May is fibromyalgia awareness month with the twelfth as its official awareness day. All month long, I have been and will continue to share fibromyalgia-related blog posts. But that’s not enough. It’s time we acknowledge areas that need more attention, think about what we as patients can do to help educate friends and family, and discuss how to improve our medical care.
On May 12th, I spent the entire day on Twitter discussing fibromyalgia. It was an eye-opening experience, one that showed some key areas that we the fibromyalgia community could improve on.
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Fibromyalgia Awareness Day
Were you aware that there was an official fibromyalgia day before now?
If so, how and when did you hear about it?
Although I was diagnosed in 2003, I didn’t hear about fibromyalgia awareness day or month until I joined Chronic Illness Bloggers in 2016.
Here’s a little something I just learned today: The first official fibromyalgia awareness day was in 1998!!! It was when the founders of the National Fibromyalgia Association, Lynne Matallana, and Karen Lee Richards, set out to get as many cities, counties and states as possible to proclaim May 12th as Fibromyalgia Awareness Day. Read more about their efforts here. Los Angeles County Board of Supervisors were the first to officially proclaim May 12th as Fibromyalgia Awareness Day. That was a total of 88 cities!
Something I noticed during my Twitterefest is that many did not know about this day before their diagnosis before Facebook in 2006. Even with that, most never heard of it before their diagnosis. The same rang true with their first time hearing about the illness being when they were diagnosed.
This tells me two things. The first being that social media is a great tool for raising awareness. The second thing is that we need to find ways to reach people beyond those already diagnosed. While it is wonderful that we are reaching those who are newly diagnosed, we are failing to educate the rest of the world.
We discussed how we felt about our diagnosis. For many, it was a relief to finally have an explanation for their pain. While others weren’t sure that it was the right one.
Everyone agreed that they were not prepared for the emotional aspects of living with fibromyalgia. I personally feel that patients should be given a brochure of some type, explaining the emotional toll that chronic pain from this illness may cause. One that also provided local or online resources would be ideal.
Amanda shared 5 surprising ways a therapist can unlock promising results for fibromyalgia. Read them here.
What Could Help the Newly Diagnosed
In addition to being given a heads-up about potential mental health issues, there were many other aspects that patients found themselves unprepared for. I shared nine things I would have like to have been warned about in a blog post from November 2019. Read it here.
The driving force of my fibromyalgia awareness advocacy is to educate the public so well that when someone receives this diagnosis, they can prepare to make adjustments. Without warnings of what could happen, too many people find themselves unprepared for the financial and emotional impact of this wretched disease.
Fibromyalgia Awareness Should Include Our Relationships
This ugly chronic illness does more than pummel our bodies with pain, it drives a wedge between us and the people we love. One reason for this is that unless someone lives with the same or equivalent form of chronic pain, they will never be able to comprehend what it feels like.
It doesn’t help that there are many rumors and myths about fibromyalgia. Some are even spread by medical professionals who have no experience with this chronic illness. One myth is that it is all in our heads. This dangerous lie leads friends and family to believe we choose to be ill.
Read 6 Fibro Myths Debunked from Invisibly Me for the facts!
Friends and Family
Fibromyalgia can turn a social butterfly into a hermit crab. Void of the physical and emotional energy required to be the life of the party, let alone getting dressed, they begin canceling or declining invitations out.
We become unreliable, not on purpose, but because we cannot predict when a flare will strike. It isn’t uncommon to be referred to as lazy, unmotivated, or depressed.
Family and friends desperately want to fix us. They offer off the wall remedies or things we have already tried. This makes us feel like we are unworthy of any other attention. Often the result is one where we begin distancing ourselves.
In Sickness and in Health
When making this vow, many couples envision the in sickness part as part of their golden years. To be honest, part of growing old is falling apart. However, some of us physically fall apart a lot sooner. My husband and I joke that my warranty ran out the day after we said: “I do!”
Communication is important. Our partners aren’t mind-readers. They have no idea how we feel, physically or emotionally. Without communication, fibromyalgia can tear a marriage apart.
Fibromyalgia changes lives. Your relationship is going to change. How you express your love will also change. Like it or not, your sex life will also change. This doesn’t mean that it can’t be good, because it can be if you are willing to make some changes.
The most important thing a couple could do besides communicate is to not compare their relationship to others. Life with chronic illness differs from those who are healthy. It also differs from one chronic couple to the next. Find your groove and do what works for you!
Dealing with the Medical Community
On Fibromyalgia Awareness Day, we talked about dealing with doctors. One thing that seemed extremely prevalent was that many have not been able to find an experienced fibromyalgia physician.
While it is appreciated when a doctor admits he doesn’t know much about this chronic illness, it doesn’t reduce our pain. I would like to see more research take place. I would also like to see more education available to doctors. Read what I would like to ask a doctor before agreeing to become their patient.
We also shared that there is more than one type of physician one could see for fibromyalgia. Here are four types that you might find helpful.
Personally, I have had better success at reducing pain by following a natural and alternative path rather than a pharmaceutical one. I have a mental health therapist, work with an herbalist, and see a chiropractor to keep my fibromyalgia pain at a lower level.
Fibromyalgia Awareness is Sharing Our Pain
On Tuesday we discussed the importance of sharing our pain. No, not by inflicting it on others, but by opening up and really telling it like it is.
It was agreed that how detailed our explanations were depended on who we were talking with. Some people want to do nothing but argue with us, and that is not a good use of our energy. However, for those who really want to learn about our pain, symptoms, and life changes, we agreed that it is best to give as many details as possible.
Jo shared 18 types of pain she experiences from fibromyalgia. Read them here. Which ones do you forget to include when explaining your pain?
The more we share, the more people will understand the severity of this chronic illness. The longer we keep it our dirty little secret, the longer it will be for people to take fibromyalgia seriously.
Another aspect we don’t often share is how embarrassingly many of our symptoms can be. Yes, fibromyalgia is painful, but it also creates cognitive and other physical issues that we cannot control. If our friends and family knew how embarrassing those symptoms were, they might have a little more compassion.
Alternative Fibromyalgia Pain-Relief Options
As I shared before, pharmaceutical treatments for fibromyalgia failed to improve my symptoms or life. One treatment, in particular, increased the amount of nerve pain I experienced. When it was decided that I should go off of it, I followed my doctor’s instructions for weaning off slowly. Everything was fine until 24 hours after my final dose.
I suffered from the worst detoxification process ever!! My doctor compared it worse than coming off of meth! For seven months, I suffered from excessive sweating. My bedsheets and clothing had to be changed twice daily, even though my house was set at 68 degrees. I feared to sleep because every time I closed my eyes, I would wake up screaming from night terrors. My body felt like it had bugs crawling inside and out! And the pain, oh God the pain! I don’t wish what I went through on anyone.
It is because of this horrific experience that I turned to alternative and natural options. In addition to chiropractic care, my pain-management plan includes but is not limited to daily PEMF therapy, cannabis, and herbal remedies for inflammation. This combination has taken my fibromyalgia-related symptoms and pain from some of my worst to my least.
Other alternative options that others, including myself, use are gentle stretching and yoga, aqua therapy, massage, acupuncture, and Reiki.
Because there is such a division between pharmaceutical treatments and alternatives, I had to take this path without my doctor. I would love to see more acceptance of these treatments in the medical community. To this day, if I mention an alternative or natural treatment to any doctor in my HMO, they shut the conversation down immediately. It is as if they can’t get insurance to pay for it or cash in on a kickback, they don’t want to hear anything about it.
How Fibromyalgia Changed Our Lives
Fibromyalgia changes lives. Areas that I feel need to be discussed more are careers and mobility.
Careers are ruined. Pain and fatigue make it difficult and often downright impossible to focus. The very careers that we worked so hard to achieve become a memory of who we used to be.
For some, it could be that they can perform the job, but need flexibility with hours. Others might find they have more energy when they have the option to work from home. Showering, getting dressed, and commuting to an office is exhausting when living with fibromyalgia.
Many of us with fibromyalgia suffer from limited mobility. My mobility took a major hit just two years after my fibromyalgia diagnosis. Mind you, I was also dealing with out of control pain and symptoms from psoriatic arthritis and endometriosis at the time, but none the less, the fatigue and pain alone would have been enough.
I was in my mid-thirties. Strangers made rude comments or would give me their disapproving glares. Family and friends didn’t understand why I wasn’t getting better. And I just wanted to disappear.
Without a choice, I had to find a way to accept my physical limitations. I take that back, I had a choice, it was never leaving home or adapt. Thankfully, I chose to adapt. Choosing to modify how I got around didn’t come easy. But one thing that did help was realizing that everyone uses a mobility aid of some kind.
Another obstacle was thinking that I had to choose one mobility aid. I now own a fleet of mobility aids. Each has a specific use and purpose. They all have improved the quality of my life. Here are some tips for finding the mobility aid that fits your needs and lifestyle.
Fibromyalgia Awareness Advocacy
What are some things we as fibromyalgia patients can do to better inform friends, family, the medical community, and new patients throughout the year?
We could participate in fibromyalgia awareness events online and in person. Check out what my friends at Support Fibromyalgia are doing and see how you can get involved.
Fibromyalgia awareness jewelry, clothing, phone cases, stickers, and magnets can help spark conversations. Here are some eye-catching options!
Most importantly, we need to acknowledge that fibromyalgia awareness month goes beyond 31 days, it is something we should be actively doing 365 days a year.
What more do you think we as fibromyalgia patients be doing?
Let’s keep the conversation going! Share this post with your friends and family today. Together, we can make a difference!