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Posted 8/7/2008 5:04 PM (GMT 0)
I have not been diagnosed as of yet, however, know that I've had Epstein Barr in the past.  Does anyone know if there are links between EBV and fibro?  I think I read recently that there was a link between MS and EBV.

I've been to neuro for 3 years and not dx'd with MS.   I honestly feel that it's fibro.  Have felt pretty good for last 5 months and then a few days ago - WHAM!  can't think, too tired to do anything, burning in muscles - electric shock feelings - I sleep but wake up feeling like I was up all night.  redface

I never brought up Fibro to my dr - he never offered any info on it either.

dazed and confused

Posted 8/7/2008 6:04 PM (GMT 0)
Hi booboos, cute name, and welcome to our family. If they have ruled out MS, lupus and RA it could very well be fibro. Please read the fibro 101 thread, second thread on first page. There is a great deal of info in it and a list of symptoms. Some are surprised at how many symptoms fit them.

 

We have some with EBV that I'm sure will give you some input on it.

 

This is a great forum and you will learn a lot on here.

 

luv and hugs

Marlee

Posted 8/7/2008 6:09 PM (GMT 0)
Hi booboos and welcome to the family! In June this year, I was dx'd with fibro, cfs and cebv......the "c" in cebv means chronic/reoccurring. My first 2 rheumatologist visits, 7 weeks apart, were designed to get the first specific blood test results to rule out other diseases before giving a dx of fibro or cfs and start me on a newer treatment regimen of glutathione/atp injections once diagnosed (designed to relieve fibro/cfs/cebv symptoms by boosting the immune system & fighting off free radicals). The second visit was to compare the second test results with the first and to discuss how I felt.....any improvements or degradations.....and continue with another six weeks of injections leading up to a third visit for more comparisons and evaluations. From what I've learned from my rheumy and been able to gleen off of numerous internet sites, there does appear to be some kind of link between cebv (the chronic form) and fibro & cfs. My first blood test showed the ebv count to be through the roof......the second one showed it as only slightly high but my gabba globulin count as being low (another link to immune system function).

What does this mean........it means that I've felt the best I have in years over the last month and a half with only 1 minor flare of fibro/cfs appearing during that whole time and little or no ebv symptoms. The vast majority of people in this country have been exposed to Epstein-Barr with many developing mononucleosis or mono symptoms while others never do. Once exposed though, it will show up in a specific blood test for exposure. There is another specific test for activity which mine shows as being chronically active, thus the dx and treatment. A rheumatologist, especially one with real knowledge and experience with fibro and cfs, is usually more qualified to give these kinds of diagnoses through the running of much more specialized tests. I sincerely hope this helps you some.

Gentlest of hugs,
John
Posted 8/7/2008 6:21 PM (GMT 0)

Thanks so much for the info.  I've been battling the unknown off and on for quite some time. The 3 years with the neuro was exhausting and I never did get an answer. I was supposed to go back for another MRI of cervical spine, but never went.  I have been feeling good for about 3-4 months and then it just hit me again. The foggy feeling/pain/my jaw is tight and hurts - weird pains in my head and shock feelings in my side and arm.  I have never gone to a rheumy and think I will make an appt.  I know my family dr thinks I'm a hypochondriac and I've tried to stay away from the office. He said that I'm "hyper-sensitive" - huh??? tongue

Thanks again for the info and input Im not sure about the EBV being chronic - he never said - I also had former human parvo virus in the blood too. Neither was active at the time of the test.  I get migraines, tension headaches, back pain neck pain, muscle aches and stiffness/burning feeling. RLS, gerd, IBS, fatty liver, bulging discs.  I had gotten a very bad infection when I gave birth to my daughter 9 years ago - Strep B - which settled in my hip joint and ate away the cartilage. Eventually, I had to get a hip replacement (4 years ago), but sometimes I wonder if that experience triggered something.

Pam

Posted 8/7/2008 9:08 PM (GMT 0)
booboos (LOVE the name),

 

There could be 2 reasons your doc called you hypersensitive.  He could have meant that you are "extra sensitive" to just the mere touch of someone grazing your arm (I have a definite hypersensitivity where I broke my leg last year-you can't even touch that area).  Or, he could have been a jack*** and meant that you are highly emotional and react to anything and everything in a bad way.  Obviously, I don't know your doctor, but since you do, maybe you can figure out what he meant. eyes

 

Anyway, welcome to the family.  Fibro or not, we are here for you, OK? :-)

Posted 8/7/2008 9:15 PM (GMT 0)
Hi booboos and welcome! Just my opinion here...but so far medical science hasn't figured out what actually causes fibro nor exactly what is going on so...seems for someone to suggest that EBV causes it is a bit presumptive. Read good medical research, all that you can get your hands on. Learn all you can here and from good university or NIH studies. I use my local library all the time so try to find good books there too. Do be wary of those with the word 'Cure' in their title. sheesh...lol When there's a cure you can bet we'll be some of the first to know.

Hugs,
Chutzie
Posted 8/7/2008 9:16 PM (GMT 0)
Hi, Booboo, and welcome!  I'm glad that you joined us.  Some think that Epstein Barr can cause fibromyalgia but others think it's neurological or caused by a different virus.  The fact is...no one knows the cause of fibromyalgia.  Everyone is guessing right now but I think they are working on finding the cause so they can work on finding help for us and possibly a cure.  Wouldn't that be wonderful! 

 

Again, welcome!  I do hope to hear more from you soon.

 

Sherrine

Posted 8/7/2008 11:58 PM (GMT 0)
Thanks for all the support and information!  I'm so glad that I found you guys! :-)

I do take hydrocodone for back/neck pain, klonopin for RLS, prevacid (when I remember), flaxseed oil, coq10 and l-carnitine. Probably some other stuff that I can't remember right now!!

I recently stopped taking the pain meds because I have a fatty liver and was afraid I would do more harm - but it's hard. The fatigue and general feeling of malaise is too much sometimes. The pain meds also gave me energy but  I could not take them at night because of sleep.  I also noticed for the past several years that I do have tender points inside my elbows and knees and at a point around shoulder blade.   I decided that I was going to start looking for a rheumy in my area and start from there.

You guys are wonderful and I really appreciate the information, tips and support!

 

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