Expert: Suzan Jackson - 9/20/2008

Question
Hi,

I have been diagnosed with CFS/ME since May this year, but have been unwell since Feb 2007. I am 16 years old and am at Sixth Form. Over the summer with no school I didn't feel as bad (not great either, worse than what I was expecting to feel over summer to be honest). But now I am back at school again, I obviously feel a lot worse physically but also mentally. I am also seriously wondering about quitting sixth form as the mental strain aswell as phsyical is strating to get me down.

The main reason I'm writing this to try and talk to someone about the "mental" side of CFS/ME. I have real trouble having conversations with people and frequently use the wrong words in sentences, mix up and say words in the wrong order or just cant even say what I am wanting to say - I take it this is quite normal for CFS/ME. I feel like I am making a fool of myself at school and, well I dunno, wondered if there is a way to lessen it at all.

I also have constant feelings of being watched, stared at or spied on which is starting to freak me out and also am hearing voices and noises quite constantly that no-one can hear ... I didn't think this was a part of CFS/ME, and if it is it wasn't something I was told about by my doctor. I also like to keep my curtains shut so people can't see in, not that they could see well if my curtains were open anyway.

I also feel like I want to isolate myself all the time ... just dont want to be with or be around people and would much rather it be just me by myself and that is it. I have odd and strange trains of thought with ideas not linking well and even if i want to think of something ... sometimes it just wont happen no matter how hard I try.

The final thing is I can feel awful all day but when i go to bed at night I dont want to sleep, just feel too active.

If theres anything you can think of to help me of if you think CFS/ME is a wrong diagnosis I would be grateful.

Thanks,
Matt

Answer
Dear Matt -

I am so sorry to hear that you're going through such a difficult time. I have had CFS for 6 years, and my sons - who are 14 and 10 - both have it, too.  So, I can definitely relate to what you're going through.  You've asked lots of questions in your note, and I'll try my best to answer those that I can and to provide some resources for more information.

First, and perhaps most important, is that some of your symptoms - hearing noises and voices and feelings of paranoia - are most definitely not due to CFS/ME and require immediate medical attention.  These are very serious and potentially dangerous symptoms that might be caused by another illness.  You should talk to your parents and to your doctor and describe those symptoms as you have in your note to me.  

Now, as to CFS/ME, I can't really assess whether it's the right diagnosis for you without knowing the rest of your symptoms.  CFS/ME is usually defined by an exercise intolerance (exertion makes you sicker), often a recurring sore throat, the cognitive problems that you've described, and often headaches or other types of pain.  CFS is often very up and down - sometimes you feel better and sometimes you feel worse (especially after exertion).  If you're unsure whether your diagnosis is correct, you can start by trying this quiz:

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

Here's more information on CFS, including its diagnosis and treatment:

http://www.cfids.org/about-cfids/default.asp

One other possibility comes to my mind that causes severe cognitive problems (the "mental" symptoms you described, like having trouble talking to people, forgetting or getting words mixed up, having trouble remembering and thinking clearly).  CFS can definitely cause this, but so can Lyme disease.  Lyme disease is an illness caused by a tick bite, but many people who get Lyme don't even realize they were bit by a tick.  Lyme disease and CFS cause very similar symptoms and are often difficult to tell apart.  There are blood tests for Lyme, but they aren't completely accurate - sometimes people with Lyme still test negative for it.  I recently got Lyme (on top of CFS), and I've written a blog about how to tell it apart from CFS:

http://livewithcfs.blogspot.com/2008/09/lyme-disease-cfs.html

If you have any joint pain or swelling, you should definitely talk to your doctor to look into Lyme disease.

Assuming you DO have CFS/ME, it can really help to talk to other people going through the same things as you.  There are two great places online where you can find resources especially for teens with CFS:

http://www.cfids.org/youth.asp

http://www.cfids.org/youth/ylinks.asp

www.pediatricnetwork.net

http://www.pediatricnetwork.org/youthvoices/index.htm

Both of these websites include links to groups and lists where you can interact with other teens with CFS.  I know from experience that it can help tremendously to talk to other people with CFS.  This is a very isolating illness that even those close to us have trouble understanding.  It's important to make connections with others experiencing the same things.

As for your difficulties with school, they are completely understandable.  Few teens with CFS are able to handle full-time school like other students, but that doesn't mean you have to quit.  There are many ways that your school can work with you to accommodate your needs.  Here in the U.S., we have laws that require schools to work with students who are ill or handicapped to ensure they receive whatever services they need in order to continue school.  My 14-yr old son was much sicker a few years ago, and we worked with his school to put together a plan for him.  In his case, we ended up with the school waiving all attendance requirements, waiving all non-required courses, and providing a home tutor for two of his classes.  Then, he was able to attend his other three classes at school about 70% of the time, and those three teachers helped him to make up work when he was absent.

Another example is a 15-year old girl with CFS that I know who lives in Arkansas.  Her parents also met with her school and agreed on a plan.  In her case, she is taking only two courses each semester, and her teachers know that she will be absent some of the time and they are required to help her keep up.

The websites I listed above include some very good articles about working with schools, although some of this information might be specific to the U.S.  The best approach is for your doctor to write a note explaining your diagnosis and for your parents to meet with the school administrators to come up with a plan that will work for you.  Lots of kids and teens go to school part-time, take fewer courses, or have a home tutor teaching them.  There are many options.  Here is another blog entry I wrote about working with schools:

http://livewithcfs.blogspot.com/2008/02/cfids-and-school-resources.html

Finally, I want to give you some hope.  If you do have CFS/ME, there are treatments that can help.  You didn't mention what treatments your doctor suggested when he diagnosed you, but most kids and teens respond very well to treatment for Orthostatic Intolerance (OI).  This is a condition of low blood pressure that affects people with CFS.  here is an excellent article on it:

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

Treating OI with Florinef (as described in the article) is what helped my older son improve so much that he was able to return to school full-time, re-join band, and even play soccer.

Another treatment to consider is anti-virals. Researchers now know that many cases of CFS involve viruses.  Severe cognitive problems - like what you've described - are very often caused by underlying infection(s), like Lyme disease or any number of viruses.  When people with CFS are treated with anti-viral medications, the very first improvement they notice is often improvement in thinking and mental clarity.

Here's another blog entry with some information:

http://livewithcfs.blogspot.com/2007/07/cfs-and-valcyte.html

One treatment that is popular in the UK but can actually be very harmful to people with CFS/ME is graded exercise therapy.  Research shows that exercise makes CFS worse, so stay away from this so-called treatment.

I hope I've been able to help you and provide some information on where to look for more help.  Please start by seeing your doctor and explaining what you've told me, especially about the unusual symptoms you're experiencing.  Also, share this note with your parents or another adult you can trust.  You need the support of someone who cares about you to help you get through this.

And please feel free to e-mail me directly at jacksonde@comcast.net if you have other questions or just to let me know how you are doing.  You are not alone - there are lots of us who have been through what you're experiencing.  Things will get better, with your doctor's help.

Good luck -

Sue Jackson

www.livewithcfs.blogspot.com