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FIbro and Epstein Barr virus?
33 Replies
sosad - September 7

Yes, I believe there is a connection. I had mono a number of years ago, and I feel like I never have been the same since. I did have depression prior to the onset of Fibromyalgia, but it has gotten worse since the mono. Epstein Barr Virus has something to do with this.

 

greeneyedlady138 - December 6

I've had allergies my entire life to nearly everything. As a child my diet was extremely limited. As a teen I had mono. I have been dealing with pain my entire life it seems. I was diagnosed with RA in 1995 now diagnosed with Fibro too. Since I have a significant weakness on my left side they are referring me to a Neurologist to confirm if I have MS or possibly had a light stroke and didn't realize it since I'm used to pushing my body past the pain and fatigue.

 

Sonja44 - December 7

I had horrible Chicken Pox as a kid...pox IN my nose, eyes, ears...everywhere. I had the mumps in all neck glands as well. Then in college I got Mono pretty bad. I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia at age 36...I'm 45 currently. I do believe these things are related somehow.

 

Cjbetty - December 24

Seeing as I am brand new to being dignosed with Fibromyalgia is it feasable to ask my doctor if my blood was tested for EBV and Lyme disease? I ahve had mono 2wice once in 98 and then in 2004..So now I am very curious as to if I really have fibromyalgia and not EBV..

 

dbl219 - December 30

I have a lot of food allergies: lactose intolerance, and a bunch of sinus-congestive allergies I've inherited from my mother such as tomato, corn, and wheat. I've also suffered from chronic migraine headache since I was a child.

I'm considering being tested for EBV and Lyme, but I'm doubtful, as everything I have appears to be genetically inherited. The migraine and all the allergies are shared by my mother, and one of my brothers. Additionally, my aunt, my mother's older sister, who is, like myself, a redhead, fair-skinned, and the oldest of three siblings, also has fibromyalgia.

I've never had mono, as far as I know, and when my first FM symptoms developed when I was 18, I thought I did have it, and was tested. It came up negative. Furthermore, I could probably count the fevers I've had in my lifetime on one hand. Even when I get a very bad cold, I tend not to run a fever, and I end up on antibiotics usually once every one to two years, less than most, I think. My immune system is actually pretty good, despite the fact that I'm chronically sleep deprived and run down all the time.

I was in a car accident and got some minor whiplash a few years ago, but it occurred a year or two after the intial onset of my FM symptoms, and didn't seem to complicate or exacerbate my condition in any fashion.

So basically, I feel my FM is purely genetic, inherited, and centered in my central nervous system. There's some who still say FM is auto-immune, but my rheumatologist, who's been working with auto-immune diseases for over 40 years, staunchly supports the CNS conclusion. Reading over the information on this website, specifically about the neurotransmitters and chemicals which are being under or over-produced by the body of FM sufferers, and which apply exactly to my symptoms, cause me to point to a CNS disorder even more.

 

zoomom - January 27

My EBV was 2640 and my nuclear antigen was 1070. The person I used to be is no longer visible. I can't even take a shower, do my hair and make up without being completely wiped out. Cleaning and doing daily routines around the house are impossible. I was first diagnosed with Fibromyalgia then EBV. I read everything I can get my hands on. Recently I found something on cancer that is linked to EBV. I am now scared to death!! My mother passed away in September from lung cancer than metastesized to her brain and other places in her body. She too had Fibromyalgia.

 

sanddie - March 27

I'm not quite sure why I ended up with FM flare up, as I had joined Weight Watchers to lose weight after seeing my Mom going through a quadruple bypass. Considering the genetics in our family for this, Diabetes and other things, I needed to get healthy. Three weeks into Weight Watchers, I began a workout routine mainly of swimming 1/2 hour three days per week. Over 7 months my workout routine progressed to the point I was eventually swimming front crawl (40 laps, which is about a mile and a half) in 45 minutes, 3 days per week. The 3 days in between this, I did interval training for about an hour and a half a day. I ended up losing 60 lbs in 70 months and felt GREAT! I was also under the care of a sports doctor and was very healthy-- blood work was checked and any other tests to make sure I was losing weight by eating healthy. Just when I reached my goal weight and became a lifetime member at Weight Watchers, I got sick with a horrible stomach flu that last a week. I waited a week to get back to the gym in my regular routine to let my body rest. Then when I went back to the gym, started out slowly every other day. I relapsed to a horrible respiratory infection with high feeling, body aches, etc... Well, that was the start of FM for me. I was practically paralyzed for two months in my shoulders (like knives jabbing). The Doc thought maybe it was impingement syndrome because of how much swimming I had done and we monitored me over a few months. Unfortunately, the pain never stopped-- got better, but never stopped. I was more upset with not being able to swim as I had been than anything.

Well, it's been one year now and my exercise has basically came to a halt two months ago. It got to the point when I got up to go to the gym before work, I would last every other day for a week and a half, but then it would catch up with me and I'd be exhausted in bed from 6 pm (when I got home from work) to 6 am, when I had to get up for work. It would take me about a week to just start getting energy back after that... Well, needless to say, I am reluctant now to exercise at all. Often, I'm in tears because of what has occured. Especially knowing how important exercise is and I was doing it 6 days per week, tried going down to 3 days and modifying it, only to become exhausted now and barely able to function. :( I'm trying to be positive, but so far now have gained 12 lbs (I'm now above my Weight Watchers goal by 12 lbs as a result of everything). I eat poorly cause I'm stressed and somedays just feel like why should I do anything healthy because look where doing anything healthy got me. I know this is a bad attitude to have, but I'm tired and very upset about all of this-- I don't want to take medication for pain, but am so tired to exercise. I barely can get through work each day. :(

 

sanddie - March 27

OOOPPS, I lost 60 lbs in 7 months, not 70 months. :)))

 

axxie - April 1

Sanddie, not sure what to say, except to say that I suffered the same, when I complained to my doctor of many years, she kept saying to keep on going. I felt she was crazzy, after several months of this, I was crying to my mother on the phone how exhausted I was and that I actually thought I would end up in a bed for the rest of my life. Subsequently, I changed doctors and it took awhile to be diagnosed with Fibro, went to every test you can imagine. I also stopped doing anything physical, had problems going to work, to the point of sheer exhaustion. I lost things, misplaced things, blamed my coworkers and finally announced to my boss that I just couldn't handle working, I told her it must be the stress, and that I needed to get my head screwed on right. Was diagnose with FMs, chronic fatigue, hepatytis, and depression. EPB came back ok, no mono, blood sugar was a little high nothing to worry about, hypo. When it all started, a bad flu, I remember the day, it lasted a couple of days.
Anyway, I'm still not back at work, and I've just reapply for benefits, so I have no money, hubby returning from Afghan in a few weeks, and I feel the whole earth has caved me in. I can't clean the house, I don't care about eating, and I'm sleep most days. As for doing anything, I do the bare minimum, I still need help to get things done. Now I feel that my brain is working on overtime, cause I can't keep track of my spending, and I feel that I'm a big failure.
The depression stems from the pain, I have been told by my doctor and was told I'd have good days and bad days, right night I'm back at the bad days, in so far, there more of those then good days.

 

hnosker - May 6

I was diagnosed today with Fibromyalgia after years of problems and two months of being stuck in bed. I originally was told that I was recovering from mono. My Ebv number was 2888 and then suffered a stomach ulcer and then told that I have Fibromyalgia. I also wondered about the link between mono and Fibromyalgia. It has been a very frustrating period for my family and I. I am the mother of five daughters and I wonder if the mono caused this?

 

ericahogan - May 16

I had epstein barr in 1998 then was diagnosed in 1999 with Fibromyalgia

 

egret326 - August 6

Yes, years ago when I was 29 I had a very high Epstein Barr count and off the charts allergies which I was also tested for. Everything you list happened to me too.

I believe that the EB was related to the fibromyalgia I have now. Ocassionally I see this linked in articles which do not ever reference any studies on this but seem to identify a possible correlation.

For me this occurred in the 1980's before the diagnosis for chronic fatigue syndrome lumped all of our mysterious chronic ailments. The good news though was I had extreme fatigue for about two years and then went into a remission that lasted until my late 40's. That's when the fibromyalgia symptoms became very apparent and the fatigue returned.

As far as my remission went I have no idea what happend to change that except that I was very certain to maintain a good diet, vitamins and EXERCISE. Of all of those things I stress the exercise because I think it helped the most.

This is almost comical in the telling but I got a rowing machine (with actual rowing arms) beause it was low to the ground and If I got too fatigued I wouldn't have far to fall. I started out doing 2 minutes and then would go directly to bed and nap for two hours exhausted. But I kept at it and in a 6 months I was up to half and hour and the fatigue was lessening. Eventually I got up to an hour and by then was pretty much symptom free.

I am so sorry to read you are in the same boat - excuse the pun. what's saddest from my point of view is almost 30 years and still no one has a clue what this is or how to treat it.

If you can try exercise and stick with it.

Best wishes for your recovery.

 

taykalhogs - December 21

I was diagnosed first with the Epstein-Barr virus and then about four years later with fibromyalgia and chronic fatigue syndrome. It does sound like there may be a connection. I also have Chiari Malformation, degenerative disk disease of the cervical spine, degenerative joint disease of the hips, kyphosis of the cervical spine, hypothyroidism, bursitis in both shoulders, and TMJ disease and I'm 46 years old! Hopefully none of these others are related and I just happen to get everything!

 

taykalhogs - December 21

axxie, I know exactly how you feel but please don't give up and please don't think you're crazy or lazy. And never, ever think you are a failure. You cannot help the way your body is acting, especially during flare-ups. Rest is good. Who cares what your place looks like? Just do the best you can. I've been going through this for 19 years. Do you ever get really bad headaches? If so, check out Chiari Malformation and look at the symptoms. It is a rare disease but only because doctors don't really know about it. People are often misdiagnosed when they really have Chiari. I know I was. They told me I had everything from sinus problems to mental problems because of the headaches, tiredness, brain fog, etc. I also have FMS and a bunch of other stuff but check out the Chiari web page. I know you'll feel better once your man gets home. I'm praying for both of you! And don't be so hard on yourself. Only do what you can do and screw everything else!

 

Canada17 - December 23

My doctor said there are a few things they have found to be causes for FM:

Viral
Traumas to the body - childbirth, whiplash, bad falls
Abuse (physical, sexual, mental)
Heredity

I think mine is inherited because I can remember being very young and very much in pain for no reason. I was always labeled a wimp or "sensitive"

Then at 16 I had a terrible case of mono. I lost 30 pounds in five days and only weighed 120lbs to begin with. 90 pounds for a 5'2" 16 year old is no good, neither is dropping weight that quickly, especially when you are no where close to being considered overweight. I had a very bad allergic reaction to penicillin.

When I was 21 I sustained whiplash severe enough that I was unable to move my neck for a couple weeks. Then over the next year I was rear-ended two more times but to a lesser degree.

When I was 24 I gave birth to my beautiful baby girl. I was in labour for 42 hours, 9 hours of hard labour. It wasn't the easiest pregnancy and definitely a hard delivery. I think I may have done some damage to my lower back/hips/tailbone. My doctor is sending me for an MRI - but that probably won't get done until Spring...takes so long!

It is now thought that the fact that I was bullied from the age of four until I graduated from high school (1 girl I just couldn't get away from) didn't help my case either.

My Fibro has gotten progressively worse over the years (each trauma has brought with it new symptoms). While I am still not as bad as most suffering with it, I have extremely bad days sometimes. But we all push through.

I've asked my doctor if there are any research programs that I could give my background and experience with FM to. I really feel like I need to be doing more to bring awareness to this awesome dis-ease!

 

AngieB38 - December 23

I was diagnosed with FM,EBV and chronic fatigue approx 6 years ago. I am 38 years old. I have never had children and never in a really bad accident. I have been in a few but dont recall any whiplash. I had chickenpox in the eighth grade and they were pretty bad and lasted two weeks. I dont ever recall having mono. I do have two cousins and three aunts all on my fathers side that have been diagnosed with FM. I dont recall what my numbers were for the EBV test. That was done by the neurologist that diagnosed me with FM. I am going to see a Rhematologist that specializes in FM on the 30th. I hope he can help me in some way. I get tired of the pain and fatigue but try to keep going. I hope to change professions within the next 6 months and I am a little worried due to the FM. The list goes on and on. Thanks for listening :-) Merry Christmas!!

 

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