Was wondering if anyone had any idea on the following.
After months of feeling worn down and having really bad joint pain and muscle weakness, I went to the doctors, who ran a load of blood tests, and found "reactivated form of glandular fever" and very very slightly elevated white cell count. She said I must have had the EBV at some point. The only thing I can remember is about 6 months before, having a very sore throat and high temperature but only for about week. Ever since I have had recurring sore throats, muscle weakness, joint pain, every so often I get a swollen lymph nodes, which sting but not redness; they only swell for a couple of days then all is fine again. I feel tired all the time, and get tired/breathless from things like pushing a trolly around the supermarket or walking the stairs!
I am going back to Doctors as it has been a few months since my last tests and I am fed up.
I wondered if this sounds like anything anyone could share with me.
Hello and Welcome,
I am sorry you feel so lousy. This does sound like your EBV has been reactivated. Usually you will have to let the virus run it's course, but the lasting affects can lead to CFS. It sounds like this has brought on CFS for you. I would get in to see a holistic doctor in your area or a Rheumatologist who treats Fibromyalgia and Chronic Fatigue Syndrome. Where are you? Your profile doesn't list a location. Are you in the US? I can give you some website to find some good doctors in the states, but obviously this won't help you if you are in the UK. You may want to update that. I hope these links help you.
Also, there is an EBV forum on MedHelp if you want to check that out too. Good luck and keep us updated!
Oh sorry, I am in the U.K. I am going to talk with my G.P on wed and then will take it from there. Thanks for these words of advice, it is kinda reassuring in a way because I have been panicking about really serious illnesses and didn't realise that glandular fever could have such lasting effects!
sounds like dr is correct. most or all of us with SEVERE FATIGUE had a previous viral illness, and never quite got up again. this viral illness in your case seems to be a recurrence of glandular fever.
please REST as much as you can.
do not push yourself or overtrain or think that it's doing any good to do loads of exercise to build up strength - it doesn't work that way now..!
maybe stick with this dr, as good ones with any understanding of the cause and condition are, well, unfortunately rare at the moment.
fatigue doesn't show up on any tests. some tests can indicate causes of inflammation and mineral levels etc, but largely it's an invisible disease. take care.
Just wondering, if anyone had any idea as to why my lymph nodes sometimes swell. I have a weird anxiety thing when it comes to immune system things (mainly stemming from a friend who was diagnoses with lymphoma). When I read about post-viral fatigue type syndromes, this does not appear to be a symptom?
When I got a FBC, my white cell was only slightly elevated and because of the reactivation of the EBV, it was not flagged up and I was told it was not high enough to be anything bad. I intend to bring this up with my doctor.
I just wondered if anyone had any experience with why my lymph nodes may be swelling/stinging intermittently?
She is running a load more repeat blood tests, including things like a celiac blood test even though she said that she expects it to come back negative. She says that she is going to check everything possible with blood tests that may show up something before considering CFS and referring me on to a support team. She said lymph node swelling and stinging is not concerning if it comes and goes and could feel nothing of concern on physical examination.
I am hoping for some answers soon, I am so confused!
I had mono when I was 8 years old and was never the same after that! I spent years suffering with fibromyalgia, chronic fatigue syndrome, headaches, ect. When I was 19 I met a herbologist who told me to go gluten free. I immdediately noticed a huge difference. It took a few months, but eventually the pain completely went away! It turns out that if a person has the gene for Celiac disease, mono, or any viral infection can sort of "trigger it into play." Hope you get better soon!
Sorry for the delay in my response. I am so sorry to hear you have to go through so much with your doctor. Your symptoms do sound like post viral fatigue from a reactivation of the Ebstein Barr Virus. Most everyone will catch the EBV at some point in their lives. Others like you will have episodes of reactivation, which some folks think is the cause of CFS and even FMS. I have swollen glands in my neck that won't go away and I do have FMS. My sister on the other hand has had several swollen glands all over her body and much trouble, and I believe she has CFS. She has actually had surgery twice to remove glands in her armpits. Her case is very rare though, so I am absolutely not trying to scare you.
Your best bet is to do as much reading and research as you can about CFS/ME and potential ways to take care of your body. You will have to be your own advocate for your health because, unfortunately, many doctors have an old belief that CFS/ME is a somatic disorder, or in other words, psychological. They may try to treat you in that manner. U.K doctors are notorious for this behavior.
Now, with that being said. I originally posted two links to help you find a doctor who would understand how to treat you properly. I did that before I knew where you were. The Co-Cure website is still a good site that you can use because I believe they do have doctors listed in the U.K. I would definitely check it out. Here is the site address again. Let me know if you have any further questions. Send me a personal message if you need to. Good luck to you.
Dr. David Bell has some interesting insights into the causes of post viral fatigue, FMS, CFS/ME etc. I recently read his book "Cellular Hypoxia and Neuro-immune Fatigue". (very inexpensive - found it on Amazon.com) He is also the author of "The Doctor's Guide to Chronic Fatigue Syndrome".
He of course does not have a cure, but I appreciate his research. I think he's on the right track. You might want to make your doctors aware of these books.
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