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Could I have CFS?


Posted by fallenxangel

Hi. I have been suffering with major fatigue that gets progressively worse. I am 27 yrs old, Mother of 5, 3 at home.

I am constantly tired, lethargic, basically feel absolutely knocked out all the time. I dont have the energy to do anything, even going to the bathroom takes alot of effort. If I do manage to get up and do stuff or go out I am absolutely knocked out for days.

I suffer with muscle pain and general aches, joint pain, flu like aches etc where I go hot and cold, sore throat and my glands are painful.

I have shakiness on and off and at the moment am very dizzy and lightheaded, it feels like my eyes are moving left and right really fast over and over again.

My concentration is a nightmare and struggle with reading certain things and getting my words out sometimes, I never used to be like this, I was always a good reader/speaker.

This has been going on for probably most of 2009 till now altho gotten progressively worse over the last say 6 months.

 I have to spend most/all my day in bed, even going downstairs to watch TV knackers me out, never mind trying to cook/clean. Luckily my partner is very supportive and does all the cleaning/cooking etc. 

I only leave the house once a week for about 15 mins to get weighed at Weight Watchers and am straight back in bed. 

I want to see my doctor about it as I am so sure I have CFS but I am scared of being mocked or ridiculed as I know alot of Doctors dont believe in it. 

 Thanks, Tobii-Rhea x

 

 
Answers (1)
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Dear Tobii-Rhea -

 

It sounds like classic CFS.  People often ask questions in this forum, wondering if they have CFS, and I have to explain that CFS includes many other symptoms besides fatigue (the name is very misleading!), but you've listed all of the major symptoms of CFS in your note.  You need to see a doctor immediately because, although there is not yet any cure, there are some treatments that can help you to improve the quality of your life.

 

The best source of information on CFS is the CFIDS Association of America.  Here is their basic information page on CFS:

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

Under the Diagnosis topic, you'll find diagnostic criteria and a long list of other medical conditions that cause similar symptoms and that need to be excluded before a doctor can diagnose you with CFS.  This is very important.  Even if you do have CFS, it is possible that you have some other - often treatable - conditions that are contributing to your symptoms, like thyroid dysfunction or anemia.  The CFIDS Association also has a self-quiz on CFS:

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

 

Another source of information is the CDC:

http://www.cdc.gov/cfs/

This includes diagnostic criteria for doctors.  Print a copy of the diagnostic critera and take it with you when you see your doctor.

 

Although you are correct that there are some medical professionals who ignore the last 20 years of valid research on CFS and don't "believe" it's real, that is slowly changing, and there are many wonderful doctors who know about CFS and can diagnose and treat it.  If your own doctor is not knowledgable about it, you can check this list for one who is:

http://www.co-cure.org/Good-Doc.htm

 

You could also try a Fibro and Fatigue Center.  Here is their list of centers:

http://www.fibroandfatigue.com/center_locations.php 

It depends in part on what doctor you get at a F&F Center, but most people I've heard from have been happy with these - they should at least know more than your average family doctor (though I lucked into one who knows CFS well).  Attitudes are changing about CFS, in part thanks to some remarkable research in 2009 that discovered a new retrovuris associated with CFS - most informed medical professionals now recognize that CFS is almost certainly caused or perpetuated by some sort of infection.  Here's a brief overview of this new and exciting research, which you can also share with doctors:

http://www.wpinstitute.org/xmrv/index.html 

 

Although there are many different treatments that might help you, and a doctor needs to test you in order to exclude other conditions and figure out what might help, one thing you should know about is Orthostatic Intolerance (OI), a condition of low blood volume and low blood pressure that affects more than 90% of people with CFS.  This is almost certainly what's causing your dizziness and light-headedness, as well as contributing to many of your other symptoms.  There are lots of treatments that can help with OI.  here is some info on, from the doctor who first discovered it in CFS patients:

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

 

If you have other questions  or have difficulty finding a doctor who can help diagnose and treat you, please feel free to contact me directly, through this site or through my blog, Living with CFS at www.livewithcfs.blogspot.com.

I have had CFS since March 2002, and both of my sons have it. There are millions of people all over the world with CFS who have experienced exactly what you are going through.  It helps so much to know you are not alone.  There is a wonderfully supportive online community that you can see when you visit my blog.  Many of us are mothers just like you.

 

You are not alone, and there are treatments that can help you.  Best of luck and please let me know how things work out for you -

 

Sue Jackson

www.livewithcfs.blogspot.com 

NOTICE: The information provided on this site is not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on Wellsphere. If you have a medical emergency, call your doctor or 911 immediately.
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