Chronic Fatigue Syndrome/CFS? or something else?

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Question
Hello Suzan,
I am a 16 year old girl and recently I have been having a mix of symptoms that seem to link with CFS.
These include:
Headaches- everyday
memory loss
tiredness- even when I've slept for many hours
pain in the tummy and muscles- a couple of times a day
I can't tolerate dairy products anymore
and depression- which has cause me to self harm 1-2 times a week.
and I have a sore throat quite frequently
and I'm not sure but is hair falling out one.

These have occurred for the past 2 years they're been a big trouble as I have my exams coming up yet I cant concentrate. The symptoms have confused me very much as they never seemed to connect most of the time, then my friend told me about this and they all just came together, so is there a chance its CFS or is it some other type of thing?

kind regards

Mollie x

Answer
HI, Mollie -

I'm sorry to hear you have been suffering so much for so long.  Have you seen doctors?  With such a large number of serious symptoms, you definitely need urgent medical care, but I do understand how difficult it can be to find a doctor who recognizes CFS and understands how to treat it, especially in the UK.

Reading through your list of symptoms, I was thinking to myself that you could have any number of conditions which cause similar symptoms...until I came to the recurring sore throat.  That, along with all the other stuff, does probably mean you have CFS.  Two other central parts of CFS are unrefreshing sleep (no matter how long you sleep, your sleep feels light and you wake still feeling exhausted) and an intolerance to exertion, where even the smallest bit of physical or mental exertion results in a sudden increase in symptoms within 2-24 hours and lasting days or even weeks.  For instance, do your sore throats occur after exertion or stress?  For most people with CFS, we might be able to, for example, take a walk on a day when we are feeling better, but then within hours (or at least by the next day), we suddenly feel as if we have the flu.  The pattern is sometimes difficult to see at first, if you don't know what to look for.  Have you noticed that?  Overall, everything on your list could be a part of CFS.

In the UK, CFS is also called ME, Myalgic Enchephalomyletisis.  Most UK doctors do recognize ME, though it is difficult to find effective, modern treatments in the UK.  But step 1 is getting an accurate diagnosis.  Even if you fit the symptoms of CFS, a doctor needs to test you for all sorts of other conditions that can cause similar symptoms to rule them out (since there is no test for ME/CFS).

Here is an excellent article on diagnosing ME/CFS, with a list of conditions to exclude:

http://www.cfids.org/about-cfids/default.asp
(see the Symptoms and Diagnosis sections here)

If you do have ME/CFS, there are lots of treatments that can help you to improve, but again, you need to find a doctor and treatments are harder to come by in the UK - but not impossible!

Your first step needs to be to engage your parents' help and find a doctor who is familiar with ME to aid in your diagnosis.

All of the information at that website above is excellent.

If you do have CFS, I highly recommend that you connect with other teens with ME/CFS and that your parents connect with other parents.  I started two groups on Facebook that have lots of member in the UK - they are both private groups where teens and their parents can discuss diagnosis, treatments, school issues, etc.

Here is a link to the teen group:

http://www.facebook.com/groups/225903134138530/

And a link to the parents' group for your folks:

http://www.facebook.com/groups/164665786958252/

You might also be interested in my blog.  I have had CFS for 10 years and my 2 teen boys have it as well - I wrote about treatments and the science side of things as well as the emotional challenges...and some fun stuff too!

www.livewithcfs.blogspot.com

Good luck and let me know if you have more questions or feel free to leave comments on my blog.

Sue Jackson  

Chronic Fatigue Syndrome

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Suzan Jackson

Expertise

I have had CFS since March 2002. My 14-year old son and 10-year old son also has CFS. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFS at my blog: www.livewithcfs.blogspot.com.

Experience

Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.

Organizations
CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.

Publications
www.livewithcfs.blogspot.com

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