The 6 Stages of Fibromyalgia

Stage 1

You’ve started to feel more pain and fatigue than before. You’re not sure what’s going on, but you’re in pain and you’re tired.  You can hold down a job, you can go about your day, but you know something’s wrong… so that’s something you’re going to start looking into.

Stage 2

You’re in a lot of pain, sometimes you take an anti-inflammatory or something.  They don’t give you much relief, and you’ve accepted that this is something you’re going to have for a while.  You’re in a lot of pain and exhausted almost every day, but most of the time you keep going and hold down a job, you can still go to events, spend time with friends and loved ones, and have a good time here and there.

Stage 3

You’re in constant pain, you’re constantly tired, and you wonder if you’ll ever be able to function normally again.  You consider not working because you don’t have the energy you used to have. You come home from work and all you can do is rest.  You have to decline invitations; you have no energy left and you have to rest just to come back tomorrow.  At this point, you start to feel more alone, and more and more people start to think you complain too much.  This stage can last a long time, maybe years.

Stage 4

You’re in constant pain, the good days are few and far between.  He calls in sick more than he still does.  You’re in bed for a good part of the day.  When you have a good day, you make the most of it and do as much as you can, all the things you’ve had to cram into your day in the last few weeks, knowing full well that tomorrow will pay off.  His flare-ups last for days.  At that point, your friends make plans without you; they already know your excuses and are almost certain you won’t be able to make it to the hotel.  Your family begins to think you’re using fibromyalgia as an excuse not to do things, because in stages 1 to 3, you were able to do many things that you can’t do now.  They think you’re using your illness as an excuse,  feeling alone, isolated, worried, emotional, and sad.  This stage can last for years.

Stage 5

Since you were laid off or quit your job, you’ve been wondering about permanent disability and how long it takes to get it.  You’ve heard horror stories about people who refused and the years-long process.  You’re struggling to make ends meet.  Maybe having a caregiver.  You spend much of your day in bed, although you still enjoy a good day every now and then.  You’re in pain, a lot of pain, a lot of crying, and feeling trapped in your own body.  You’ve now explained to your friends that it always feels good to be invited over, even if you don’t go.  You’ve found that the only people you can relate to are in a similar situation.  You wish your friends and family could understand.

Stage 6 (the final Stage)

You may or may not still be waiting for disability benefits.  Unable to hold a job.  Fibromyalgia is now your way of life, most of your friends live with fibromyalgia themselves, everything you do takes all your precious energy, the simple daily tasks you took for granted in the beginning, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes, taking all it can give.  It is irritated by hair or clothing touching his skin, he has no energy or desire to put on his “face” before going out, no energy to keep a clean house.  With all the medications you are currently taking or have tried, you are dealing with side effects and constant pain.

You’re human, and you still enjoy certain things, like watching television.  We try to stay up-to-date on any developments regarding fibromyalgia, in the hopes that they’re closer to finding a cure.  Most of your old friends are gone; they have things to do.  You need to get a lot of rest.  It’s easy to feel overwhelmed at this stage, as things pile up around you: bills, laundry, dishes.  You do a little every day, pushing yourself so it doesn’t feel like your day is wasted in bed, and feeling guilty that you’re no longer pulling your own weight around the house.  Your children, spouse, or a family member will do things more than ever.  They try to do it in a pleasant way, but it still feels like a burden. They can’t remember anything,  can’t recall names or dates, and lose their train of thought mid-sentence.  We also know more about fibromyalgia at this stage than you do .