Fibromyalgia Symptoms HOME

The viral, or post-herpetic, is one of the four common routes to FMS.

Viral route often have a history of flu, mono, EBV, Chronic Fatigue Syndrome. When the swollen glands go down and the symptoms remain, that's FMS.

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Sasha, I had almost exactly the same thing happen to me except the wt loss, allergies and asthma and I had a horrible headache 24/7 for a month. It started with feeling like I had the flu and then proceded from there. I felt terrible for 2 months had a break of 5 months almost symptom free except neck and shoulder pain and fatigue then 2 more months of feeling awful with the addition of a weird rash that my doc said was erythema nordosum. They sent me to a rheumatologist who did thousands of $s of tests to tell me I had EBV recently and had had parvo at 1 time and my sed rate was and still is elevated.

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Yes I think there is a connection with the two, I had EB when I was 17, then after a severe whiplash at 21 I got fibro.

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I had mono at 20 and was fine after that untill i was pregnant with my 2nd child (3 years later)which is when i beleive i developed hypothyroidism and ive read up on the signifigance of hypothyrodism and mono (ebv) and there are many doctors who belive there is a link too those, i beleive studies show that 80 percent of hypothyrodism patients have had mono and then also hypothyrodism is an overlapping illness seen in a large number of patients with fms...so its kinda a circle thing i guess..but also interesting to knwo that once you've had an ebv the virus lays dormant in the throat cells or wherever for the rest of ones life

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I had the exact same experience at 26. I was getting strept throat, rashed, fevers, anxiety (thought I was having a heart-attack), and basically fell asleep for 3 months - Drs. finally said my white blood count was high and spleen was enlarged and I had Epstein Barr, Chronic Fatigue, and possibly FMS...which ended up being diagnosed as FMS down the road indefinitely. But yes, I experienced the EB Virus at full speed and it was horrible. I think that was what opened the FMS for the official long term struggle that I now have of the pain and sheer exhaustion. But, I never have gotten as sick as I was when I first got that EBV....

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Yes, I sure have. I just found out that my titers are 1,574 and they are going to test again in a few weeks. What do they do about that. They have said that I have Epstein Barr but have no sore throats just a lot of tired and no energy and no sleep. The rest of fibro is here with a vengence. I hurt so much I hurt being hurt.

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my ebv titers are over 2000 with a past history of infection . i never got sick with it but dr is blaming my illness on my tests.seing id specialist.im so scared that it wont go away as there calling it cebv

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When I first began my fibromyalgia journey,my Epstein Barr titers were off the charts.I, too, am allergic to many things,and they also thought I had lupus. I do agree there is a connection there.... Good Luck and God Blesss

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We get it just like anyone else Sasha. I also have EBV and Ross River virus too, feel awful for a while but you will recover, you MUST REST as much as possible, I did nothing for four months except watch tv!
Cheers from Oz
Lightspirit

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Yes, I have had Fibromyalgia for the past 7 years and until about a year or so ago, I tested + for Epstein Barr. And it's been chronic fatigue as well. I have barely enough stamina to clean my tiny apt. I think there is definitely a connection for many.

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I had high levels of EBV and was then very shortly after diagnosed with FMS. I was tired and hurting and just couldnt get myself together after the death of a family member that I was very close to. I just got run down with the funeral process and such and when I went back to work I couldnt get it together which started the whole diagnosis road. It took me 13 months of going to several doctors and having every test on the planet, ending with a rheumetologist and the diagnosis.

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Kathy from Sydney - I've just been diagnosed after 20 years of putting up with this b/s. Had skew of blood test and the only thing that came back was high Epstein Barr readings. I was diagnosed 20 years ago with chronic fatigue syndrome. Problem was I was never tired or sleepy - so don't know how they got to that diagnosis.

Just purchased a book called "The Fibromyalgia Handbook - A 7-Step Program to Halt and Even Reverse Fibromyalgia" by Harris H. McIlwain, Md and Debra Fulghum Bruce, Ph.D. Its very interesting reading. I've just done 1 thing suggested and that is the 2 x 20 min warm bath/spa (morning and night). This has helped. The main thing is to exercise - I know it feels like you can't, but it helps. I've got a double-dose, as I suffer from chronic vertigo also, so it makes it hard to push thru pain when you are "spinning out". I did it today - went for 40 min slow walk in the fresh air, and felt better after. Hope this helps - meditation and lymphatic drainage massage are also helping. And prayer@@

Cheers

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I wonder how high were any of your titers for epstein barr, my EPSTEIN-BARR VCA IGG AB are 4.07 when the normal rate is 0.00-0.90 anyone has such high titers.

I am exhausted beyond anything long ago was diagnosed with cronic fatigue but this is beyond that, and I am stiff and sore.

Can anyone share their values

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I feel everyone's pain, literally and figurately. Been dealing with mine for over 12 years. Started after a bad bout of mono at age 28, with prior whiplash injury. Subsequently diagnosed with FMS in 2004. Recently found a nationally-renowned Lyme specialist, and was confirmed to have an advanced case of Lyme disease. Complicating matters was the fact that my EBV titers are off the chart, especially the IgG VCA (over 4000!!!). I like to think after so many specialists I am finally in good hands, but even this guy said the presence of Epstein-Barr will complicate the Lyme treatment. I'll keep you all posted.

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I feel everyone's pain, literally and figurately. Been dealing with mine (chronic soft tissue) for over 12 years. Started after a bad bout of mono at age 28, with prior whiplash injury. Subsequently diagnosed with FMS in 2004. Recently found a nationally-renowned Lyme specialist/internist, and was confirmed to have an advanced case of Lyme disease (was tested negative earlier on the ELISA). Complicating matters was the fact that my EBV titers are off the chart, especially the IgG VCA (over 4000!!!). I like to think after so many specialists I am finally in good hands, but even this guy said the presence of Epstein-Barr will complicate the Lyme treatment. I'll keep you all posted.

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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.

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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.

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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.

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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..

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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.

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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.

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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. :(

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

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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.

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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?

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

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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.

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