I just don't get it

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New Member

Date Joined May 2007
Total Posts : 4
   Posted 5/29/2007 8:45 PM (GMT -6)   
Hey everyone, just wanted to share my story.

about two and a half years ago I found some lumps in my neck (and various other body parts). I was scared to death. These actually came around the same time I had some type of infection (probably mono or something..I had a sore throat and runny nose for close to 6 months). Eventually I got tired of being worried and got a CT scan, blood work, etc done by my doctor. Much to my surprise he stated that the results turned up negative for various types of cancer that would cause this. I was thrilled! I thought everything was great. Over the past year-year 1/2 I have been experiencing a lot of fatigue/tiredness/etc. I have noticed that my physical strength is still great (I can still bench 210 pounds, lift very heaving boxes, do long distance running and such) but I have this constant feeling of needing to sleep. My doctor performed various tests, and he and I both are convinced its not some type of cancer. That is at least SOME relief. I really haven't gone back to him in about 1 1/2 years with this, because I'm not much of the kind to go to doctors and such (plus I don't really make enough money to do it).

Do you think I suffer from CFS?

New Member

Date Joined May 2007
Total Posts : 4
   Posted 5/29/2007 8:48 PM (GMT -6)   
I should also add that I have been steadily eating and gaining weight and such. I notice that it has been a lot worse over the past month (probably because I have been working..A LOT!).

Regular Member

Date Joined Mar 2006
Total Posts : 423
   Posted 5/30/2007 6:33 AM (GMT -6)   
It's really hard to say from this that you have CFS.  CFS is only diagnosed after being through just about every test possible and the doctor cannot find a thing wrong with you.  From what you're telling me, it sounds like he just ran a CBC and some tests for various cancers. 
I would first look into an endocrine issue.  Since you were under a lot of stress from these lumps, it's possible that your going through adrenal fatigue.  You working out and constantly running isn't helping either.  Whether this is Adrenal fatigue, CFS, or some type of virus like EBV, you need to be resting.  Take a few weeks off from any type of physical activity.  Eat very healthy, keep your calories 200-300 lower than your doing now.  Try to eat under maintenance for a lower caloric intake. 
I think you need to see and Endo and have blood work drawn up.  Have them check Cortisol, T3/T4, Testosterone, Estrogen, TSH, and ACTH.  You might want to look into a Saliva test as well.
I think you need to also have blood work done to test for Lyme, EBV/CMV (Mono), Anemia, Electrolytes, and various alergies (foods and Common).
Having a sleep study done wouldn't be a bad idea either. 
These tests and doctors are going to take a while, so be patient.  Try not to over do what you're doing.  If you have to be physical at work, get extra sleep.  You're not going to get better benching 210, or running a good distance.  Trust me, I tried this as well.  If I would have stopped working out when this started, I probably wouldn't be where I am today.  When I stopped working out and took breaks, I felt better (I had Mono).  However, I'm so goal driven that I pushed myself back into the gym, and back into the fatigue.
Take care of yourself.  You need to be very proactive in finding a good doctor.  Being someone who doesn't like seeing doctors isn't going to help you.
Good luck!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/30/2007 8:31 AM (GMT -6)   
db, I really don't have anything to add to what Orion told you - he gave you some really great advice. I also want to strongly encourage you to find a good doctor who will be very very thorough in trying to find out what is causing your symptoms. Let us know if you have any other questions. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

New Member

Date Joined May 2007
Total Posts : 4
   Posted 5/30/2007 12:03 PM (GMT -6)   
Thanks a lot for the replies everyone!

Does this sound like something that is going to kill me though? My overall health has NOT declined in the past several years. Just this stupid fatigue that generally started 30-60 minutes after waking up from sleep or a nap.

New Member

Date Joined May 2007
Total Posts : 4
   Posted 6/2/2007 11:45 AM (GMT -6)   
If this helps any, I have noticed that when I'm working or up the fire house (I'm a volunteer FF)..the fatigue is almost or completely gone. There are other times that I don't notice it either. It's mostly just when I'm at home sitting around that I notice it.

I wonder if its all in my head?

New Member

Date Joined Jun 2007
Total Posts : 10
   Posted 6/21/2007 11:18 AM (GMT -6)   
It sounds like depression to me. A doctor told me that when you have any thing/illness that is long term it is common to have depression settle in and we don't even know itis there as it came on very slowly. I do know that depression can mimic alot of different syptoms.

Regular Member

Date Joined Apr 2006
Total Posts : 206
   Posted 7/26/2007 5:29 PM (GMT -6)   
I think that it is interesting that you do not have symptoms when away from home and if I were you I would investigate that further. Could you stay somewhere else for an extended period of time (minimum of 2 weeks, and better at least a month) to see if your symptoms improve? It could be that you have molds in your house or something else out-gassing. So called "sick housese" can indeed make people very very ill, while looking beautiful, clean, etc. Has your house ever had any kind of water damage or leakage, or have you had any work done in your house recently? Have you lived at the same place for several years, including a year or more prior to getting sick? Are all your appliances working properly? Have you had the gas company come to make sure that your gas connections are all in good order? You might also want to think about what cleaning products are used at your house. Or, do you live in an apartment building that has regular extermination going on or lawn service that uses herbicide or fertilizer sprays? These might be some new avenues to investigate. There very possibly is one or more environmental factors causing or contributing to your fatigue and other symptoms.
"Don't be afraid."

Veteran Member

Date Joined Jun 2006
Total Posts : 561
   Posted 7/26/2007 9:24 PM (GMT -6)   

Hi db304,

I see that you posted a few months ago about your symptom history. I'm sorry to post this late but perhaps you will still see it.

Please consider the possibility of Lyme Disease and make sure that it is ruled out as the possible cause of your symptoms.

(I borrowed the following information from another poster at the Lyme Disease forum, I'm sure she won't mind me sharing it with you.)   

Below is a Lyme symptom list.  You can have any combination of symptoms:

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  Lyme needs continuous, aggressive treatment.  No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Spinal taps show Lyme in less than 5% of cases.


Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  

It is also important to learn as much as possible.  Recommended reading is Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. Also recommended is the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner. 

Hang in there okay. Good help is available, and you are not alone.

 Best regards and take care. I hope you find the cause for what is ailing you very soon and that you can get proper treatment.

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom free.


"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."


Please check out all the Lyme friends from Healingwell...


New Member

Date Joined Apr 2010
Total Posts : 1
   Posted 4/25/2010 10:46 PM (GMT -6)   
Orion, I too have had symptoms of being chronicly tired all of the time. I went through all of the tests. I came back negative on all of them. I have two questions for you....."When was the last time that you have had your eyes examined ?" and "Do you still have your wisdom teeth ?" I had vision problems that went undiagnosed because I could read an eye chart frontwards and backwards with no problem, however after long hours of CPU time and simulator time, I would get headaches and could barely keep my eyes open. This gave me a "run-down" feeling with no energy. I believe that the fact I couldn't keep my eyes open gave me the sensation of being tired. Also, to add insult to injury, I had wisdom teeth that were applying moderate pressure to my other teeth. This pressure was gradually applied over several years and went totally undetected by myself because of the long-term time that this pressure steadily increased. I now wear glasses for long term cpu use and had my wisdom teeth removed. Now, the stuffy head, run down feelings are all but gone, and I seem to have more energy. It also helps to keep active, get a hobby, even if it is housework. I found that coming home from work and doing nothing, led to boredom which led to "sleepy feelings". Try to eliminate the "bored moments" at home and consider the two issues listed above (if you haven't already) and let me know how it goes.


"This too, shall pass"
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