Hi everyone,
I don't know if this is the right section for me because I don't know what on earth is happening to my health,I only know it's terrible and it's ruining my life.

I've had CFS for almost ten years but this last 18 months I've gone down hill badly and I can't crawl out.

This year despite getting the flu vaccine as I had done the two previous years,I caught 6-7 flus.
The problem now is the symptoms will not go away.
I have this pattern of seemingly coming down with the flu and feel terribly ill and exhausted for three to four days,I have to stay in bed and sleep sometimes all day.
Then I start to feel a little better but far from well and go out and do some minor shopping,and a little part time work.
This only lasts a few days and off I go again.It all starts over.
It's truly scary and has never happened to me before.

My symptoms are the same each time just different in severity and duration.
It starts with me feeling dizzy,spaced out,anxious,even panic like.My heart will usually beat more rapidly and or I'll have palpitations.I just feel weird and not right.
Sometimes I feel extremely nauseas or mildly so.Then the sore throat appears and I know I'm in for another bout.
A few hours later I have a headache,stiff sore neck,sore ears,swollen glands,
I'm weak,walking is too much,aching all over,my vision is more blurred and I'm so very exhausted.
Sometimes I feel a bit warm but have no fever.Often I feel
cold when it's hot.
I get sharp stinging pains in my feet and hands,sometimes in my wrists and elbows.

Even though I've had CFS for a long time,flu like symptoms have not been part of my condition.

What is happening to me has made me feel very depressed.
I cannot plan anything.The limited life I had has gone.

I have been to a few doctors.They have no answers,not that any of them were specialists or particularly clever doctors.
Routine blood tests shows all is normal............how can this be?
My ferritin levels were low,this is not unusual for me due to heavy bleeding.I've been taking my iron tablets almost daily with vit C but still I am terribbly ill.

I know there is something very wrong with my immune system.
My body cannot rid itself of one of the flu strains that I caught.I've been battling this now for at least six months.

Any ideas?

I'm desperate,cheers Lilli

Hi everyone,
I don't know if this is the right section for me because I don't know what on earth is happening to my health,I only know it's terrible and it's ruining my life.

I've had CFS for almost ten years but this last 18 months I've gone down hill badly and I can't crawl out.

This year despite getting the flu vaccine as I had done the two previous years,I caught 6-7 flus.
The problem now is the symptoms will not go away.
I have this pattern of seemingly coming down with the flu and feel terribly ill and exhausted for three to four days,I have to stay in bed and sleep sometimes all day.
Then I start to feel a little better but far from well and go out and do some minor shopping,and a little part time work.
This only lasts a few days and off I go again.It all starts over.
It's truly scary and has never happened to me before.

My symptoms are the same each time just different in severity and duration.
It starts with me feeling dizzy,spaced out,anxious,even panic like.My heart will usually beat more rapidly and or I'll have palpitations.I just feel weird and not right.
Sometimes I feel extremely nauseas or mildly so.Then the sore throat appears and I know I'm in for another bout.
A few hours later I have a headache,stiff sore neck,sore ears,swollen glands,
I'm weak,walking is too much,aching all over,my vision is more blurred and I'm so very exhausted.
Sometimes I feel a bit warm but have no fever.Often I feel
cold when it's hot.
I get sharp stinging pains in my feet and hands,sometimes in my wrists and elbows.

Even though I've had CFS for a long time,flu like symptoms have not been part of my condition.

What is happening to me has made me feel very depressed.
I cannot plan anything.The limited life I had has gone.

I have been to a few doctors.They have no answers,not that any of them were specialists or particularly clever doctors.
Routine blood tests shows all is normal............how can this be?
My ferritin levels were low,this is not unusual for me due to heavy bleeding.I've been taking my iron tablets almost daily with vit C but still I am terribbly ill.

I know there is something very wrong with my immune system.
My body cannot rid itself of one of the flu strains that I caught.I've been battling this now for at least six months.

Any ideas?

I'm desperate,cheers Lilli

Lilli,

Are you certain these are "flu" symptoms? It sounds to me like an exacerbation of CFIDS which, as you know, can feel very much like you have a severe, on-going flu, but without the fever and cold. I would try treating it as such and just rest, only rest, until you are over this "flare". I find B12 helpful as well.

All the best!

Peregrine

Hi Lili,

Wow! I have most of the symptoms you listed! I'm 51 years old, and was diagnosed with Lupus, CFS and Fibro 2 years ago.

I also feel JUST like I have the flu, only 10 times worse! This comes and goes when it wants ... and there's nothing I can do except take Tylenol and Motrin every 5-6 hours.

I too have allot of trouble with my heart .. palpitations, extra beats and rapid heartbeat ... it's VERY discouraging! I've been depressed off and on for a year because of all of this. Of course I also have serious troubles in my marriage and scheduled to separate in February ... so that doesn't help!

I don't think it's an actual FLU ... I think it's continuous flairs from the CFS, of course I could be wrong .. but that's what I get all the time.

It's sad and very hard on us emotionally AND physically to feel like this all the time .... so I empathize with you ... and I know how you feel!

Do you take anything for the aches and flu symptoms? Have you tried Motrin/Tylenol combo? Together they do really good .. at least for up to 6 hours.

Stay in touch .... you have a friend who understands. :)

Hugs,
Dee

Thanks to Peregrine and Dee,

I don't think I'm actually catching new strains of flu at this stage but I did have several different influenza viruses this past year.
This is what started the whole flu symptom pattern off.
As I said these symptoms were not part of my CFS,although I know many people do suffer with sore throats,headaches,swollen glands etc.

I've had CFS a long time and felt familiar with my symptoms even though at times I would pick up a virus of some sorts,it would usually run it's course and then I'd be back to my sub standard health.
My life was very limited but I did have a bit of one.Not now!

I cannot go on a short holiday where as before I could.I cannot plan to go out to dinner,to a movie or to work part time where as before mostly I could.
I cannot do my cooking, grocery shopping or house cleaning where as before I could sometimes manage and if I waited a while I would bounce back enough to be able to it in a bits and pieces.

Something in my immune system has changed.
It's like my body is harbouring a virus or it is over reacting,pumping out cytokines trying to eradicate a virus that is not really there?
I don't know how it works.I'm just certain that my body is getting the messages mixed up,like trying to kill an ant with a sledge hammer and it's making me very very sick.

I'm not able to take codeine and nothing else I've taken has helped .I even got desperate and tried a small dose of cortisone,it didn't work.

I wanted to have injections of gammaglobulin but unfortunately it's become very expensive and no longer available here in Australia to treat CFS.

I'm looking to find a doctor to assist me in taking an immune modulator.So far no luck as these drugs are not here so I need to import them,which isn't too difficult but is impossible without a doctor's help.

I must admit,I have never been so low and so ill and have
been wondering if it's all worth it.Quality of life is everything and I've lost the little bit I used to have.

Good luck to you both,I'll keep searching.
Dee I will ask a doctor to consider Lupus.I've checked out the symptoms and I'm not sure if I fit the picture.
What blood test could I have?my ESR test was normal.

Cheers and thanks so much,Lilli :)

Knowing what I now know about myself, this is the action I would take. I would ask the docs to run very specific blood tess checking thyroid, RA factor, and antibodies of all other autoimmune diseases one can think of. In my case all of my tests have been normal all my life, but because other tests were run, it was eventually discovered I had antibodies to hepatitis C which would have been from a blood transfusion in 1967. Even though I do have some minor liver damage, all my liver function tests remain completely normal. One thing that made a very big difference when I was having the really bad flu tye symptoms several years ago, taking vitamin A made a big difference. Largeer doses of Vitamin A is usually very safe if taken on a short term basis. The easiest way for me to monitor my intake was to see if my night blindness improved and ability to adjust easily to bright lights or any drastic change in light such as walking into a dark room from a bright room.

Alice

:confused: I can relate and i am sitting here in a HIGH state of anxiety rt now..I first felt ill about 4 yrs ago but for 18 mths now its VERY BAD. I can not do ANY of the things i used to do.....cleaning house , getting dressed , its all a major effort. my dr has searched a good deal....heres the tests i have had.
Brain Mri and CT scan
Neuro exam
Throat scope
Several chest Xrays
Lung testing
Ekg-s
Pancreas, Gallbladder , kidney & liver ultrasound
Abdominal x Ray
Epstein Barr Virus Test
B12 screening
Sed rate
Lymes test
Lupus & Autoimmune tests
Lots of CBC & differentials
Urine tests
Thyroid and adrenal Gland tests
Metabolic profiles
And more.........???????? I am confused too. He says theres not more he can do at this point and believes its anxiety, depression and is open to cfs. ANY ADVICE WELCOME !! Thanks in Advance, Brigid