Why and how do you deal with it?

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How scary my first diagnosis was

At first, I was told I had a muscle disease. How scary that was for me, I cannot put into words. I had three young children including a baby girl I wouldn’t be there for. All of the milestones I would miss, that thought brought tears to my eyes and broke my heart. Then the thought of the memories my children would have of me would be sick. Needing help to do everything and eventually leaving them. I started setting up other women who could be like a mother to them. Asking family members to help with certain things I wanted them to know.

What it feels like to have fibromyalgia

So when I was told I actually have Fibromyalgia, I was relieved, to say the least. I knew it meant a lifetime of pain. How much and to what degree I did not know. Then you have the additional side effects, the ones no one tells you about.
The muscle pain is one thing but then you add the exhaustion, eyesight issues, migraines, sleeplessness, brain fog, nerve pain, joint pain, dizziness, active labor pains, and countless others. The list of side effects created by Fibromyalgia is truly endless. We are finding out new things about our personal FIbromyalgia every day. No two cases of Fibromyalgia are alike, something that helps me may not help you. The amount, degree or type of side effects are also all different.
Then you add in all the people, including most Doctors, who do not understand anything about Fibromyalgia. Which is understandable in some ways. Look at all of us having different side effects to different degrees and this medical problem is very confusing for anyone, including those of us who actually live with Fibromyalgia every day.

I have heard many comments from people with Fibromyalgia about their families leaving them behind. Can you imagine going through something that can keep you out of daily activities with others and then they leave you because of that? Many people have said that their family believes they are faking. Anyone who is of sane mind would not want to fake this illness. I am sure there are some people out there trying to use our illness to gain disability, they probably think it will be easy because Fibromyalgia is hard to detect visibly. But for those of us who are not lying, we all know we are telling the truth about our pain and daily difficulties. There are times when we just cannot get out of bed. Then you have the other days when it hurts to live our arms so we can brush our hair. My husband has had to wash my hair for me several times over the years. I am blessed to have that help.

coming together to unite fibro warriors

The yo-yo effect of fibromyalgia

For most of us with Fibromyalgia, we have days when we can brush our hair and shower. Then we have what is called a flare-up or as some call it, a fibro flare and those are the days it is hard to get out of bed. For anyone who does not believe Fibromyalgia is real because we have some days better than others, you are wrong. We are in pain every single day of our lives. The only thing that makes certain days better than others is the degree of our pain is less on the better days. I have not been pain-free in seven years. There are many others who have had it much longer and most of us looking back can remember side effects earlier than when the daily pain started. But to us, it was normal because we had been dealing with the side effects mildly off and on for so long they felt normal.

Each day I find a way to live life, just like countless others I have talked to with Fibromyalgia. You just have to sometimes force yourself to smile (the fake smile we all know so well) and decide to be happy that day. With as much happiness as you can possibly muster This task may seem small but it is indeed a large accomplishment for us.

Why would you go around smiling all day when you have pain, brain fog or exhaustion hounding you? There are not many people who can achieve this great accomplishment. So just because someone you know who has Fibromyalgia is smiling that does not mean they are happy and everything is wonderful that day. It means they are trying to force their day into brightness.

How honest we should be

When most of us are asked how are we doing that day and we say good, it means, “At this moment my pain is manageable and I may be able to do something today.” Which is maybe a new way we should say it. Maybe if we said, “My pain is less right now but if you want to go out will you drive so I won’t have a flare-up?”

I would say this to the people who are a part of my understanding circle. Like my Husband or my Mother-in-Law. My own Mother and I would have to draw straws on who feels better than whom that day. We all need that circle of people we can trust. Those people who make us feel less abnormal than everyone else. We deserve just as much happiness as other do. Regardless of a visible illness or not. I am not less human because I have Fibromyalgia than you are. If we ended the judgment of others our whole world would be a better place to live. We need each other to build us when we fall and love us whether we are whole or chipped. Love is love, there is nothing better or greater than love.

My list of helpful favorites

As I go through life with Fibromyalgia I carry with me, my heating pad, melatonin (time release), GABA, light exercise and medicinal food. When I flare-up I choose to use a cleansing bath with Epsom Salt, Baking Soda,

My favorites for a fibro flare up.
My favorites for a fibro flare up.

and Lavender Oil. Plus I talk to people who know or at least try to understand what it is I am going through. These are the ways I have found that help me. What are some other ways you deal with your Fibromyalgia?

Please let us all know so maybe you can help someone else feel better today.

As always let me add, I am not a medical professional any advise or options expressed are not medical advice. These are my disclaimers.

Kindle Resources

In the mood to read?

There are several books offered on Amazon for the Kindle. The books I am talking about are also free with your Kindle membership. If you do not have an unlimited membership several books are still very affordable. If you are paying out of pocket for every book then collections are probably your best bet. I found this title Free from Fibromyalgia Books 1-5 Master Collection Kindle Edition which is by Tricia Duffy to be of interest. Tricia Duffy has written several books on Fibromyalgia for the Kindle.

If you are more interested in a personal story then I would try Pain-Free: How I Released 43 Years of Chronic Pain. This book is written by Dottie DuParcé. As far as I can see this is her only publication. But for $3.99 or free with your Kindle membership it would be great to see how someone else who has years of experience, deals with their pain.

Relationship Books

Are you looking for a free resource for your marriage on kindle this may be of interest to you. This book with a Kindle edition is called, Marriage on Mission: How strengthening your marriage multiplies your missional impact. 

Running on Empty No More: Transform Your Relationships With Your Partner, Your Parents and Your Children, this sounds like an amazing book for something that so many of us with Fibromyalgia have been dealing with.

Knowing your partners and your love language is a very important tool. Take the time to read this today. Knowing what is the best way to communicate my love to my husband has been a great tool in him always knowing how I feel about him. The 5 Love Languages: The Secret to Love that Lasts.

Why we need each other

With something like Fibromyalgia we must never stop educating ourselves. There are not many people who what it is we actually have. We now have a name when for so long many patients did not have a correct diagnosis. My Grandmother was told her Fibromyalgia was different things over the years. The medical community did not have a name for Fibromyalgia. And yet still today many in the medical profession do not understand it. That is why it is important for us with Fibromyalgia to never stop talking to each other. Learning from one another is our most powerful tool.

Looking on the Kindle app for any personal experiences or research done by fellow Fibro patients is our most important tool. I wish doctors would see it that way too. Maybe then Fibromyalgia would no longer be such a mystery. Many of us have found out that nutrition does play a vital factor in the pain, exhaustion, and cognitive function we experience every day. Yet many doctors do not believe what patients are telling them.

Something I changed

The most I hear about nutrition from others is a diet high in plant-based food is what helps them. I chose to start my journey on the road to vegan and eventually WFPB (Whole Foods Plant Based) because of research was done by my husband and me. Once he said he would eat this way too we started our new lifestyle, gradually. Giving up certain foods like dairy was the hardest but it took me less than 6 months to do. I gave up meat first, I noticed my amount of pain was less. My cognitive function was better too.

When I took out dairy my whole life changed. My hormones became a little more balanced. My digestive system operated better. My pain, exhaustion and cognitive function all improved. I am also a more positive thinker, without trying. I smile more, without thinking about it. While I am out of the house I smile at strangers and even give compliments to those I do not know.

My next food battle is oil or salt, I have not decided yet. I will eventually reach my goal though.

Never stop trading information and seeking education about your diagnosis. You never know what will help you conquer it all.