Fibromyalgia is a subject that limits each post to one thing usually so you will be seeing more posts on different items from me in the near future. Glad you found this whether you are a sufferer like myself or a family member or friend of a sufferer.
Ten years ago I was diagnosed with Fibromyalgia and IC ( basically fibro of the bladder ). I realized the other day I have lived every day in pain for a minimum of 10 years. I have come to the conclusion that pain is a relative term, each person who has it feels it in different ways and Fibro is no different.
Fibromyalgia is pain that can’t be explained to other people in an intelligent way. I have tried to and yet, I can’t quite come up with one that really tells someone how to understand it.
Every day with this disease as with other diseases can be different and in a different place, it is a sick game of surprise where you never know when the pain will move and where will it will be tomorrow. This syndrome is not even explainable by scientists unless they actually have it, in that case, they probably have issues explaining it as well.
The most mind boggling part of this is we don’t look sick, People with fibro have no signs or signals, we have no marks or scrapes, pain is invisible. With this can come sleep problems and other things as each of us share some of the same issues and others we do not. Some have the physical issues that come with this diabolical disease the atrophy of muscles, other more serious arthritis, and this list goes on.
I can tell what I have learned through my story and I hope that helps friends and family understand how their friend or loved one lives. Those who haven’t got Fibro are completely in the dark, one day you have that person and they are able to do ok the next they can barely walk. People like myself don’t understand it. Yes, there are a lot of big words and false health gimmicks that claim to get rid of it like fad diets, underground doctors who can give you antibiotics for a large price etc.
You have no idea what kind of game it can be with health professionals and PHARMA. These along with holistic remedies can all work, and they can work together but please always be careful, there is no magic potion to fix this. There are ways to help yourself and they can help make a big difference, but no funky money making ideas that have the only answer. I finally just got damn mad when all I heard was crazy ideas and no answers.
This is why if you have fibro you need to fight like your life depends on it because guess what? It does.
So when asking Doctors what is wrong with me and why the answer is usually well it is a soft tissue arthritis and we are unable to treat it without the cause and there is no known concrete cause. Then they write you a prescription and tell you they will see you again in 3 months and hopefully someday but probably not in my lifetime they will figure it out goodbye we will see you later. Then all of a sudden a news story is written that says in big letters Fibromyalgia appears to be caused by too many nerve fibers and normally is more painful in the feet or hands. Wow, what do they want us to say? Hallelujah, Kum-ba-yah, or just a great big silence from us so they can go back to figuring out what to say about the next disease with no cure.
So, if we are going to survive as a fibro suffering community and our families then we need to finally spend some of the time in pain on being angry and I mean life changing, raising the roof on the house angry at this disease.
We are simply regular people in all types of professions many on disability or Medicaid who have lost their lives and now cant get them back. But we can take back our power don’t let this disease have it anymore we have given enough time to that. It is time to live the best that we can. Everyone is different and some of us are in wheelchairs and have lost the ability to walk, or our lungs are getting weaker, and the list goes on. The doctors no matter how good they are will tell us that it won’t kill us, wow that is a relief, but the pain will not go away (spoiler alert).
So whatever we do we do it so we can live a life. Maybe not the life we dreamed of and then maybe we can have that life. As long as we are in this together as a sufferer, and the loved ones around us we can push through this disease providing support and love until little victories become so much larger because we are fighting for our lives.