What people with Fibromyalgia want you to know

Things People with Fibromyalgia want you to know

1. We are always tired. It doesn’t matter if we fell asleep at 8 p.m. and woke up at 8 a.m., chances are we are not waking up feeling refreshed even after those 12 hours. Our “sleep” isn’t as good for us as for someone not suffering from this disease. We toss and turn in desperate attempts to find positions that are comfortable, we take forever for our minds to turn off, and often times we wake up at least once during the night.

2. We are always in pain. Every morning I wake up stiff and in pain. The pain isn’t the same level or even in the same place each day; some mornings, my left side of my body is in pain, other mornings it’s my right side. It could be that one morning I wake up with leg pain or with neck pain. The pain can last all day or for just part of the day. Sometimes, the pain will just pop up in the middle of the day for no reason at all; I have had days where all of a sudden, my thumb will start to hurt as if I closed it in the car door. I have had days where my foot feels broken and then a couple days later, the pain is gone.

3. We often feel sick. Literally I have felt like I was coming down with a cold or even the flu. I would feel it “coming on” for days or even weeks and then it just goes away. It never evolves to anything, just the beginning stages linger for however long. There are days where I feel so drained and nothing helps and I am for sure that I am legit sick, but it’s just my fibro acting up.

4. There is no “resting” with fibro. Honestly napping and laying down can make somebody with fibromyalgia feel worse . I have found that being in motion actually helps with the constant pain. It seems that when I sit down or lay down , that's when I will start really feeling the pain and discomfort of having fibromyalgia. For example, we walked around for at least two hours on Halloween, and I honestly felt fine until I sat back in the car to go home. Almost immediately I felt like I had been hit by a truck.

5. We can be moody and easily irritated. This is because we are constantly tired and in pain. I know for myself that I do not mean to be rude to people, and I really do feel bad when I'm giving people attitude when they don't deserve it, sometimes the pain and discomfort is just too much. It's even worse when I am going through my menstrual cycle, as this time of the month is more painful and uncomfortable for me due to the fibromyalgia.

6. We don’t feel normal. Whether you are young when you are diognosed or you don't get diognosed until later on in your life, once you are told you have fibromyalgia you don't feel normal. You never felt normal before the diagnosis , but even when you are told why you have felt the way you did for all that time it doesn't make it any easier to accept. Knowing that this is a silent disease and one that does not have any sort of cure, depression and anxiety tend to take over an you start questioning a lot of things.

7. We need to be understood, and our disease needs to be understood. If we tell you that we do not feel like doing something or going somewhere , please don't think of us as being lazy or antisocial . An if we decline doing something that we have done in the past just fine, please know that the longer you have fibromyalgia, the worse you start to feel. Being there is no medication that can be given to help deal with this disease , each person who has this disease needs to find ways to manage the symptoms because that is the only thing that can be done. It's important for family and friends to do their own research about this disease so they can have a better understanding of what we're going through.

8. There isn’t much physical evidence. Many people with fibromyalgia are not going to look like there is really anything wrong with them. When somebody has a broken bone you can clearly see that they broke their bone , when somebody with fibromyalgia says that they feel like they've been run over by a truck, the pain is internal and not external. Honestly the only thing we will be wearing on our sleeve is fatigue and sometimes not even that. I understand that it's hard to feel sympathy for somebody when there is no physical evidence . But since being diagnosed with fibromyalgia, I have learned that not every ailment will be able to be seen.

9. We aren’t lying about our disease. The diagnosis of fibromyalgia comes from the list of symptoms and how long those symptoms have been present , along with 18 points of the body for the pain. Somebody with fibromyalgia needs to have stated that they have constant pain in at least 11 of the 18 points of the body. When rheumatologists are given a list of symptoms and the longevity of the symptoms and also the pain points, then they can diagnose the fibromyalgia. Even the joint pain , which would indicate inflammation , will not show up on blood tests. But the pain is very real and it is very constant .

10. Sometimes we need help from others to feel better. I feel it's important for people suffering from fibromyalgia to figure out how to help themselves manage the pain and discomfort. But honestly, sometimes being taken care of by somebody else can help with that a lot more than when we do it ourselves. If somebody you know and love is having a very bad fibro day, see what you can do to help make them more comfortable until the fibro flare up goes down. remember that there is no cure for this disease and no medicine. It's all about managing the symptoms to try to make it through the day , and sometimes we need a little help. Yeah going I know it sucks