What does it mean when you are told you have Fibromyalgia.
Well technically it means that you have a chronic illness that causes widespread pain throughout the body and severe fatigue. People with Fibromyalgia have “tender points” on the body. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs. These points hurt when pressure is put on them.
It is also believed now due to certain studies that overactive nerves cause the muscle pain of Fibromyalgia which is far different from other pain conditions.
The good news is that Fibromyalgia is being researched because it is one of the most common pain conditions. Also, there are now at least 3 FDA approved medications to help treat Fibromyalgia pain.
The bad news is there is still no cure and many Fibromyalgia sufferers also suffer from medication sensitivity which either makes the approved medications not work or cause some really unpleasant side effects.
In reality what having Fibromyalgia means is waking up most days feeling like a Mac Truck hit you. It means struggling to get out of bed and be functional. It means forgetting words and conversations, (Fibro-fog is a lot like having dementia sometimes). It means often not being understood or people thinking you are “faking” or “making things up”.
It also means YOU have to be your own best advocate with your doctors. You have to do the research and make sure you are well-informed. You have to tell your doctors exactly what is going on and often that means writing it down in between appointments. A new trick I’m doing now is keeping a daily health journal so that my doctor can see what I go through every day, both good and bad.
It means being tested for anything and everything over and over and over OR it means hearing the words “It’s just a part of your Fibromyalgia” all the time and never being taken seriously.
It means most days you won’t be able to do all the things you once could, but on rare occasions having the ability to do “too” much and then paying for the one good day for days to come. It means learning your own limitations.
And quite honestly it means learning to live with the pain. So many doctors won’t even see chronic pain patients anymore and even if they do they are limited in what they can or are willing to do. Sometimes (more often that I like) it means feeling like a guinea pig because you are testing new meds to see if they help.
It means listening to the unending “well intended” advice from other people about how to deal with your symptoms, or the not so “well intended” opinions of those who have NO IDEA what you are really going through.
My best advice for those diagnosed with Fibromyalgia is find a good support group either in real life or online. Talk to others who suffer with the same thing. Sometimes it helps just to know that someone else understands and is going through something similar. It helps to know you aren’t really crazy, like many others may make you feel.