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Why most test results are "normal"

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Chronic Fatigue Syndrome
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Posted 7/8/2013 10:41 AM (GMT -7)
This may be more of me venting than actually asking this question, but how is it that one can feel so different now w/o some test result showing an abnormality? I have had this now for 29 months, and for the life of my can't understand how all these tests can't reveal something.  I look at my life pre and post illness which kicked this off, and see so many changes in my body.  How can I get 8 hours of solid sleep and still be so tired all the time? With something broken down in the body like this, I am confused how something doesn't show up somewhere given all the medical technology.  For me, a couple anti bodies are slightly high, and my testosterone on the low end of normal.  But....those are the only tests that even hint at anything out of whack.  How can that be?  Curious what you all think.
Posted 7/8/2013 7:42 PM (GMT -7)
I've had CFS/FM for 35 years, since the age of 38. The only consistent abnormal reading on my bloodwork, in most of that time, was a high white cell count. It was always between 14 and 16, indicating infection. My BP started to rise when I was in my mid forties.

I wanted something to show up on my tests, but always, most were negative. Now in the last two years I've developed diabetes 2, low thyroid, high cholesterol, and high levels of microalbumin. and serious gum and tooth problems.

Now, the doctors want to treat these conditions, and this is something that needs to be done, but sometimes it seems as though they think when I get these conditions under control, I'll feel good.

This is NOT what's going to happen though. I'll feel better than I do right now but I'll still be very, very sick from the CFS/FM, just like I've been for years. They still don't get it.

There are no CFS doctors in my area and it's been a lonely battle trying to convince medical people how sick I feel and how much pain I'm in. They keep looking for other explanations.

This is a lonely confusing disease at times. Memaw
Posted 7/8/2013 9:22 PM (GMT -7)
I know how hard it is to get test after test & have nothing show up, it is so discouraging. I used to think I should be the healthiest person around, I should feel so good but I feel so bad. Everytime I would go to get my test results I would have my hopes up & then they would be dashed & I would get really upset that once again "nothing". Research now is looking at mitochondrial disfunction & auto immune disease that is not with the T cells but with the B cells, not detectable with the usual blood tests. Let's hope we get to have tests that show how sick we are.

With your sleep, do you take anything to help you? I used to sleep for days & still get no refreshing sleep, wake up just exhausted. Now I take Tizanidine & Trazadone, one is a muscle relaxer & the other helps me to stay asleep. I sleep about 12 hours per night, that is how long it takes me to get good quality sleep in. I tell you it is also the bane of my existance, I have to only stay up 12 hours in order to have some kind of an organized life. My pills help in that way too, I get really sleepy after I take them. I am constantly trying to stay up later & later then i have to pay for it.

Take care of yourself & let us know how you are doing. Many hugs, Denise
Posted 7/9/2013 6:46 AM (GMT -7)
It is strange in a way to hope for test results that are not normal.  I have been so confused when the tests show nothing wrong, but yet I feel so drained and tired.  I have always pointed to 2 symptoms that really tell me something is off....the unrefreshing sleep, and the lethargy/post exertional malaise.  Having been an endurance athlete prior to all this, I know what recovery feels like after pushing yourself.  With CFS, it is so different, like you cannot replentish energy again.  That would fall in the mitochondrial area is my guess.  I take benadryl for sleep, and melatonin.  This helps me usually.  I take vyvanse, D ribose, vit B, and magnesium malate during the day which allows me to still work, and have a limited social life.  It still is so frustrating to not know exactly what is off, therefore having the ability to design a proper treatment plan.  This illness even has the Mayo clinic baffled as I went there a year and a half ago to deal with this.  I remember driving down there thinking that if anyone could figure this out, it would be Mayo. But, as you can tell, no answers, only vague theories.
Posted 7/10/2013 10:22 PM (GMT -7)
I, like you, will point to unrefreshing sleep & post exertional malaise to remind myself that yes I am sick. I have days that I just think I am depressed or just lazy & I have to give myself a break & realize I am sick. Don't want to be & didn't ask for it but it is what it is.

I take CoQ 10, magnesium malate & vit D3 to help me have some energy I also, user 85% dark chocolate for more mental clarity & cognative awareness, it has really helped me. We all try different things to help us cope with this illness but what we need is a break through in research.

So you are still able to work, I am so proud of you, I can't even imagine working. This illness takes so much out of us, I hope you can continue. Hugs, Denise
Posted 7/12/2013 9:29 AM (GMT -7)
Still working is hard enough, I just want to keep going for a few more years if possible.  Obviously I need the income and insurance coverage for my family.  I think with the supplement regimine I can continue working as it keeps me able to work, but there are days when it is really a grind.  I am lucky to have a decent amount of vacation days to use if I am not doing all that well.  But there are days when I feel like death warmed up, but put on a face of normalcy.  I also agree, a medical breakthrough is really what we need for us to see a path toward recovery.  I hope I am around to experience it being 50 years old.
Posted 7/16/2013 6:55 AM (GMT -7)
Yeah, it is frustrating when all the test results are normal, I think for two main reasons: we want people to actually believe and understand that we are actually sick; and we hope that whatever's wrong can be identified and treated so that we can just get better! The doctors can't properly treat an abnormality that they're unaware of (because the test results don't show it).

The only things that the health professionals can find wrong with me are:
•slight scoliosis
•flat feet
•slightly high ANA levels (consistent: it was 1:160 two years ago and it is the same now)
•tender points are extra sensitive
•allergies show up on testing
•food intolerances worked out by dietician
•the Occupational Therapists can also find weak nerves and trigger points to work on

Hmm... Never realised that so many of my health problems are actually detectable...
Posted 7/23/2013 3:40 PM (GMT -7)
My thing that annoys me most is when tests like CRP and ANA and RF and ESR etc all come back normal or low. Doctors are looking for high values only.

You can be so chronically ill and in pain, yet some simple blood tests wont show or reflect that.

I've read of many others online in a similar boat.

Don't forget to have progesterone levels tested and get them to normal. Plus iron. Vitamin D needs to be in the upper range.

Cortisol levels are essential and a big factor in many with CFS.

Everyone's CFS and symptoms are caused by different things. But still, it would be lovely if there was a "be all and end all" test.
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