Fibromyalgia is generally recognized as a progressive condition that can change over time. In 2014, Angela Wise wrote a Facebook post in which she outlined the 6 different stages of fibromyalgia based on her personal experience.
Important disclaimer: everyone experiences fibromyalgia differently and not everyone experiences drastic changes over time.
Stage 1 – You start experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired. You can hold a job, you can make it through your day, but you know something isn’t right… so it’s something you’re going to start researching.
Stage 2 – You are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. you feel a lot of pain and you are exhausted almost every day, but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones, and have some good time here and there.
Stage 3 – You are in constant pain, you are constantly tired, you wonder whether you will be ever able to function normally again. You are considering not working, because you no longer have the energy you once had, you come home from work and all you can do is rest. You have to turn down invitations, you have no energy left and you have to rest up just to go back tomorrow. In this stage you start to feel more alone, and more and more people are beginning to think you whine too much. This stage can last a long time, perhaps years.
Stage 4 – You are in unrelenting pain all the time, good days are few and far between. You are calling into work sick more than you even make it in. You are in bed a good portion of your day. When you do have a good day you take advantage of it, and do as much as you can, all the things you have left in the past weeks you cram into your day, knowing well that tomorrow you will be paying for it. Your flares last for days. By this time your friends make plans without you, they already know your excuses and are nearly certain you will not be able to join in. Your family begins to think you are using fibromyalgia as an excuse to not do things, because stages 1-3 you were able to do much of what you just can’t do now. They think you are using your illness as an excuse, you feel alone, isolated, worried, emotional, sad. This stage can last years.
Stage 5 –You have already been let go or have quit your job, you are asking questions about permanent disability and how long it takes to get it. You have heard horror stories about people being denied and the process taking years. You are struggling to make ends meet. Maybe have a person who takes care of you. You spend a lot of your day in bed, although you still take advantage of that one good day once in awhile. You are sore, very sore, you cry a lot, you feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go. You have found that the only people that can relate to you are in a similar predicament. You wish your friends and family could understand.
Stage 6 – You may or may not still be waiting for disability benefits. You cannot hold down a job. Fibromyalgia is now your lifestyle, most of your friends are living with fibromyalgia themselves, everything you do takes all your precious energy, simple daily tasks you took for granted in earlier stages, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes, take all you can give. You get irritated by your hair or clothes touching your skin, you have no energy or desire to put on “your face” before going out, no energy to keep a neat home. With all the medication you are on now or have tried, you are dealing with side effects and constant pain.
You are a human and still enjoy some things, like watching TV. You try to stay current on any news regarding fibromyalgia, in hopes they are closer to finding a cure. Most of your old friends are not around anymore, they have things to do. You need to rest a lot. It’s easy to feel overwhelmed in this stage, because things are piling up around you: bills, laundry, dishes. You do a little everyday, you push yourself so you don’t feel like your day was wasted in bed, you feel guilty that you no longer pull your own weight in the house. Your kids, spouse or family do things for you more than ever. They try to do it in a nice manner but you still feel like a burden, you can’t remember anything, cannot recall names or dates and you lose your train of thought mid-sentence. Also you know more about fibromyalgia in this stage then your own doctor and basically laugh when trying a new medication. You are without hope, same drill as before, same results, nothing helps much.