For me it's the insomnia and constant day time drowsiness.... and then there's the part where I can't think straight. All of it makes my pain worse. You just can't function that way. And then pain is really sneaky, it just sneaks up on you right in the middle of doing something. Then you have to stop everything, just quit and go home for the rest of the day. I guess there's a lot about fibromyalgia that bothers me.

If you had asked me that question three years ago I would have said unrelenting pain and fatigue; however, I have gotten pretty good control of the pain and fatigue except for periodic flare-ups. As long as I follow my regimen strictly, I can usually keep the pain and fatigue under control. Today, my most disturbing symptom is the constant unrefreshing sleep and stiffness. I sleep and sleep and wake up unrefreshed constantly. I have forgotten what it feels like to wake up feeling refreshed. I also don't remember what it feels like to not experience stiffness.

There are so many to choose from! The fatigue and general 'off' feeling get me the worst, then again it could be the new random shooting pains that travel around. Or the dizziness, that one is definitely a doozy. Ok so it's REALLY hard to choose just one, or even two!

I have to say though, the emotional toll it has on me tops all of the physical stuff. Depression because I can't do all that I want to do with my body. Anxiety because of the new and worsening pain, wondering how long it will last. Then finally the guilt I feel when laying down in bed is the best thing for me on any given day, while my dear Husband is left with the household chores. :(

This is a great thread! Keep it up.

~Stephanie~

Brain fog leaves me frustrated. Trying to think through a problem is like trying to run in knee-deep molasses. Trying to remember where I put something or organizing the chaos my house becomes. I used to be excellent at housekeeping and cleaning. A person would hardly know it now. It takes away from my self-esteem living like a supposed slob when I am not one.

The pain for me is the absolute worst part. It's completely debilitating at times and keeps me from being able to do things I used to do. The fatigue and weakness are a close second.

My irritable bowel syndrome is right up there for the very worst! Keeps me home more days than almost anything else. Fatigue and trouble finding words is also difficult. Aging doesn't make it easier.

1. Sleep disturbance leading to...
2. Fatigue....leading to
3. More Pain

After a severe pain spiral I am often exhausted for days/weeks, which leads to depression/anxiety. They are so closely intertwined for me and such a delicate balance, it is a constant balance to manage all of them to the best of my inability.

But overall, I feel like not having refreshing sleep is affecting everything. I plan on going back to another sleep study/facility to redo my sleep therapy plan. I am even considering surgery for my apnea. I am tired of being a zombie! that's a bit redundant, again deep sleep deprived, JP

Constant aching and lack of energy. I could never have a job anymore because of these two things. I need my recliner nearby at all times.

For me the worst part is when a new symptom appears and some doctors dismiss it as part of the fibro..that can be very dangerous and scary..I have both neuropathy and fibro( among other things) now I have a new problem which is strange..like a bee stings me on the upper thigh when I get up from sitting or standing ..the pain is intense but very brief..I am hearing " fibro" but it doesn't feel like it to me me..I know it is different.

The chronic fatigue and the fog are the worst for me! They really interfere with my job! Thank God I can retire next February - hopefully I won't get fired before then! Maizie55555, that sounds like sciatica rather than fibro. I have that from spinal stenosis and slipped discs at L4-L5. Occasionally have to get epidural spine shots for that and for same problem in neck at C4-C5. An orthopedic doctor can help you with that.

As far as the FM goes, the unrelenting pain . Thankfully, when it keeps me awake, the Codeine dose I am on usually works(16mg.) I can't take the Advil because of stomach issues. It used to help so I may have to get an increase in my Codeine. I am on Elavil 20 mg. which may be helping the pain somewhat. Isabelle1954

The fatigue is my worst part too. I feel like all I do is sleep but it doesn't get any better. I think my worst fear in life is to be looked at as lazy. I used to be so good at getting everything done by the end of the day. My house would be amazingly clean and I would look like a million bucks. But now my house is never clean and I am lucky if I get a shower or bath.
My aunt had fibro (she died several years ago) and I always remember my family knocking on her saying that she was lazy. It makes me so angry to remember the way I used to think about her too because I didn't understand what she went through. Now I have Fibro as well as my cousin.
I want so bad to have energy but in the last year I have had very few days where I had energy. I may have had an hour or so of so called energy but I think it was more of over caffination!!

The brain fog and fatigue! I am 42 and have young boys and I literally can't fathom getting up and playing with them (winter is worse in the summer my fatigue isnt compounded by my SAD) I get so mad when I want to do something (cook dinner) and can't get out of the chair to even think about it! Breaks my heart to see them wanting to do something and just knowing I can't

The surprise.

I'm no doctor, but I think that's a unique component of my condition. The height of my pain and depth of fatigue seem so unpredictable.
It's kinda scary to me knowing that despite being able to go on about my life today, and yesterday, and maybe tomorrow- some time again, hopefully further than sooner, I might wake up just debilitated by pain.

Having to stop working after 27 years...
Now what? Trying to reinvent myself .