For me I wake up in pain with about two hours of energy in the morning and then crash and burn with pain everywhere. Pain in neck, shoulders, back between shoulder blades and lower back, pain in my rib cage - crushing and making it difficult to breath, pain down my arms and both legs upper thighs inner and outer and shins front and back of calves, Headaches off and on and migraines. I hurt when I walk, sit, lie down - it never eases off - but in the morning I do have a little more energy. I think it is because I fight the pain more when I am awake. When I sleep I dream about getting hurt and then wake up in pain. I do believe that stress adds to the pain and probably when we are awake during the day we have more time to think about the pain and probably worry about not being able to function which then adds to the stress which adds to the pain. It is a vicious cycle.

Good question! I imagine it's different for each person. For me it's mostly about my head space. There's definitely pain and fatigue everyday but if there were enough positive moments or smiles I still feel like it was a good day. Maybe we look for those moments more than others without chronic pain or struggles? Bad days are usually when I can't get basic things done or miss out on important events because the body won't cooperate. Having to surrender to pain takes me down fast! I'm trying to learn stress from frustration only fuels more pain, try to be ok with those days and hope it'll be better the next day. Believe me, there are tons of days there are big baby fits too... luckily the people here all relate to each other which helps from feeling alone and isolated. It's been beyond helpful to get to check in with people who truly understand. There's definitely good, bad and so/so in every day. Hopefully there's enough good to cancel out the rest.

That's the same for me. I consider a good day when I the pain has been more manageable or doesn't kick in too bad until I have done the things I need to (work, housework, etc.). There is always pain and it is never in one place. I've taken to wearing wrist warmers when my hands are sore, but it is just a sharp throbbing pain that last a few mins to a n hour then it goes elsewhere, knees, ankles etc. I always have tightness in my shoulders an back so whenever I am done for the day (sometimes 5pm sometimes 9am) I use tiger balm to try to loosen the muscles cause if I don't I will get a migraine.

Basically, there is no normal or abnormal with this pain, everyone experiences it differently, but just know that very few people actually have good days meaning no pain or fatigue, they mean they had a manageable day or a mostly manageable day.

I too can start out having a good day only to find myself half way though the day fatigued and in pain all over. Ive learned to pace myself and not do too much . I think overexertion is part of the reason for me

This is me completely. My neck and shoulders have gotten so incredibly bad I'm hardly able to turn my head. This makes driving next to impossible, It's very hard to turn the steering wheel much less look both ways. It's always something else we take for granted that I find out I'm either unable to do or I struggle to do. It's as if this disease takes all of our independence away and sucks the life out of us!