Getting a CFS Diagnosis?

Question

This Summer I was diagnosed with a Reactivated Acute EBV infection. The last one being 10 yrs ago...I have noticed this time around the symptoms are much worse; excessive lymphitis, sleep disturbance, muscle weakness/soreness, leg spasms, headaches, Thrush(tongue) that won't go away after treatment, Eye infections and Ear infections, No appetite and nausea/excessive sleepiness after force feeding myself, and worst of all-depression.
This has affected every aspect of my life, including work, relationships-my marriage, etc. I relate to people that have a hard time getting out of bed and getting simple things done everyday like housecleaning. I'm concerned, since some of these symptoms and others(digestion) have been present for years before this recent infection. I am currently pumping up my immune system with herbs and supplements and taking drugs that treat the symptoms such as Cymbalta and Provigil. I was given a prognosis of up to a year to recover. How do I get a diagnosis of CFS?

My liver, kidney, and thryroid functions were in the normal range-No Hep C, also been vaccinated for that~! The Provigil is working very well for me. I take one every day. Not sure if the Cymbalta has made much of a dent...might need to try another kind. These are not forever just until I am feeling better..or at least that's what I tell myself in order to keep taking everything!

Answer 1

Hi sorry to hear your not well. It is entirely possible you have CFS, try to see a doctor who specialises in CFS/ME and fibromyalgia.

CFS is a rather awful complaint, and can be hard to get a diagnoses. Usually you have to be unwell for 6 months or more, and the doctor has ruled out MS, Lupus, Ross river, EBV and many other conditions.

Sadly the symptoms of CFS overlap with many other conditions, hence the doctor will and should test for the above mentioned illnesses, and a few others. There is NO test for CFS, which makes it harder to diagnose, and even harder for the medical professions and community to understand this condition.

I have listed some of the symptoms for you below, as well as some links for you to check out. Hope this helps.


Primary Symptoms of Chronic Fatigue syndrome: In addition to the fatigue, the International Chronic Fatigue Syndrome Study Group identified eight primary symptoms:
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in neck or armpits
Unexplained muscle soreness
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Sleep disturbance
Extreme exhaustion after normal exercise

Answer 2

Hi! I am married to a man who has 7 people diagnosed with CFS in his family. :( I work as a health care giver for his two sisters, so I am very familiar with this disease.

EBV seems to lead to CFS in many cases of CFS. There is a link there, although EBV is definitely not the only cause for CFS.

There are books for diagnosing this disease but many doctors do not know about them. You need to find a doctor that understands this illness... a specialist who can give you a good diagnosis. There are CFS support groups on yahoo groups and other places on the net. You could find one in your area that might have doctor suggestions. :)

The best website on the Net about CFS is called A Hummingbird's guide. This young woman from Australia has had CFS for 10 or more years... she has made a very impressive website with amazing resources! This would be a good starting point to see if your symptoms match and if this might be something our doctor can look into. There is hope... there are many hundreds of thousands of people who understand... you are NOT alone. Write me if you would like to talk. [e-mail]

Answer 3

Well they have never linked EBV to CFS conclusively. The syndromes are simliar though.
So to get a diagnosis of CFS you have to have the disease. There are specific criteria that have to be present like any other illness.
Look up diagnosing CFS in a search engine. That will help you find the criteria.
Ask your doctor to assess you for CFS.
Meanwhile take care of yourself. EBV takes a long time ot heal.

Answer 4

are you sure you don't have hepatitis c? they thought at one time or another i had ebv....

they are both in the same family of viruses.

i do have a question.....how is the cymbalta and provigil working for you? i have chemo brain *post 5 years....i also had the "fog" prior to chemo (the hcv passes the blood brain barrier)

i am afraid to take my provigil...i have taken 1 and a half and i have had the script for over 6 months. the other is strettera and i dont take that either (i have and am okay with the few sides from that).

anyway....sorry to answer your question with questions!

Answer 5

sorry to heart that you got EBV diagnosis, but regarding CFS.. i don't think you have CFS right now. there are some symptoms like 'weakness, sleep disturbances, headache' that matches it, since they are subjective symptoms,,. but, you also have objective symptoms or 'signs', like resistant oral thrush, lymphadenitis, eye and ear infections.. that are against the diagnosis of CFS. i think, you are just feeling the malaise due to EBV reactivation, and other symptoms due to depression. get the antivirals and adjust with antidepressants, and you will be fine.