teen with chronic fatigue

I am 18 and female. I got mono this past september during my first semester at college and recovered by late november. From my mono, I also got night sweats and nausea, but it all went away by Thanksgiving. However, in January I went through a very stressful period in my life. Ever since then, I have had chronic nausea and night sweats. I have also been getting canker sores in the back of my throat lately. Also, ever since I had mono, I have had one swollen lymph node on the right side of my neck that will just not go away. I also get a severe headache about once a week. The most debilitating symptom is my CONSTANT fatigue. I wake up in the morning feeling tired and I get at least 8 hours of sleep a night. I have started exercising and eating right, but it didn't really help. I am so stressed about my health, I fear that I have HIV or cancer. I got blood tests done in februrary and everything came back normal, including HIV. but, i still obsess over it. The weird thing is that I have never had sex, only oral- once! I can't figure out what is wrong with me and I am depressed most of the day. I am on 50mg of Zoloft but my doctor is weening me off. I have seen 4 different doctors and they all tell me it is just stress and anxiety, but I have been stressed before and I have NEVER felt like this.

[PlateletGal]

My heart goes out to you. I was also only 18 years old when I had mono and then CFS symptoms (undiagnosed) for years.

Please check your inbox. I am sending you some information that may be helpful.

[Curls]

Hi,  There's a good chance you have CFS, and not other things.  It's important to check on HIV and cancer with the doctor, but about 10% of mono cases turn into CFS according to some research studies.  Have them check for Lyme too.

There seems to be a version of CFS that gets better after 2-4 years (or sooner).  Also teens and adolecents seem to snap out of it sometimes, which adults don't seem to do.  So that's the good news.

Since it's early in your onset that's another plus at mananging this and making it go away.  

A few keys when it's early on:
- Rest as needed.  Reduce stressors (physical and emotional).  Treat this like a serious illness, and allow your body to deal with it.  That doesn't seem to do much in later years, but early on it seems to make a difference in later prognosis.

- Drink lots of fluids and stay hydrated.  As frustrating as it might be in college stay clear of alcohol for now because it can be dehydrating.  CFS often includes a reduced blood volume (hard to test for and not part of the usual blood tests).  By staying hydrated it can help you feel better.  More importantly, studies show that people hospitalized at onset do better long term than less ill patients, and it's hypothesized that it's because they receive IV fluids (stay hydrated) during that time, and also get rest, and are taken seriously.

- Don't let doctors convince you it's stress or depression, if it's physical.  What you are describing matches CFS, and the doctor's reactions are unfortunately very common.  CFS is correctly diagnosed in only around 15% of people who have it.  If any of the docs are open minded, can you take CFS info from the Cfids Association of America to them (just call the association and ask them to mail it to you, if your too out of it to use their website www.cfids.org)?  Then ask the doc to evaluate with you if this is what you have.  There are tests they can order.  None will diagnose it, but some will help identify if it's likely.

- Look for things your sensitive to such as vitamins your taking, chemicals in stuff, foods and remove or reduce them for now.  That's just to take stress off your system, and it's not unusual to develop sensitivies with this.  However, vitamins can be reallly helpful, so take any that seem neutral or okay.  Especially early on Vit C might help as an astringent against viruses.

- There are organizations for adolecents and young adults with CFS.  Dr. David Bell was one of the first to identify it in kids (there was an outbreak near his practice in Lyndonville NY).  I don't know their names, but the Cfids Association will have them.

- By the way, the zoloft might be helping.  It is sometimes used for this to increase blood volume, and serotin.  It's not a direct treatment to fix it, but for some people it helps.  For some people (me) there's an allergic or not so good response (disruption of quality of sleep), so you'll need to figure out what's right for you.

These are advice from my observation and experience.  If your doctor tells you otherwise or you see other information, or your body tells you otherwise, please listen to them....!

Good luck!

[oliviamarie12345]

i am female and 18 also, I was diagnosed with fibromyalgia/CFS a month ago and had mono as well, good luck!

[PlateletGal]

Hi Curls --- Good to see you posting again. Are you back in the U.S. now ?

It's good to see other CFS posters posting. I'm glad you guys found this community and I'm happy that you were diagnosed early enough and didn't go through years of uncertainty like I did. I wouldn't wish that on anyone. One thing that I tell everyone I know with CFS is now that you know about this devastating illness, to consider joining the CFIDS Association of America. The more members they have, the more power in Washington they have. They send me information, with the latest stats, research and treatments for CFS. In addition, they send me e-mails to get involved when it comes to political issues and CFS. And it is so easy.... they already write the letters... you just need to sign them and hit the send button. = )))

[Curls]

Hi, It's good to see you too!

I'm back.  Maybe you can post this also to the take action question I posted just a bit ago, so that gets some action - and attention - and the some action if you know what I mean.

I posted about my trip too...!

Curls

[PlateletGal]

Hey --- would you mind posting your take action post in the EBV forum ? (many of those people have CFS, but are still calling it "EBV")  I posted it there and didn't get any responses. We desperately need to get the message out... it will help all of us.

Where did you post about your trip ?

[Curls]

Sigh, I read your post above and totally misread it.  Sure I'll post it in EBV.  My trip should be just a few posts below.  It's titled that I'm "back from Israel" or something like that.  I kept it short.  I figure I'll add only if and what people are interested in.  It really was a fun, interesting trip.  I've been before, so I went well past the usual entry tourist places.  Far more to do than I had time for.  

So, how's it going?  How's the protocol?  I asked one of the doctors involved in lobbying, and she hadn't heard about it yet.  

Ops, now I see I did understand you're post and you've posted another one since them.  Can you say spacey?

[Scared98]

Thank you so much for all the great advice, i will definitely take a lot of this information to my doctor. This is the first time anyone has ever taken any of my symptoms seriously so I greatly appreciate everyone's support. I have so much hope and desire to be active once again so i look forward to conquering this syndrome!

[Curls]

Let us know how it goes, good luck!  I'm sure you'll have more questions...

I forgot something important, exercise.  There's something with CFS called post-exertional malaise.  After exercising, a patient will feel increase of immune system, or fatigue, or muscular fatigue that will start hours or even days afterward.  The exercise will often feel good.  So it's best to do careful graduated exercise.  Pay close attention to how your reacting and keep the levels under that.  It can wind up being a small amount for some people, more for others.  Exercise adds so much value, but not triggering from it helps form an upward instead of downward spiral.  

Also, I remembered in college i got mono with it hitting the liver instead of my neck glands, so it took a few months to figure out.  I didn't get CFS afterward.  However, I dropped out that semester and spent the summer in bed (plus some gradual walking).  Even in the fall it was still dragging me.  So even if you don't have CFS, mono can take a lot longer to get past than doctors or anyone tends to indicate.  Of course the same things I mentioned above of taking good care of yourself are going to apply!

Hope you start feeling better soon!