Chronic Fatigue Syndrome/Fatigue

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Question
Hi my daughter is always tired, she saw the cardiologist,neurologist,psychiatrist,endocrinologist, and rheumatologist. She had several tests ( from each doctor,) and the results were negative. None of them know why the tiredness, she can't walk more than 2 blocks bc she gets exhausted, lightheaded,nauseous, her minds goes blank, she recovers when she rests,also she has lack of concentration all the time day and night everyday, and that interferes with her studies and when someone is talking to her, she's stressed out all the time,she also has heat intolerance, and  she is always tired but the symptom worsen when she walks or do house chores,The rheumatologist said she can't prescribe a medicine bc the tests showed nothing wrong. Is there a natural supplement she can take? Is there a fatigue specialist? thanks.

Answer
Sorry for the delay in responding - I was busy with my family over the holiday weekend, and I wanted to have plenty of time to devote to answering your questions.

It sounds as if your daughter almost certainly has ME/CFS, often known in the US as Chronic Fatigue Syndrome. It's a trivial-sounding name for a very real disease, an immune disorder. Lots of different medical conditions can cause fatigue (as your long list of specialists has already checked), but it's the other things in your note that tell me it is probably ME/CFS: lightheaded, brain fog, lack of concentration, and getting worse with exertion or exercise. In fact, that last item is the defining characteristic of ME/CFS, and you don't see that in many other diseases.

Also, your experiences with all the doctors and all the tests are very common for people with ME/CFS. There is not yet a diagnostic test for it, and - unfortunately - few doctors recognize its defining symptoms.

Luckily, there are some doctors - not many - who have become experts in ME/CFS & can treat it...and that's the really good news - there ARE treatments that can help your daughter to feel better and function better.

So, first, here is an overview of ME/CFS and its symptoms - at the bottom of the page is a self-quiz:

http://solvecfs.org/what-is-mecfs/

Your first step is to find a doctor. If you let me know what region you live in (sounds like you are in the US?), I can tell you which ME/CFS expert is closest to you - they are in NYC, NC, FL, UT, CA, with a few others scattered around. Please feel free to e-mail me instead of using AllExperts (jacksonde@comcast.net).

Although the exertion intolerance means she almost certainly has ME/CFS, another diagnostic area to consider is Lyme disease and other tick-borne infections - they are now prevalent in all states & every continent (except Antarctica!) and can be difficult to tell apart from ME/CFS. In addition, Lyme is a known trigger for starting ME/CFS, so many people have both. I have had ME/CFS for 14 years and have had Lyme twice in that time. My son has had ME/CFS for 12 years and also has 3 tick infections (Lyme plus two others) - we missed those infections for over 3 years & he just got sicker and sicker. Waiting so long to treat these infections makes them very difficult to get rid of, so I highly recommend you see a Lyme specialist immediately - if for nothing else than to rule out tick infections. None of the doctors you've seen can do this - the blood tests used for Lyme only catch about 65% of all cases, so you need to see someone who has a lot of experience with ALL of these infections & can recognize the symptoms, known as an LLMD. Here is more info from my blog:

http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.

And here's how to find a Lyme specialist near you:

http://mylymediseasetreatment.com/lyme-disease-general/how-to-find-a-lyme-litera

Like I said, there are LOTS of treatments that can help with ME/CFS...but few doctors know about them. Here is an overview of treatments that have helped my son and I:

http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html

That's my own blog, with lots and lots of info that can help you.

Please pay particular attention to the section on Orthostatic Intolerance. It is an integral part of ME/CFS (and often Lyme, too) and treating OI often brings dramatic improvement, especially in kids and young people. Here's more info on OI - your description of your daughter's symptoms tells me she has it:

http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html

Finally, no matter what happens from here, you are going to need plenty of support, both emotionally and with good information & facts, too (we patients often find that we know more than the doctors do!). I started a group for Parents whose kids have ME/CFS, Lyme and other related illnesses on Facebook:

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

Again, sorry for the delay - please feel free to e-mail me and join the Parents' group. This is not an easy road, but you are not alone.

Sue Jackson

www.livewithcfs.blogspot.com  

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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