For me I am on a rollercoaster with pain and symptoms. I will have better times though still with pain but then will fall back into worse. It will be from nothing I can put my finger on. It takes a mental and physical toll. I know some things one can't change can impact us such as weather,stress,anxiety so I try to work on those things to do the best I can to make them better.
For me when I add in activity it is so key to start very slow and work my way up.
Hope you have better times ahead. It sounds like you are working very hard and you should be proud of that

I too am having wild swings and cant put my finger on it. Today I am the best I have been in 6 months with hardly much pain maybe a 2 which is strange but no complaints.

last week my feet were trying to turn inside out along with jack hammer strength pins and needles and deep numbness along with severe broken bone pain. That was very stressful since it just would not let up and couldnt walk far

To make it even more confusing I stopped all meds (just on 10mg elavil and tramadol on standby) so i could get a feeling for the pain threshold so nearly no meds and feel great but it WONT last I know it!
some serious pain swings going on here

oddly enough the pain reduction comes along with substituting green tea for water last 2 weeks. is it possible? green tea? Naaah but nice to dream

Hey Zorro13,
Good to know you are having relief for now. I really enjoyed my brief weeks of it. I keep thinking that if I got there once, I can do it again.
I was prescribed green tea by my alternative dr. She feels it is very important. Only problem for me is that it makes me nauseous. So, maybe it is helping. Keep up the good work!

Artgirl..... what do you have in the art studio? You returned to it, and then had a relapse?

solvents...paints? I've been thinking about that.

Thank you for your thinking this over.
I use watercolor and do a lot of drawing and photography.

The last few days my exhaustion has been so deep that I have barely been able to drive. It's like it's incredibly difficult to even move - as if my limbs weigh tons. Sleeping quite a bit. Then, yesterday, I could feel the pattern breaking. I was able to cook dinner for the first time in about a week. There seems to be some sort of cycle in the feel okay for a few weeks then crash for a week to ten days, with considerably more pain levels. I have no idea what starts or stops it. That's why I was so excited when I first started my supplements....and so sad when the positive effects began to wane.

At any rate, everyone's symptoms seem similar yet unique. I'm still very grateful to have found this site. I have adjusted my supplements as you suggested and will see what happens next.

Thanks again for your input.

There is a virus going around that causes a horrible fatigue.

I mentioned it to a friend and she said her doctor told her about it.

I had something 2 weeks ago... lasted almost a week. I was taking naps every day, and then bingo it was over. My friend thinks I had this mystery virus! (I thought it was my old mono coming back to torture me!)

didnt last
Not calling them flares anymore. A flare would indicate to me something that gets aggravated now and then. What I have is something that falls into remission only to step up and bite harder next time. If Im honest , reality is this stuff has progressed 1000% since my tingled toes

Im back in the big time burn zone again...

Daniella - Thanks for the encouragement. It does get a little lonely being out here in chronic pain land. My hubby is supportive, but I know it gets a bit much for him sometimes.
I am interested to know that you too experience that activity thing. It's a strange phenomena. I hadn't met anyone else who did that. Good to know it's not just me!