Chronic fatigue Sydrome

Question

I believe I have CFS.  I am always tired and can sleep just about anywhere and have other related symptoms including allergies, rash, ear infections, depression, achy bones, restless leg syndrome.  I went to my Dr. and had a complete CBC although my iron was a bit low, all checked out.  I told her something had to be done as I am always tired so she ordered a battery of more blood work.  That was over 3 weeks ago and I have not heard.  Since she only calls if something is abnormal, I am assuming everything checked out.  I do plan to call her for a follow-up tomorrow.  When I mentioned I seemed to have the symptoms for CFS, she said it was hard to diagnose and most 44 year old career woman with children have chronic fatigue.  I understand the diagnose is difficult but I have lots of friends who are not always having to sleep.  I can take up to 4-5 naps a day and am still tired.  So here are my questions:

1.  Does anyone out there have a suggestion for treating CFS?

2.  Is there a special type of DR. who may believe in such a diagnosis I should be seeing?

3.  If I am fatigued all the time and can barely keep my eyes open, should I give in and nap or should I be doing something else like taking a walk?

I am a 44 year old PE teacher and most people see me as upbeat and healthy.  I have been very tired for several years now and it is just getting worse.  I have the summer off and want to spend productive time with my children but so far ...all I do is nap!  Any help would be appreciated.

angelJoy · Answer

Maggie, Thank-you for your help.  I have an elevated ANA and my hemoglobin was a bit low and my Dr. has referred me to a rheumotologist.  However, I just got the appointment and it is for October.  I want to try some things in the meantime to try and fight this.  I also have a very difficult time waking up and sometimes have to go back to sleep, even if my children need me.  I can't seem to keep my eyes open.  I take naps every chance I get and I am still tired.  I am up frequently in the night and have restless legs and my body just aches.  I also have different rashes on and off and a feeling like somethiong is stuck in my throat.  I had a negative RF factor so assume that means I do not have lupus or rheumatoid arthritis which are things that have been mentioned in the past.

maggy may · Answer

After you are sure your DR. did a complete work up and you are sure it isn't another disease,then try some of these ideas. Find an MD who knows that CFS is real.Then you will be taken seriously. Your symptoms can be managed and eventually like most virus's it will lie dormant until aggrivated by stress or getting acutely sick like the flu etc. I read a very good article years ago on CFS and the woman was quite ill with it. She was using L-Lysine to treat cold sores and found her CFS improving,so she increased the dose and the CFS was literally gone after awhile. So I tried it and it worked!! You should only use it for 6 week periods (altho I used it longer in the beginning). It is an amino acid and also took care of my cold sores on my mouth as well. I used 500-1000 mg every day,and also took a good B-Complex every day (Thompson brand and it is a burgandy gel capsule) go to a natural health food store for it. I also took a good multi-vit and made sure I got 7-8 hours sleep every night and ate fresh NON PROCESSED foods.Your diet plays a HUGE part in how you feel and also how you fight illness.Sugar actually lowers your immune systam.I had CFS pretty severely when I was in my 30's and could barely function,until I did all of the above.Honestly before doing all the above I thought I would never get over it.Also be sure to exercise every day for 20 min. as that improves your immune systam and increases your energy. I couldn't do that at first but after a couple of weeks of above tx. and I was back to working out daily.I'd be interested to know if this helps you as it did me,so please respond after you try this!! You could also go online and purchase a good book on CFS as I purchased one and it also gave some good tips!I am now 48 years old and am so thankful I found these helpful tips,now those symptoms are just a memory! Maggy May

Kalio1 · Answer

Have you been checked vor viral hepatitis? I'd get checked for Hepatitis A B ad C to make sure ad rue those out. They can cause these symptoms, so can other liver disorders. Hep C can cause elevated ANA. What were your ALT and AST numbers?

angelJoy · Answer

MY ANA was 170 and I am going to a rheumotologist.  She seemed concerned my dad had non-hodkins lymphoba..bothers me.  Any ideas?

angelJoy · Answer

I just came from the Dr.  My blood results showed an elevated hemoglobin count and ANA count but she wasn't particulary concerned with either.  I forgot to write down all the counts but will.  Any suggestions about if there would be any connections with this and the fatigue?  I know ANA could show an autoimmune disorder but the hemoglobin seems strange.

Greeny925 · Answer

Hello,
I'm basically in the same boat as you only difference is I'm about half you age.  I've seen just about every doctor there is and had just about every test done.  I originally saw an Endocrinologists for my Fatigue she immedieatley sent me to have blood work done to check my thyroid and also to have an ultrasound of thyroid.  They all came back normal.  I then saw a Neurologists for it he took some tests and everything came back normal except for a little lyme in my blood which we're waiting on further test to determine if in fact it's Lyme disease which they don't believe it is, and he referred me to a Infectious Disease specialists to see if my cells could breakin down or something, since everything came back normal no Aneymia, nothing however I've been really tired for years as you have been.  They also did a Catscan which came out normal. So I know it has to be CFS but I guess they have to rule out everything first I'm not sure.  But I would definetly suggest like the others said getting your Thyroid check because fatigue is usually a sign of a Thyroid problem, also see different specialist(I.E. Neurologists and Infectious Disease Specialists) My Neurologists gave me some samples of a medicine called Provigil something like that to help w/the Fatigue and I take 1 every morning and it helps a lil bit, so u can ask for that in the mean time until they find out what's going on. Good luck!

charley1986 · Answer

Hey, I'm not saying that's what it is - but the achey feelings sure do sound like Fibromyalgia.  I can promise you that I will be praying for you that it turns out to be something else.  On the other hand, the feeling that something is stuck in your throat and the fact that you are hoarse, sends up some red flags for me.  I truly believe that if your thyroid is that large that it is causing you to be hoarse and discomfort, there may very well be something else going on.  Please push for doctor to further investigate your thyroid.  Good luck and let us know how it goes.

angelJoy · Answer

I will ask about the liver function and also fybro.  I am pretty active just pitched 4 games this weekend for my woman's softball team.  However,  when I am not being active my eyes are so heavy, I just can't stay awake.  I also at night just ache all over and have all kinds of different things happening.  The Dr. tested for thyroid and said it was fine.  However, I continually feel as if something is stuck in my throat and am aften hoarse and she said my thyroid was large and causing the discomfort.  I just want to do something to feel back to my old self!  I will call in the morning.

borninquisitive · Answer

You might be interested in this article and perhaps, share it with your doctor:
"Genetic Basis Found for Chronic Fatigue Syndrome"
http://home.att.net/~potsweb/cfs-news.html

charley1986 · Answer

Hi, I have Fibromyalgia and sometimes CFS goes along with that.  I have several suggestions - hope you don't mind.  First, if your doc hasn't done it, you need to get a thorough Thyroid panel.  Hypothyroidism can cause all the syptoms you mentioned...let me just say, as Hypo myself - now having a suspicious nodule on left side...it can really screw your body up.  Because, like your doc said, these symptoms can in some way apply to most 41 yr old/with children/career - you may have to push.  I know that I had to be clinically diagnosed with Fibro by a rhuematologist - two as a matter of fact.  I would be sure to call tomorrow about test results and make another appt to talk to doc about finding out what is going on.  The problem with CFS is that you look fine on the outside - but only you know how you feel - you know your body best.  Don't stop trying to find out what is wrong.  I would ask if vitamin deficiency has been looked at as well.  I'm not sure about CFS, although I believe that it goes hand in hand with my issues, but doc told me the best thing I can do to try and help myself and cut down on the pain and depression is to exercise...something that is not rigorous and not hard on the joints - such as swimming or walking.  It's hard as heck to do that when you feel like **** and are so tired.  There really isn't much else that you can do yourself at home - but like I said, I would go see doc and tell her this is really affecting your life.....and it is - and you need to find answers....as you will see here, alot of people have been looking for such a long time - but don't lose hope - help eventually comes - it's hard on some b/c symptoms could be a lot of different things.  Test, test, test....that's been my life for the past year.
I know you feel like **** and there is nothing wrong right now with taking care of yourself and resting when you feel the need.  Doc tells me to listen to my body...and when it says sleep - i try.  I wish you the best and hope you get some relief soon.  Please continue to post and let us know how you're doing.

Kalio1 · Answer

Have you had a liver panel done? Did your doctor check you and test for viral hepatitis? I'd get tested for hep a b and c to make sure that isn't causing your symptoms. Your symptoms fit for a possible iver issue. Sometimes the docs misdiagnose and call it CFS and it turns out to be hep. The test is a simple blood test. Have you had a liver function test?