Anyone with Chronic Fatigue Syndrome

[danadane]

I went to the doctor b/c i have been extremely tired, fatigue, achy, and feel like i got the flu but i don't. Some days are good some days bad. Well my doctor ran bloodwork and mine came back positive for mono and epstein-barr test was 170 which is extremly high. So he told me i have Chronic Fatigue Syndrome and wanted me to try Provigil. Anyone have this? I'm kinda lost on this one. All I know is i tired, achy and don't perk up until the mid-afternoon. When i wake up i feel as though i havn't slept at all. Anyone with Chronic Fatigue Syndrome have these symptoms. All i can think is oh no not something else. :hmm:

[SandyRN]

I have it along with several other illnesses. I have never taken provigil or any other meds for the chronic fatigue but do take thyroid medicine which has helped a lot. My thyroid levels were extremely low and we had to try different doses of different thyroid meds before I began feeling better. I still am very tired most days and feel like I've had no sleep when I get out of bed in the morning. I may need my dose changed again. I've read on some chronic fatigue/fibromyalgia boards that doctors have tried thyroid meds on people who's levels are normal and they've found that just a small amount of medicine can make a remarkable difference.

If you have any questions please let me know.

Sandy

[creatingkarma]

I have tried Provigil. It would compare it to ephidrine or drinking a pot of coffee. It does perk you up! I hope that it helps you.

[Katrina]

I am planning on having my doctor look into it with me since I am convinced that fatigue is my most disabling symptom right now....so even if he doesn't think it Chronic Fatigue syndrome I know I know I need some help! My question...what can I do (that is IC friendly and I don't already know about lol) to get me some energy???

:grouphug: Danadane, so sorry about all of your illnesses....I am very multi diseased (I think there are 17 things on my list?) It sucks....but things do improve. :kiss:

[songbird7]

Sometimes I wonder if IC is related somehow to chronic fatigue. I don't have all the symptoms of chronic fatigue but IC exhausts me a lot of the time.
What do you think?
((((( ))))))))

[Katrina]

IC is often exhausting....and IC, CFS, Fibro, and some others are often together....

[danadane]

to everyone who replied to my question, thank you!! I'm sorry that it took me a while to respond back. It is encouraging to know that people can relate to me. Sometimes I feel like a hypochondriac (may be misspelled). My husband has a hard time dealing with everything that IC brings to the table but i have to admit, he tries to be supportive and he loves me and he never thinks my pain or fatigue is in my head. I do know he wishes i was more up to go and do things but when i do want to go he's right there ready. Believe it or not he actually helps me with my self-catherization b/c i have a hard time doing it myself. The first time was very funny, i couldn't even describe it. (put it this way when he realized were the catheter went and how big the catheter was he was shocked) everytime i think of all the times he has helped me cath myself and do my treatments, i realize how lucky i am. I sometimes forget how wonderful he is. ( can u believe that) To ease the tension of it we find humor. As far as some of my other family members they see me as someone who never feels good, except my grandmother who is a gift from God. Thank You!!!! To everyone!!! :)

my saying: Even in the most serious situations we sometimes have to find humor because if i didn't find humor to laugh, i would cry, and i don't want to spend my life in tears. :kissing:

[PlainJane]

I still am very tired most days and feel like I've had no sleep when I get out of bed in the morning.

Sandy

Totally know this feeling! I've had it for almost 2 years now. My sleep is so unrefreshing. I wake up almost as tired as when I went to bed.

I found out my cortisol is very low which can cause fatigue. As well, my thyroid is borderline low. I also have other problems like vit. C deficiency, low potassium and low iron which can all cause fatigue as well!

I found out all this by visiting a chronic fatigue doctor. I haven't actually been diagnosed with chronic fatigue syndrome. I don't have most of the symptoms except the fatigue. I would totally recommend a chronic fatigue doc.

Erica

[PlainJane]

DanaDane,

How are you doing these days?

[Katrina]

doc is currently testing me 4 B12 deffiency....we shall see what the future holds.

[SandyRN]

doc is currently testing me 4 B12 deffiency....we shall see what the future holds.


I need to remember to ask for this and for a cortisol test..IF I CAN REMEMBER TO MAKE A DOCTORS APPOINTMENT for a time that I'm not running my daughter all over town ---or if I could Just REMBEMBER.......arrrrrrgh....

Let us know what you find out Katrina.

[Katrina]

doc said I should know by thursday....I shall let you know. :grouphug:

[Eccles]

Hi Danadane, I've been housebound with severe CFS for 19 years & believe my fibromyalgia & IC to be part of the same illness.