Looking back (before I was diagnosed) my pain was pretty much localized in my neck/shoulders area. Then I started noticing my arms hurt. I couldn't figure out what I'd done to cause the pain.

THe next thing I noticed was that when I'd wake up at night, the side I was sleeping on would hurt terribly.

So after I got the fibro diagnosis, I started becoming more aware of other places hurting. Then gradually it's gotten to where I hurt over the majority of my body. But this was all progressive.

I can't answer for everyone else, but that's the way it was for me.

i think that once upon a time my pain was primarily my lower back and hips. then it spread up to my shoulders, then my legs and feet, than eventually my arms. i think that i pretty much always have SOME kinda of ache going on, but my lower back and hips are still the worst.

I have pain all over too. I do for some reason feel like the pain in my neck and back are the worst. I was going for tender point injections at my neurologist but I stopped because the shots hurt and they didn't last very long.
Prayers and hugs, Annie528

I had upper body pain only for the first year or so - it started in my hands, then neck, then sternum. Then the whole body became painful and has stayed that way for 8 years.

I'm in the first year too, and mine started in my hands and wrists and fingers, but it also likes my legs and that spot over my sternum. My mom, who also has fibro, also seems to have mostly wrist pain but she's had it for longer so I don't know what her original status was. My pressure points are almost always sore though....

Any kind of pain, localized or generalized, can be debilitating when it haunts us on and off all the time.

Looking back, I believe I've had fibro since early childhood, the light sensitivity, screaming at my mom and siblings to "turn of the sun" because it hurt my eyes, migranes at 2, 3 yrs old, my "hair hurting" which used to crack my doctor and family up. Aches and pains. Then, RA diagnosis at 10yrs old, after which I had pain all the time, but not everywhere, and not constant.

Unitil 2, 3 yrs ago, I was able to somhow function without going to the doc and taking meds. Two yers ago, the pain and the fatigue became constant and everywhere, and my "quest" to find help began. I had no idea what fibro was, I just thought my RA was getting really bad. Funny thing, now, I have sero negative inflammatory arthritis thing because no RA factor in my blood. Funny.

Anyway, like others have already said, it does not have to be everywhere, all the time, it more all less builds up gradually, and it's different for everyone. Since you have the tender points everywhere, then, it's most likely fibro, but the tender points only hurt when pressed, they don't have to be hurting all the time. Sometimes the areas around tender points happen to be hurting all the time, but it's different.

The only thing from the diagnostic criteria is that the pain has to be widespread, in all 4 quadrants of the body, left, right, top, bottom, but it does not have to be all the time and every single inch of your body.

Sorry for the rambling, not running on all my cylinders today. lol

Also, just because it gets really bad for some, doesn't mean it has to get so bad for you. Hopefully, with treatment, it never does get to the point for you where you hurt everywhere all the time.

I'm not sure about your situation, but if your doctor(s) did all the testing to rule out all the many things that have similar symptoms to fibro, like ms, ra, and many others, fibro seems fitting. Pain around neck and shoulders, and low back seems to be the most common. unfortunately, many here have fibro plus something else, but it does not have to be the case, and it does not make fibro any less painful and challenging.

I hope you are having a great day. Take care and if you have any more questions, concers, or just want to vent, please do so. If you don't want to vent on the main board, I'm always here to listen. I've gotten so much help from others here and will be happy to help you and whoever else needs it.

Especially in the next two weeks or so, I'm on FMLA , so I'm sure once I feel much better, I'll be bored out of my mind.

I don't have pain in my eyebrows and nose....LOL, no really.

I have pain everywhere but not everywhere at the same time. It moves around

I have had fibro for about 15 + years it started in my limbs, hands, feet, then knees, elbow, shoulders then muscles. As the years past the pain got worse. A couple of years ago it exploded excruciating pain all over. Like Js36 said even my hair hurt!!
Between the pain and fatigue I could barely get out of bed long enough to potty. It may have been a 2 year flare but things are much better now.
The weather and over doing it prompt flare ups now.
I hope you conquer this beast before your symptoms become more than episodic.

My all over pain pretty much started all at one time. I had tendonitis in my ankles and right wrist but didn't get the fibro for a few years later.

I think that everyone's pain is different. There is a lot of people with all over pain, myself included. But don't let that make you think that is what you are doomed for. It just took that much pain before I paid attention to it.

I think it may be very beneficial to you that you caught it in this stage and with proper self care, appropriate Dr.'s and meds if needed, you may keep it at bay.

Best of luck and being on this site for support is great!

Selena

Most of my pain is in my neck, shoulders, and back. I get random pain everywhere else.

You all have been immensly helpful. It has helped ease my mind a little.

Thanks everyone

I have pain all over all the time. It varies in intensity though. I can't figure out what causes it to be so bad some days over others. But yeah, pain 24/7 all over pretty much describes it.

Mine varies a LOT. Sometimes I am sore all over, like my skin is sensitive. Other times it is far more localized, most often in the neck, shoulders, and hands. Sometimes I get it in the lower back and hips. The intensity of my pain is VERY tied to stress. It is manageable if life is rosy and I only do activity in small bursts and rest frequently, but if I get stressed out badly I am down for the count for a few days at least. And that is hard, because it makes me feel like a total wimp. :-(

I agree with fibrolizzy! But everyone is different. I had lower back and hip pain, migraine headaches along with the neck pain. I also feel pain on whichever side I am sleeping on. It started with my hips but now is also my shoulders and it travels down my arms. I also have the restless leg syndrome some nights. Unfortunately nothing seems to work for me. Hopefully something will work for you. I take Benadryl at night most nights to get some sleep. The pain usually keeps me awake so the Benadryl helps me somewhat. I also take a lot of ibuprofen which is not good for the stomach. Alternating hot and cold compresses can help. I hope your pain slows down!