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Marina27
New Member


Date Joined Mar 2015
Total Posts : 12
   Posted 3/13/2015 11:18 AM (GMT -7)   
Hi,
I have been diagnosed with Lupus, Fibromyalgia, Sarcoidosis, IBS, and Hypothyroid. I have been confined to my room and in bed for over a year. I have no energy or strength whatsoever. I keep thinking I'm going to wake up and this will all be over. I feel like I'm slipping away and I just turned 54. My lupus is under control, my pain is under control but the fatigue is overwhelming. Is this what it's like to have CFS? I would be grateful for your insight.
Marina

Dancing Dawn
Regular Member


Date Joined Feb 2015
Total Posts : 87
   Posted 3/14/2015 7:52 AM (GMT -7)   
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.

Marina27
New Member


Date Joined Mar 2015
Total Posts : 12
   Posted 3/14/2015 11:50 AM (GMT -7)   
Thanks Dawn for your reply. It was really helpful. :)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 3/14/2015 6:05 PM (GMT -7)   
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
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Marina27
New Member


Date Joined Mar 2015
Total Posts : 12
   Posted 3/17/2015 11:16 PM (GMT -7)   
Hi Jewelrylady,
Thank you for taking the time to write me. You were right about the mourning process that we go through. That's part of what I've been going through I just didn't realize it until I read your reply. I have been isolated from friends and family in the last year. I was taken off steroids after being on them for years and put on CellCept. I quickly developed a horrible infection which put me in the hospital for almost a month. I had a portacath placed and was on 3 antibiotics. When I came home I developed costochrondritis which is not only painful but scary. I have dealt with a lot of anxiety. My pain is finally under control but I am very weak and exhausted. I can't seem to get my strength back. All I can do is lay in bed and rest. I want to get out of the house and have a life but don't get me wrong I am a very grateful person because it could be much worse. I try to become a better person through these tough times. :)

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20038
   Posted 3/18/2015 2:01 AM (GMT -7)   
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.
THE HAPPY TURTLE.
SEE YA ROUND THE BEND!!
'

Marina27
New Member


Date Joined Mar 2015
Total Posts : 12
   Posted 3/18/2015 11:19 AM (GMT -7)   
Hi Happy Turtle,
Thank you for your thoughts of healing, strength, and compassion. It means a lot too me.
:)

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20038
   Posted 3/18/2015 12:28 PM (GMT -7)   
:-)
THE HAPPY TURTLE.
SEE YA ROUND THE BEND!!
'
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