have fibromyalgia: they’ll know which tests to do, in order to rule out other conditions.

I know this is a pretty long post, but the next ones will probably be a bit shorter. I just had to let it be known that you’re not crazy, your symptoms aren’t just “in your head”, and a proper diagnosis is the first step on your path to wellness.