Chronic Fatigue Syndrome Support Group

I'm copying my reply to another discussion I would rule out the viruses listed in the 2 web site.

The more people that push there doctors for the blood test for viruses that are being found in people with ME/CSF and Fibro it backs up this XMRV virus link and the CDC will not be able to burry their heads in the sand



This is what I'm looking into.

I'm printing these out and bringing them to my doctors and hoping one of the doctors can order the blood test that are available and if I test postive for any of them they already have meds approved to treat them while I'm waiting to see what happens next with the XMRV virus.



reason for printing both out is more doctors will pay attention to something if it comes from an organizations they know. Also the article mentions that this new virus can cause latent virus to become active. While there is no treatment for this XMRV available yet and it needs more research these other viruses have test that can be done and some have treatments already FDA approved



http://www.cancer.gov/newscenter/p...



http://www.14wfie.com/global/story...

I know this mind sound like an odd question but what are your other symptoms beside the fatigue? Sometimes other symptoms might point to something other than CFS more than just thinking about fatigue does.

Have you had your iron level checked? Have your had your sex hormones levels checked?

Some others you might wish to check:

Lupus (SLE)
Fibromyalgia
Infectious Mononucleosis and Epstein-Barr Virus
Narcolepsy and Sleep Apnea
Pituitary Disease - various types of pituitary conditions come under this banner and are normally evidenced by symptoms combined with abnormality in hormone levels such as sex hormones, cortisol, TSH etc.

Not an odd question at all. The primary symptoms are exhaustion, muscle pain (especially when I climb stairs or go up an incline), sleep that doesn't help, excercise that makes things worse and I am haveing trouble with cognitive skills (especially memory). Secondary symptoms include blurry vison, worsening allergies, and I hear a high pitched whine that never goes away (that one is really annoying). I am also getting bruising on my arms and legs whenever I do heavy lifting (like grocery bags) but that may or may not be related to the other symptoms.

I forgot to say I have ruled out iron deficiency. I am anemic but I take an iron supplement that has brought my iron levels up.

I don't fit the symptoms for Fibromyalgia (although it's close), Lupus, or Narcolepsy. I don't fit the profile for sleep apnea (I don't snore and I don't weigh much.

I have not yet had my hormones or my cortisol levels tested, that's on my to do list. : ) I am going to see a new primary care Dr. in a few weeks and, as my last one said "beats me" I would like to have my ducks in a row when I meet with this one.

You know the story about the blind men and the elephant? Well, if the medical community are the blind men, I am the elephant.

I can relate to the "elephant" feeling. I think I might save that quotation for the future :-)

I have almost all the symptoms you just mentioned, so I think you're right in thinking you might have CFS. I'm currently also being tested for MS for some more recent symptoms that have developed, but it looks like you already ruled that out. Good luck and prayers for finding your answers!

Was there a definitive starting point to the onset of these symtoms, such as a viral infection?

There seem to be quite a few things that can cause easy bruising. I bruise easily also, but not necessarily as a result of lifting or anything like that... most of the time I just find myself with lots of bruises and no idea how they got there. I was reading online about it a while ago and one of the things that leapt out at me was anaemia - I don't eat meat and have had anaemia in the past, so I am making sure my iron levels are ok. It's good that you are taking iron tablets and are on top of that element.

You say blurry vision - have you had your eyesight checked? There have been threads on the CFS discussion forum here about eyesight - it seems quite a lot of people have problems focusing when and the more tired they are, the worse it gets because the eye muscles act in the same way as the rest of our body!

It does sound like it could be CFS. Problem with CFS is that the symptoms do tend to cross over with other disorders/diseases - which is a bit frustrating! It seems like a lot of people who have CFS have FM also. I know of some people with CFS who have no or little pain at all!

Let us know how you get on.

for the high pitched whine you might try "LIPO-FLAVONOID PLUS" it provides nutritional support to inner ear. I was desperate and tried it and it worked.

You can get it at walmarts or CVS they have a generic at walmarts that others have recommended.

Also have them check for any vitamin that someone could be deficient in, theres lots. Plus allergies (well sensitivities especially to foods) can cause alot of your symptoms too. The only way to know if your sensitive to anything is to do an elimination diet. Another thing is the lyme disease test they give is very innacurate so you should get the one that is more delicate to detect it (i forgot the name of it). Good luck!

You guys are a wealth of information.

I can't seem to relate the onset to any particular event. I have been experiencing symptoms over the last 2 years (at least) but it hasn't been bad enough to cause me to seek treatment (denial is a wonderful tool). It was only last January when I started going to the gym 4 times a week the it started getting really bad. Now I'm lucky if I can walk the dogs enough. It's frustrating.

I wear glasses already but in the last 3 months my vision has deteriorated considerably. You're right I need to go get my vision checked.

I need to find a good allergist then I will get that checked too.

I just went to a nutrition and wellness councelor and revamped my whole diet. I gave up coffee (which was hard) and sugar (which was harder) and backed off signifacantly on the carbohydrates. It hasn't changed much yet but I've decided that if I can't feel well at last I can feel virtuous. ; )

KatDC if you remember the name of that Lyme test let me know!

Prior to you very first noticing that you felt 'not right' did you have a lot of stress going on or any trauma happen? Did you have any vacinations or go on vacation anywhere unusual/tropical?

If your vision has rapidly deteriorated in such a short time, I would definitely prioritise going to see an optician. Do you get pain your head at all? What have the docs said about your vision issues?

Do I have stress in my life? (snorts with amusement)

Let's see I have a 16 yr old son with ADHD and significant social issues a 12 yr old Daughter with ADD, a Husband who travels, no family support nearby, and I have ADD myself and clinical Depression. Other then that no, no stress at all.

I think I have been under stress of one kind or another most of my adult life. (which would lead towards the diagnosis of adrenal exhaustion)

Actually what you were asking was did I have stress before I started noticing symptoms. Hmmm. My father died in October '06 after a long battle with Parkinsons aand dimentia. I started experiencing symptoms (that I can pin to a date) in February of '07. I don't know if that is close enough to be considered a causitive factor.

I don't get headaches very often. The last time I saw my Neurologist was in July when my vision was not as good as it should be but not alarming either. So there wasn't much to talk about. She did an MRI (at my request) and did find 5 nodules in the white matter of my brain. This is not considered a significant number (if it was 9 the diagnosis would be MS). I am due to go back in January for a follow up.

However, I will schedule an appointment with my optician asap.

Thanks for your ongoing input. It's been very helpful.