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.

Socializing with Fibromyalgia

Impossible to socialize

The reasons we can feel as if we can not socialize can be an overwhelming amount. I have to bring this for comfort, I can’t eat that, not drinking alcohol, exhaustion, fibro fog. The list can go on and on. However, the problems with us socializing do not lay all on us. We have to change the way we do everything during our daily struggle with Fibromyalgia. Which would also include socializing. Yet many people who do not have Fibromyalgia do not seem to be able to believe our problems are real. Just because Fibromyalgia is not visible to the naked eye, does not mean we are lying.

One possible way to help

Unless it is an event that is a milestone marker, (wedding, anniversary dinner, baptism, birth, funeral, etc.) I stay at home. Kids birthday parties are not on my list of must do’s. Every year we have a small family affair for our kids. Sometimes they will get a party with other kids but the number of kids is very small. We will usually limit it to the kids by our house. It is a bonus for us as well since we know the parents. (A very easy way to socialize is to get to know a neighbor.) We do not do it this way because I dislike children but because all the noise and activity is too much stimulation for people with Fibromyalgia.

How I get through the social issues

Through this whole struggle, I have never cared if anyone accepted my illness, as long as they respected it and my limitations. Getting into a debate on whether or not it is real has never happened to me. (Not including Doctors, I have debated with them.) Through support groups I have found out not having to defend yourself is not normal, which is horrible. Let me apologize for all of the mistreatment you have received from anyone because of your Fibromyalgia.

I am very lucky in this way I do know. My own family has multiple people with Fibromyalgia so no one in my family has ever said my illness is not real. My husband’s parents have both been very accepting of everything. They listen to me and try very hard to be very accommodating. This next year we will be moving across the country closer to my husbands family and my Mother-in-Law has already agreed to throw our seven-year-olds birthday party.

She is great at throwing parties for the kids so when I know we will be with her sometime close to one of our kids birthdays I let her have her fun and invite everyone she knows. All of my In-laws on the east coast have been very accepting of all the limitations I have. They ask me questions just so they can make sure I have things to eat or that I am comfortable.

What we can do for us

Due to the way Fibromyalgia sufferers have been treated by some, we all need to ban together and meet one another in person, even when we aren’t feeling our best. Because we all need people who underLets come together to socialize in person.stand and care. There are many places we can look for this opportunity at meetups.com and groups on Facebook. I myself have started a group in my local area. Posting things on Facebook is all well and good but that old fashioned face to face communication is the best!

Who wouldn’t love to meet at a coffee shop and get to know someone? Have someone to get manicures with, who understands why you called them last minute to schedule. Create a book club who all understands why you did not read what you all agreed on to discuss this week. I wrote a post about taking care of yourself that just might help you with ideas on what to do and maybe even find new friends.

Why should we feel all alone? Especially on our really hard days. Many of us have friends who have left us. We need to start a movement of action, meet the people you need to start feeling better about the way things are.  

All of us are capable of more than what we think we are capable of. Don’t keep yourself down with self-doubt or thinking you can’t do something just because you have fibro. Keep trying, even when it hurts. If we all came together to push each other to live, all of our lives might be easier to live.

Life can be an amazing adventure but it is nothing if we feel as if we are stuck in a chair or our bed. Sitting and laying around is not living, at least not for me. I want more out of life than seeing the same walls, tv shows and faces. I start to feel like I am in a prison when I do nothing but stay home with my pain. I have noticed that going outside helps me, being active in any way helps me feel better and be better. 

I am going to start a socializing pledge. I am going to become parts of groups that go out or have gatherings of different sorts. As well as engage with someone one on one once a month. The one on one time will be in addition to the gatherings with groups. 

Last week I was invited to a potluck lunch. I am very glad I said yes and stayed. I met several new acquaintances and one that I believe will turn into a friendship. 

What pledge are you willing to take for your socializing happiness? Make sure to leave your pledge in the comment section of this post. I am excited to read your pledges and also the outcomes of your pledges.

It has been said that people who exercise and socialize are actually happier and healthier, especially as they get older. So join me in making your life healthier by adding more friends to your life.

 

 

What is Fibromyalgia

What it feels like to have fibromyalgia

Fibromyalgia

What is Fibromyalgia? That is a question that when searched on the internet is improperly answered on most websites. So today I went in search of a credible website that gave a proper answer. Because most websites are very misleading when giving an accurate account of Fibromyalgia symptoms. All that is barely discussed is the pain we go through. They say we have widespread pain and joint pain. The side effects of Fibromyalgia are much more than just pain. Although I am sure anyone with Fibromyalgia would say the pain is more than enough to deal with.

Most websites I have ever come across leave out very important side effects. So if a spouse or someone who is undiagnosed went in search of answers they would be improperly informed. Most websites leave out the mood changes, lack of energy, sleep deprivation, and fibro fog or brain fog among others. These are very important side effects that inflict those with Fibromyalgia on a daily or almost daily basis. They also affect the loved ones who are searching for answers. Everyone with this medical condition suffers differently. The severity of the side effects and how much certain side effects affect us can also be different for each person dealing with this.

What is FIbromyalgia?So what is Fibromyalgia?

I have found a great website for explaining things, the Arthritis Foundation.  Since their explanation is so great I will leave it to them. They explain what it is, what you can do to take care of it, prescriptions offered and also why prescriptions are not a cure. I agree very much with everything I read from their website. I believe they have put an explanation of our condition together very nicely.

My own experience

Through my own research, I have found a couple of things that really help me. They are things that most people say they at either unwilling to do or can’t do for one reason or another. I find when someone is ready to get better they will try anything they have to. Until they are ready they cannot be pushed into anything.

Some things I treat my Fibro with

My favorite ways to treat my fibro is through exercise and nutrition. I am not talking about extreme fitness. For some reason in America, we believe more difficult or extreme the better. But that is not the case at all. A walk can be more than enough. Lifting light weights and moving the body part that is in pain for a period of time is a great option.

If I wake up in the middle of the night I will roll out my exercise mat and pick up the heaviest weights I have in my room. I then lay the weights on each side of me and I lay myself down. Then I will do chest work first because lifting the heavyweight will usually get me ready to sleep faster. If I am still awake after I have finished my chest workout I will grab a resistance band, put it around my calf and do leg exercises I can do while laying down. This is just an example of what I do. Not everything I do for my fibro is listed.

With my nutrition, I first started with supplements. I am not a healthcare professional so I turned to a book. I was raised with natural care and as I started raising my own family I decided on natural care too. Because whichever creator you believe in we were created naturally so why are we treating ourselves with man-made drugs? Regulated or not we do not need the drugs to live with Fibro. There are actual studies that say the pain-killers make our pain worse. I turned to the pain-killers for my first year of diagnosed Fibromyalgia too. So I know how people who use them feel, you want the pain gone, you just want to not feel for a while. Pain is exhausting, it changes your mood and who in the world wants to be in pain anyway??

I hope this helps.

After the supplements, I started on changing my food. This is the book I started my natural journey with.

I hope this post has helped you with the link to the Arthritis Foundations, What is Fibromyalgia. If you decide to try the natural way of healing I hope you can find things in the book I suggested to help you make your life better.

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