self diagnosis

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New Member

Date Joined Jul 2006
Total Posts : 1
   Posted 7/3/2006 1:07 PM (GMT -6)   
I am diagnosing myself with CFS.  I have had fatigue for over 5 years, have had a million tests and have not had 1, 100% positive diagnosis.  I have fatigue that is not helped by sleep, it's more like a muscle fatigue.  And, the less sleep I get the better I feel.  On the weekends I am able to sleep in on Saturday and Sunday and those are the two days I feel the worst. 
Here are the abnormal blood tests results I have had:
positive ana, speckled, 1:360 - has been positive for 4 years
positive anticardiolipin antibodies - has been positive twice
CBC - low RBC, low hemoglobin, low hematocrit, low RDW and high MPV - just tested in June - doctor said I had mild anemia and that my results do not explain the fatigue I am feeling. 
I am taking plaquenil (400 mg) and dexedrine (dextroamphetamine) - only 10 mg.  I was not prescribed this for chronic fatigue, but rather for a "possible" connective tissue disease.  This has been my diagnosis for over 4 years.  You would think in 4 years that the blood tests would start showing whether I really have a connective tissue disease or not.  And, my only symptom is fatigue.  I don't have any pain at all.  I sometimes feel like it's hard to climb stairs because my muscles are sore, but it's not painful.  And, if I walk for over 30 minutes, I will suffer for about 3-4 days because it makes my fatigue much worse.  I used to be a runner before I got sick :(
Anyway, I have read that plaquenil and dexedrine are both medications used in CFS.  Does anyone here take these medications?  Is there any other prescribed medication that seems to work better?  What can I take over the counter?  I am going to start working on my diet because it's not that good right now....I'm not over weight, but I need to cut out drinking mt. dew and eating sweets...maybe that will help.

Post Edited (invisible123) : 7/3/2006 12:44:29 PM (GMT-6)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/3/2006 10:56 PM (GMT -6)   
Hi invisible and welcome. I'm sorry you don't have any definite answers for your health problems. You very well might have CFS, but if it was just CFS alone you would not have any positive labs except the possibility of showing positive for epstein barr virus. I am in no way a medical professional, but your labs are very consistent with a connective tissue autoimmune disease. I'm in the same boat right now except I do have extreme pain. I was diagnosed with CFS a long time ago and then went into remission. Then almost 3 years ago I got really sick with symptoms that went beyond CFS and some of my labs now point to possible lupus. I take plaquenil and many other meds, but I've never tried dexedrine. I'm pretty sure plaquenil is more for connective tissue diseases than for CFS.

I agree with you about cutting out the sugar. I have the same problem and I have read that some people have responded well to cutting out sugar and refined carbs like white flour and white sugars.

I don't know if I've helped much. Feel free to ask any other questions you have. If you are interested you are also welcome to post in the lupus forum (I moderate there too). There are members in the lupus forum who have undifferentiated connective tissue disease as well as people who are in diagnosis limbo.

Take care and I'm glad you joined us here.
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain



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