Note: May 12th Is Fibromyalgia Awareness Day.
Maybe you cannot pronounce it, maybe you don’t understand it. Just know one thing. This is REAL and too many mostly women are living with it. It is called Fibromyalgia. I will also reveal the number one tool that has helped me the most in dealing with fibromyalgia but first some reasons why it is so difficult to treat.
Different Levels Affecting All Areas
There are all levels and it affects all areas. Fibromyalgia is a Central Nervous System Sensitization Disorder. This is why it is so difficult to manage.
Add Perpetuating Factors To The Mix
To best explain ‘Perpetuating Factors’ Devin Starlanyl Initiating, Aggravating And Perpetuating Factors Description click on the link. She has by far the best explanation and has written books as well.
Once one can ‘Identify Perpetuating Factors’, that is when the work begins at getting rid of them. This is so much harder than it sounds. Take it from me who has been diagnosed with it since 1989.
For the past year I have been reading up on how almost every illness happens in the gut. To rule this out, I have gone grain free, gluten free, almost dairy free (I eat yogurt/frozen and will eat cheese from time to time), sugar free, and junk food free. Yes, I slip every once in a while because this is such a restricted diet.
After Three Months On Dietary Changes
I can say I feel somewhat better. May that as it be, I still hurt, have sleeping problems and chronic fatigue. I have not reached the level where I can live a somewhat normal life because of these perpetuating factors.
Gearing Up To Seek Out Doctors Who Will Listen Again
It has been about four years since I have actively pursued ruling out other illnesses that can mimic fibromyalgia. In order to do this I have had to grow a thick skin metaphorically speaking. Part of the problem is when a doctor doesn’t know, he or she won’t come out and say they don’t know and refer you on to someone else that may possibly know. THAT’s where many of the problems are found making it difficult to seek out a cause and be provided the treatment one needs to begin to get well.
The second part of the problem is if you seek out different doctors for various areas of your health, there is no guarantee that the doctors will consult with one another to help you solve your fibromyalgia. What is one to do then?
The #1 Tool That Has Helped The Most Is…
If you want to get to the bottom of this, I am here to tell you none of it is an overnight cure all. That said, there are many things one can do.
Get yourself a notebook/binder that will be your number one tool. Keep all of your health information, lab tests together and become your very own detective. It is the best tool out there today. The notebook/binder assists you in ruling out all possibilities.
Why Am I Ready To Battle The Purple Monster Again?
I am sick and tired of being sick and tired and I simply won’t stand for any doctor to say it is all in my head. Of course it is all in my head! It is a Central Nervous System Sensitization Syndrome. The article explains it well.
That said, I will not stand for any doctor who believes it is emotional for the sake of it being emotional. Of course it is emotional! Not being able to live the life you had planned and being able to have all the opportunities that other healthy individuals receive is going to make a person emotional.
No one asks to get Fibromyalgia like no one asks to get Cancer. The difference between the two? Cancer has a cure giving you the opportunity to get better. Fibromyalgia does not. If not treated properly, both disease and syndrome have one thing in common. You can die from them. Usually with Fibromyalgia it will be the perpetuating factors that will be the cause as many who have fibromyalgia can simply die of a ‘Broken Heart’.
To the ones that don’t understand fibromyalgia, give your friends and family the benefit of the doubt. If you don’t understand it. Tell your loved one you don’t.
Finally the best thing you can do to help your friend or family member is to be patient and compassionate. When you have plans and the plans fall through because they are hurting, don’t start not asking to do things with them. Just be prepared that it may be a bad day. Just like we don’t know when we can get bad weather again from the next system that passes through, it is the same for fibromyalgia. AND get this… The two are correlated together. It has everything to do with the barometric pressure.
How Do I Know What I Know To Date?
It is simply a matter of jotting notes down into a notebook/binder to collect information in hopes of solving your case. I no longer want to be talked down to. I have wasted so much of my life hiding. Hiding from ones that don’t understand, hiding from myself because I don’t know what to do next, and finally hiding from life. The latter is the one that hurts the most.
Today is Fibromyalgia Awareness Day. If a friend or family member wants to let you know about the awareness day, stop what you are doing and ask them, “What can I do to help make your journey to find the answers related to fibromyalgia?” Most will say to understand that you may not understand fibromyalgia and that’s alright.”
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