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: My Five Favorite Spoonie Essentials

Happy Friday! I hope you all had an amazing week and an amazing weekend ahead! It’s Fibro Friday, so I’m sharing some more tidbits from my fibromyalgia journey. One of the things I’ve noticed is that there are a few items that I keep nearby (especially during flares) to make my life a little easier and more pleasant. Here are five of my favorite “spoonie” essentials (if you want to know more about “spoonies” and Spoon Theory, you can read my post here). If you have some essentials that you think should be on my list, please share in the comments!

If I had to toss my spoonie essentials into a backpack, these are the ones I would include.

Knee pillow – Sometimes, my trigger points can be especially sensitive, to the point where it hurts for the insides of my knees to touch one another. When this happens, I love using a knee pillow for relief. There are knee pillow designed for side, back, and stomach sleepers. I have two knee pillows, but this one is my favorite.

Magnesium cream – I’ve written about this before, so if you want more information, you can check out this previous Fibro Friday post.

Ginger candy – This is one that I suspect a lot of spoonies keep nearby, because they are so handy and effective. Sometimes, even if you don’t have a digestive condition (such as IBS or chronic nausea symptoms), you will still find yourself feeling a bit nauseous. Fibro is a condition of nerve dysfunction and improper nervous perception, so there’s an element of unpredictability with the symptoms. In any case, nausea can flare up unexpectedly, and ginger candy can be great for soothing upset stomachs. I’m including the link to my current preferred ginger candy (you can probably find it for a much better price in stores, but if you can’t find it, this Amazon link may help). I prefer a stronger ginger flavor, so ginger mints are my favorite. However, I’m also including the link to a milder version that I used years ago, which are also effective.

Kindle E-reader – When I’m spending a lot more time in bed, I like having my Kindle e-reader nearby. My Kindle is OLD (LOL!) but it still works well. The most economical Kindle available right now is less than $100 USD but it is a great item to have, especially if you’re a bibliophile like me. I love that Kindle e-readers retain their charge much longer than my cellphone, and it’s far more portable than my laptop. Here is the basic black Kindle e-reader.

Easy-to-prepare foods – Some days are more exhausting than others. When I simply don’t have the energy to prepare an elaborate meal, I enjoy having a few easy-to-prepare foods around the house. I love instant soups, noodles, and even protein shakes that take less than five minutes to prepare. The local international grocers have a lot of healthier quick meals than typical grocers, so I generally prefer to shop there. However, one of my favorite meals is by Tsubi Soups (I’ve written about it here) and I can only order it online.

That’s all for this week! I hope your weekend is spectacular, and I’ll be back on Monday. Take care and be safe!

*This post contains affiliate links.

fitness · health

Fibro Fridays: My Fibromyalgia Library

Happy Friday! This week has been pretty good overall, even though the weather here in central Virginia has been gloomy and rainy. I suppose I should be thankful for the rain that keep my flowers growing, but can we get a little sunshine, too? I know the sunnier days will return soon: I just have to be patient.

This week’s Fibro Friday will be all about the books in my “fibro library”. While the Internet has been a fantastic resource for learning more about this complex condition, I still enjoy reading books that can give me some insight into fibro. I have several books that I’ve used in learning about fibro as well as ways to give myself some relief from the symptoms. If you or a loved one have been diagnosed with this condition, perhaps these books will be helpful to you.

My first recommendation is Career or Fibromyalgia, Do I Have to Choose? by Karen R. Brinklow. This book was one of the firsts that I read on my fibro journey. It’s actually what inspired me to hire a fibro coach last year, to help me manage this transition into a new lifestyle. My coach, Julie, was fantastic and instrumental in helping me to see that fibro can be managed and my life can still be full of fun and meaning.

This next book, 12 Healing Herbal Recipes: Herbal Medicine The Delicious Way by Mary Thibodeau, is a light read that I enjoyed tremendously. The book has little facts sprinkled through it, and has information about foods and spices that can help heal the body. I love the emphasis on the fact that we can use food as medicine, and, by giving our bodies the nutrients that they need, we can alleviate some of the symptoms that we experience.

Next, Beyond Powerful: Your Chronic Illness is Not Your Kryptonite by Lala Jackson is an inspiring read about the many “superpowers” that come to the fore when you’re faced with a chronic illness. Jackson doesn’t have fibromyalgia, but her examples and advice easily apply to any chronic condition.

Finally, Taking Back My Health and Happiness: Hope and Healing from Chronic Pain, Fatigue, and Invisible Illness by Marie Anne June L. Tagorda is an inspirational book that also outlines a step-by-step wellness plan that can be used to improve your health. This book does a good job of addressing the physical and metaphysical aspects of illness. I’ll admit: I’ve read the book but haven’t committed to completing the steps yet. But when I do, I’ll be sure to share my results on this blog!

That’s all for my fibro library! I hope this information helps you to forge a path to wellness, or, if you don’t have fibro, I hope that these books will give you additional insight into this condition so that you can better understand the symptoms.

Have a great weekend, and take care!

These are affiliate links featured in the post, but rest assured, I purchased each of these books with my own money and I’m only sharing what has worked for me 🙂