What I Wish I Knew When I Was Diagnosed with Fibromyalgia

Photo by Grafixart_photo Samir BELHAMRA on Pexels.com

Thank you for visiting! My purpose is to share my experience living with fibromyalgia and what I have found helpful in managing this unpredictable condition.

When I was first diganosed in January 2019, I remember feeling a great sense of relief. Relief of finally understanding why I had developed so many seemingly unrelated symptoms. I also felt relief because I could begin researching this complex condition and make steps towards healing. Little did I know that if this illness was not very well managed, the symptoms could easily spiral downwards. I also learned that living with fibromyalgia was not going to be as simple for me as doing enough research to determine how I could heal. I have found this journey to be much more complicated than that. One of my learning curves was understanding how to manage this condition in an attempt to minimize the debilitating symptoms. I also had to learn that despite my many efforts to manage the many features fibromyalgia presents, this illness is relentless and I was going to have to find a way to accept this new life.

There is so much I wish I had known when I first learned I had fibromyalgia. Whether you have been recently diagnosed or are a long term, strong-willed warrior who needs a gentle reminder, I hope the following information will be helpful for you.

  1. Pace Yourself

Pacing was a foreign word to me until recently. I have always lived a very active lifestyle. After work and on my time off, my hobbies involved cycling, hot yoga, hiking, jogging, and long walks in nature with my two dogs. I was a very high energy person and needing to pace myself was never anything I had to be concerned with under ordinary circumstances. Prior to my diagnoses I noticed I was becoming fatigued more and more easily. Gone were the days where I could spend my day off completing the grocery shopping and cleaning my home. Trying to even attempt this venture felt similar to participating in a marathon while battling the flu.

On days where I felt really well I would attempt to accomplish as much as I could to make up for those sick days. I quickly figured out this was far from being a wise idea. Pushing myself past my limit led to flare up that could last days or weeks. One of the best words of advice I could have been told were to be very mindful of how much effort I was expending versus how much rest I was providing myself. To sat that learning to pace has been one of my most challenging struggles would be an understatement. I’m still figuring it out some days. However, I am much farther ahead than where I was a year ago. I still don’t always know my limits, so I try to set a timer for myself. When I am feeling well enough I expend 25 minutes and follow it with a 5 minute rest break. This method is called “The Pomodoro Technique.” I also wish I had known about the “spoon theory.” It’s a very simple, yet interesting analogy about managing your energy supply.

2. The Fibro Manual

The Fibro Manual is an excellent book that discusses living with fibromyalgia. I found out about this resource 6 months after my diagnoses. I was so grateful for finding this book, but wish I had known about it right after hearing, “You have fibromyalgia.” You won’t regret buying this book ASAP. It is written in everyday language, so it is easy to understand. It is written by Doctor Genevra Liptan who has fibromyalgia. A resource by a doctor who truly understands this condition. How wonderful is that? I bring the Fibro Manual to my doctor’s appointments. Health professionals tend to take patients a little more seriously when they see we are making an effort to become more knowledgeable about our health.

3. Nutrition

I have spent the majority of my life practising healthy eating. I have had to be extra careful with my diet over the last 13 years because I developed Irritable Bowel Syndrome (IBS). It’s remarkable how many of us with fibromyalgia are affected by this. I have followed the fodmap diet since I was diagnosed with IBS and it helped me tremendously until a few months ago. Now I am able to tolerate even fewer foods even though they I continue to follow the low fodmap plan. It will be a very long time before I can see a gastroenterologist again, so I am learning how to be very creative with the limited foods I can tolerate.If you have a super sensitive system I would highly recommend keeping a journal that includes what you eat every day along with your symptoms. I’m sure you know many of the foods you can not tolerate already, but you may very likely find there are foods which are causing you to flare that you may not have recognised.

4. Advocacy

You are the only person who is going to advocate for you. In my experience, doctor’s understand the basics about fibromyalgia. It would be to your benefit to do your “homework” before going into appointments (bring your Fibro Manual). Be mindful of your presentation when speaking with your doctor. My experience has been that some doctor’s do not take kindly to patients providing them with information they were not aware of or have a different opinion on. I am very fortunate not to have this issue with my physician. I think this is for two reasons. One being he is an open minded person and we have developed a relationship. The other reason being I make sure I am very respectful how I present the information. I don’t make any demands; I ask him his opinion and the conversation evolves from there.

You may also need to use your advocacy skills when trying to get an appointment with a rheumatologist. The rhematology clinic I was referred to refused to see me. Is there any wonder why us fibro fighters are discouraged and jaded by the health care system? The clinic’s reasoning was that fibromyalgia patients were not being accepted because they were back logged and were only accepting rheumatoid arthritis patients. I felt this reiterated how fibromyalgia is often not taken very seriously in the health care community. I was beyond disappointed that a doctor who specialises in fibromyalgia would deny seeing a patient. If that isn’t classified as discrimination, then I don’t what is.

I assumed I had to accept the answer I was given by the rheumatology clinic, so I did not press further. I didn’t think I had much say in the matter. It wasn’t until I recently had an appointment with a cardiologist that he told me that being refused care from a rheumatologist was completely absurd and I did have a choice. The cardiologist was very adamant that if my doctor followed up with rheumatology, I would most likely be seen eventually. My doctor would likely need to have a very firm conversation with the clinic, but that is generally the angle that needs to be taken for us to get the care we deserve. My physician confirmed he would speak with the clinic and I have yet to hear a response from them. The next step will be that I call the rheumatologist myself. If you find yourself in a similar situation, you do have a choice. Please don’t wait as long as I did before voicing my opinion and settling for such an irrational response. I find it baffling that we are still not being validated by many health professionals. So many people with chronic illness give up and fall silent. This so desperately needs to change.

5) Finding Support

I would highly encourage anyone living with fibromyalgia to reach out for help. Investigate support groups in your community. If your area, like mine, does not have a specific group geared towards chronic illness then you may benefit from a group offered by the Mental Health Society that focuses on resiliency, trauma therapy, and finding acceptance. I have met others through these groups that are dealing with fibromyalgia. You never know who might cross your path. It’s important to get connected.

I would also recommend limiting your interactions with people who are not supportive of your illness(es). Many of us are living with more than one chronic illness. Stress is such a trigger for fibromyalgia and those who do not understand what you live with or care to attempt to understand are not worth the energy. Do not go overboard trying to explain yourself either. There is no point. You deal with enough every day trying to manage a very difficult condition, so why use your “spoons” attempting to justify yourself. Those people you want to surround yourself with will understand why you need to live differently than the average person and won’t question your decisions.

I hope you have found this post helpful. Please feel free to leave me a comment in the section below. I look forward to meeting you.

Until next time,

Suzy

Photo by Isabella Mariana on Pexels.com

Published by suzysjourney

A fibro fighter on a new life journey. I am passionate about sharing my story in an attempt to motivate and inspire fellow warriors.

4 thoughts on “What I Wish I Knew When I Was Diagnosed with Fibromyalgia

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