I need encouragement

Hello Marina27, Thank you for your post. I'm sorry to hear you feel
like you're slipping away and that your energy isn't available the way
you'd like it to be. I was diagnosed with CFS about 15 years ago.
Everyone's case is different and everyone's symptoms are different.
CFS is sort of 'an 'umbrella term' to describe many of the things which
we all have. They don't yet know what causes it.
There were times
when I had to be in bed with fatigue. I also had pneumonia several
times which would disable me for several months at a time. Now, my
energy varies and I am up and about. Some days I have to just
'crash' or rest. When I got my thyroid and adrenals treated, that
helped. So. I for sure can't diagnose you, but it could very well
be the chronic fatigue that's causing your tiredness and withdrawal
feelings. Have you asked your doctor about this?
Your doctor sounds good that he/she has treated your
lupus and pain. Does your doctor have experience with chronic
fatigue? If not, maybe you can find one who has that background.
Take care, and keep on posting.

Marina, hi, it is nice to meet you, I wish it was under better circumstances. CFS is a mysterious & complicated disease. Recently the Institute of Medicine renamed it Systemic Exertion Intolerance Disease (SEID) because it is more then chronic fatigue. Our main symptoms post exertional malaise, pain, inflammation, fatigue, brain fog & much more. With all you have I really hope you don't have CFS/ME. This disease is dx'd by excluding everything else that could cause these symptoms, they are working on finding a better way to diagnose but we have to wait.

My daughter has lupus, it is one of her illnesses, it causes her much fatigue. Also, I know Hypothyroid & FM can cause a lot of fatigue. If you have these under control & still feel there is something left undiagnosed then go back to your doctor & talk about CFS/ME. I just knew there was something more & went back to my Rheumatologist & was then dx'd with CFS/ME. I spend lots of time in bed but I am now able to be up more often & I pace myself with what little energy I have. Your life isn't over, just different. You may be in the mourning process, we have to grieve our old lives & what we have left behind & start a new kind of life. Has anyone dx'd you with depression? Do you feel depressed? This is also a causes a lot of fatigue.

Take care of yourself, I hope you are able to get out of bed soon. I spend my days resting on the couch but I do like to spend the time with my family & I love my coffee, lol. Keep us posted on how you are doing, many gentle hugs, Denise

i send you many healing thoughts of compassion and strength. your post touched me. i have my fair cop of medical but i am able bodied, use a walking stick, but that is cool. know that i care.

my healing thoughts to you all. keep strong.