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New Member

Date Joined Mar 2006
Total Posts : 1
   Posted 3/20/2006 12:05 AM (GMT -6)   
Well,let me tellyou what has happened and see if this sounds familiar to anyone. Last May I woke up one day and I was so tired I couldn't get out of bed. I mean COULDN'T. I went to my dr and he automatically said depression. I had never felt this type of fatigue before and I disagreed with the dx and made them run a ton of tests. My bloodwork all came back normal-this includes thyroid,epstein barr and ANA. CBC was normal.sed rate was normal-CT scans were normal.MRI's were normal. I was put on Cymbalta 8 months ago along with Nexium-I have stomach issues as well. The nexium has taken care of the stomach problems ,but the fatigue remains. I get B12 shots every other week. They help a little but not much. My dr wanted to refer me to a rheumatologist,but I'm tired of dr's and all the bills. Also the rheumatologist is 4 hours away. Anyhow, I'm hoping for some feedback-I've been panicked that I'm dying-possibly because my son died of a brain tumor 3 years ago and partly because i feel terrible most of the time. People around me just don't get it. I just don't know what to do now. Any suggestions?

obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 3/20/2006 6:10 AM (GMT -6)   
Hia nightelf, The best thing you can do that I know of, is to find a CFS support group in your area by doing a Search on Google or some Search engine that you use.

Once you contact someone from there, you can ask if there are any CFS Dr.s in your area and let them work with you to determine what is wrong with you.

A good CFS Dr. is one of the best most of the time, because they know what other illnesses can mimick CFS.

They usually very thorough also. You can contact someone at and ask for a Support Group connection in your area.

Whenever we get this fatigue, until we're diagnosed, it is easy to imagine all sorts of things.
I also thought I must have had brain cancer because of the pressure in my head and cognitive impairment it caused.

That website will give you the symptom list that you can check against what you're feeling.

Fatigue is just the main one. Others symptoms would go with it.

Wishing you all the best.

LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 

obs ann
Veteran Member

Date Joined Jan 2006
Total Posts : 679
   Posted 3/20/2006 6:14 AM (GMT -6)   
Another source for finding Support Groups is

LateNeuroLyme + CFIDS = Lord knows what.
Romans 8:28 ~ And we know that ALL things work together for the Good,   Y
for them that Love God, for them who are the called according to His purpose. 

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 3/20/2006 6:13 PM (GMT -6)   
Welcome Nightelf,we are glade to have you here,sorry that you are suffereing from CFS thoe.You are not alone there are alot of people that has this as well and as you can see you will get alot of support and alot of info.I do hope that you continue to come here and be a part of our forum.

New Member

Date Joined Mar 2006
Total Posts : 4
   Posted 3/24/2006 3:31 PM (GMT -6)   
I think you have summed up how most of us felt when we first *went down* with this disease :(  Totally scared and wondering if we were dying !
Even today there are times I feel that it MUST be something *more* serious ! but no, it;s Chronic Fatigue and it makes you feel exhausted and in pain, with no mental capacity :( Hope it helps to know that there are others that understand .

Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 4/22/2006 3:35 PM (GMT -6)   
Hi I'm new here but what you have said is SO familiar. I have vit B12 injection once a month. Doesnt do anything for me. But I get this because they cut the bit out of me guts that absorbs this vit. Trust biology to only aborb Vit B12 in the bit they cut out of me!
We have NO Chronic Fatigue specialist here in Ireland just voluntary groups but I am due to see a rheumatologist/neurologist and a immunologist but I aint optimistic.
Most people here in Ireland, if desperate enough go across to England or even Germany.
I hope to get my life back. I certainly hope so and I hope so for everyone with this illness.
about the only one here apart from the voluntary groups who believes I'm this sick with this is my GP who is just wonderful.
Bye, keeep on truckin

Regular Member

Date Joined Nov 2005
Total Posts : 90
   Posted 4/24/2006 1:16 PM (GMT -6)   
Boy do I know what that's like!! Don't worry, you're not alone. It took me 10-11 YEARS to finally get a diagnosis... and it was quite frustrating to put it mildly.

The overwhelming fatigue, headaches, not being able to remember the smallest things,... pain... etc... etc... I thought I had something wrong in my brain too. I'd get so frustrated because I couldn't remember things, was so tired all the time, and was surrounded by people who just thought I was being lazy constantly telling me all the time that I'm lazy, unmotivated, etc... you name it it's been said. And that was the most frustrating. Because it wasn't that I wasn't motivated, it was simply because I didn't have the energy... and that made me feel even worse!

But don't fret or get yourself down about it... there is hope!! Even though they don't know what causes it, or how to treat it or cure it, there's still Doctors that are willing to help, even though they may be hard to find.

I've been on Provigil since February, and it's helped me TONS! I find it a little easier to focus, I have energy to get through the day (although it's not a miracle cure, but I almost feel "normal"). Saturday and Sunday I forgot to take my meds... omg it was horrible. I couldn't see right, couldn't visually or mentally focus on anything, was so exhausted it wasn't funny, I just felt HORRIBLE!!! It was rather late in the day Sunday, so I only took 1/2 of my Provigil, it helped clear me up some, and remembered to take it this morning, and I'm back to my old self I feel.

I recently got back to work (March 27th) as a 911 Dispatcher, and was worried when we started training that I wouldn't be able to retain all the information that we have to learn. I studied and studied and studied, and for the life of me I've been having a heck of a time remembering all the 54 "Ten Codes" and 18 "Lookup codes" we have to learn. (ya know like 10-4 means ok?)... I got a 93% on my switchboard test, and it was a slow night, so I wrote a story using all of the 10-codes and lookup codes, and it helped a lot!!!

I know there's people on here who's fatigue is worse than mine, but the most important things to remember are these:

1. (my personal motto) "No matter how many clouds are in the sky, the sun is still shining. Remember that, just because you can't see it, doesn't mean it's not there".

2. The Chinese Yin and Yang theory. There is bad in every good, but there IS good in EVERY bad. If I can find something positive out of being raped at knifepoint, you can find something positive out of 99.99% of things in life period. (The positive? I'm still living and breathing, and give thanks for every day I do wake up)

3. You CAN do it! Think positively. It's really REALLY hard to do sometimes, and believe me even recently I've gotten so frustrated with things at times I've wanted to just (no pun intended) lie down and give up. There IS a light at the end of every tunnel. Just remember not to push yourself TOO hard,... take baby steps if needed. Some progress is better then none at all!! We all want to be better NOW... but we must have patience too. If you push too hard you might fall backwards. Know your limits, and live by them.

4. Don't pity yourself, or ask "why me"... it gets nothing accomplished. Everything happens for a reason, even though it may not be clear. Maybe our purpose is to give hope to others, maybe someone is trying to tell us to slow down, who knows? There's ALWAYS someone out there that has it far worse than we do, and they're still tickin. Granted we do have a lot more obstacles to overcome than others, but it can be done!!!

5. "Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of all the doctors I shot when they told me 'Your're perfectly healthy, it's all in your head'"

6. "To dream of the person you would like to be is to waste the person you are"

about Provigil (because it'll probably get asked) ;)

It's a drug made by the company Cephalon, which it's intended use is to treat people with excessive fatigue from Narcolepsy, Sleep Apnea and SWSD (Shift WOrk Sleep Disorder)... but has been used fairly widely for people with CFS/CFIDS. There is no other drug in it's class, and there are no generics available. It's pricey, but if your insurance will cover it it helps a lot of people. Granted, like any drug it's not for everyone. There's also a program offered through NORD by Provigil or for Provigil, in which where if you meet certain income or insurance criteria, they may provide the drug to you at no cost or reduced cost. This is through the US only to my knowledge, and Provigil is marketed under a different name in other countries... but I'm not sure of the exact names.

Welp that's it for my inspirational post of the day, hope that helps and remember...

SMILE!!! It excercises your cheek muscles!!!


I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)


CFS: Provigil 200mg, once a day
Anxiety: Lorazepam .5 or 1mg 3xs a day or as needed

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