Just told I had CFIDS...is this a real condition?

[starlet32079]

Hello everyone,
I am a 26 year old female and when I was 17 I had a very long bought with mono. I was sick for 6 months. After that I felt so much better. Then when I was 20 I felt very ill with mono like symptoms (you can only get mono once) well anyway it turned out that I was pregnant. My fatigue got so bad that I ended up having to quit my job. I went to the doctor and they told me I was so tired because I was pregnant. Well after I had my 1st daughter the fatigue didn't go away. Then the doctors told me I was just depressed and sleep deprived from my baby. I knew that was not the problem, it was a different kind of tired. My brain seems to be foggy and I hurt, my stomach is awful, my hips hurt, I have heart palpitations, I have tremors in my neck that won't go away, my thighs feel like they are on fire, I have lost 12 lbs in the past 3 months but I eat normal, I feel 2 times last week, well you get the picture.
Anyway, in march of 2004 I had my 2nd daughter, and all the way through that pregnancy I felt great, hardly any fatigue, and even afterward I felt great. Now all of these things are back again.
Is CFIDS a real thing? Or are doctors to lazy to find out what is really wrong? My mother had Multiple Sclerosis and it has alot of the same symptoms that I am having...why shouldn't they test for that...then at least there is some thing they can do to help. I myself am a little sceptical of this , my husband thinks it is a crock. I don't know what to think.
I can't even enjoy going out and doing things with my family. What are my daughters going to think of me? I love my girls more than anything, but I feel like such a awful mom because I have no energy.
I guess I am just looking for some suggestions or words of wisdom.
anything would be great.
Thanks

[kyethra]

Unfortunatley CFIDS is real. It is a conidition that isn't very well understood though. I imagine they haven't tested for MS because you are young. I would recommend you find a good CFIDS doc in your area to help you with a treatment plan and do some research on different things and see if you can get better. If you haven't been tested for other things, then I would find another doctor.

CFIDS is this strange mystery illness that confuses medical professionals. Other tests you may want to consider could include a sleep study and allergy tests and a full blood panel.

Some people think CFIDS is really caused by stress or psychological problems. I wish that was the case. I tried to pursue that angle and talk to people about it- but everyone told me that it was definately not in my head.

Most cases of CFIDS are triggered by a virus.

[peregrine]

The only reason I might question you having CFIDS is because of your weight loss. Usually you don't have this with CFIDS. I would also do research on other related illness as well, i.e. Lupus, MS, Lyme's, and if you see any similarities in your symptoms insist that your doc followup. You might need to see a Rheumatologist or another specialist who could order the proper tests. If it is something other than CFIDS, those conditions are ususally more identifiable.

[thomas3000]

What's your diet like and list your symptoms please.....What heritage? I urge you to not go the conventional route, the only thing that they can promise is to prolong your suffering...They're good at that...

[Kathy90277]

Originally Posted by thomas3000

What's your diet like and list your symptoms please.....What heritage? I urge you to not go the conventional route, the only thing that they can promise is to prolong your suffering...They're good at that...

Not all doctors are. I go to an infectious disease doctor whose son has the same thing I do. In fact it is well known(in medical circles) that his son suffers from same type of illness. It is believed to possibly be a genetic component as well as viral.

There is no cure yet. Thankfully my doctor does not give me false hope. He can make me comfortable by making sure I get my sleep which was a huge problem. I was waking up two-three times a night and often had night sweats.

I knew it was not a case of menopause as I had a full blown hysterectomy in 93. Why would a credible doctor prolong your suffering? That makes no sense. The fact is, THERE IS NO CURE FOR CFIDS as of yet. There are experimental drugs they are using but most people go into remission for a few months and then, relapse. That is the simple truth.

I know many who have gone the supplement and diet route and it did nothing. I'm currently watching my diet as I was just diagnosed with Type II Diabetes but I was told I have CFIDS and I know there is no cure.

Remember, there is still no cure for Muscular Dystrophy - again much of that is caused by a genetic component. I believe CFIDS is the same thing as does my dr along with a virus.

A good dr will tell you to change your lifestyle and take it easy. Cut out the stress in your life and conserve your energy. Baby steps...Also, very important to get a good nights sleep and this is why they put you on medication to help with that.

For me, I have nerve damage and take pain medication. The nerve damage is believed to be caused by the virus that is attacking my nerves.

Doctors are not God but if you work with one that is caring and understanding and has a son with the same thing...well, what can I say?

Kim Snyder did not lie....Michelle Akers did not lie......Blake Edwards did not lie......The gal who wrote Sea Biscuit did not lie..... you have all these people speaking out on CFIDS and they had lots of money to try different things and yet nothing worked.

CFIDS is a real illness and is recognized by the CDC.