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Old 04-29-2010, 07:16 AM   #1
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F150STX HB UserF150STX HB UserF150STX HB UserF150STX HB UserF150STX HB UserF150STX HB User
Epstein barr virus and possible fibromyalgia

For all that haven't seen my previous posts below is a list of my symptoms. I just received results on a most recent blood test showing that I am positive for active Epstein barr virus. My pain management doctor thinks this isn't all of the reason why I'm hurting so bad, but will be treated w prednisone and vitamin D3.

My question what am I to expect after starting prednisone? IF I do have Fibro how will this affect my symptoms and if there is a positive reaction how long until it goes away?

I've had mono once close to 15 years ago and I know the virus will remain in my body forever, but how long could've this Epstein Barr Virus been active. From my understanding this virus is prior to turning into Mono (am I correct). Could it have been active for months? For years? The only new symptom I've experienced within the past 1-2 months is episodes where I'm unable to stay awake throughout the day.

Any feedback is appreciated.

Symptoms: (starting from head to foot)
- Anxiety
- Depression
- Migraines occur 1-2 times per week lasting 4-8 hours. The migraines are progressive and start with a deep aching pain at the base of the neck and travel behind the ear into the temple, behind the eye, and ends at the top of the skull.
- CONSTANT deep dull aching pain between the shoulder blades & spine that radiates into the shoulder blades and into the top of the shoulders. (Have had for 3+ years).
- Intense burning pain that travels along the perimeter of both shoulder blades.
- Deep dull aching pain primarily in my forearms, wrists/fingers, but sometimes in my biceps.
- CONSTANT mixture of deep dull & sharp stabbing pain in the low back/hip area (apprx 2-3" from the spine right above BOTH hips). (Have had for 1+ year).
- Intense burning pain that radiates into both buttocks cheeks, but sometimes will go further into the left leg.
- Deep dull aching pain in the tailbone.
- Sporadic sciatic-like pain in the left leg.
- Deep dull aching pain in both legs (primarily left thigh, but some times right thigh; knees; calves; ankles). If after sitting for awhile I'll have jabbing electrifying pains in my knees and ankles.
- Sporadically it'll feel like my right side of my lower-back, side, & stomach is on fire if something touches the area; when bathing it feels like my wash cloth is sand paper to my chest.
- Moderate to severe muscle / joint stiffness in the morning
- Pain is worse in the morning (until 11-12) & then worsens in the evening (around 4-5).
- SEVERE fatigue even after sleeping 4-8 hours. (Was prescribed Nuvigil 250 mg, because unable to stay awake during the day. The med helps but at times I have episodes where I have to fight to keep my eyes open).
- Forgetfulness (well not sure if that's a symptom or if it's just me .. lol)
- When talking I can't seem to "find the right word to say" (my wife hates it because sometimes it takes me awhile to finish my sentences / thought)
- Numbness / Tingling in my left foot and toes as well as in my left hand and fingers.
- When standing (after sitting or crouching) I'll have a really bad head rush
- Uncontrollable twitches / jerks in both arms and legs during the day & while sleeping. Any increase in activity causes an increase in the number and severity of twitches I have.
- HORRIBLE nasal allergies & dry eyes (not sure if these are applicable).
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Old 07-11-2010, 09:15 PM   #2
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Re: Epstein barr virus and possible fibromyalgia

F150
Your post was a while ago, but I just read it and it sounds almost like you have lyme disease. have you checked into that?

 
Old 08-19-2011, 07:32 PM   #3
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FastUno HB UserFastUno HB User
Re: Epstein barr virus and possible fibromyalgia

I concur, you MOST LIKELY have Lyme disease. Do plenty of reading for days. Watch a movie called "Under Our Skin."

Please be aware that there are many false negatives for the lyme test, so if it comes out negative it does not necessarily mean that you don't have it.

 
Old 10-12-2011, 01:37 PM   #4
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Re: Epstein barr virus and possible fibromyalgia

I don't know where to begin - I'm so glad I found your post!! When reading thru your symptoms, I was saying yep, yep - but when you said "forgetfulness" & "not being able to find the right word" I cried. Thats me!! I have the migraines, the tingleing & numbness of limbs, the fatigue, the depression, the problems with standing, the severe muscle pain, twitching & tremors & it is worse upon awakening & then when early evening hits. But no one has been able to understand my mental "fogginess". My family & kids get angry with me because it takes me forever to spit out what I'm trying to say. I feel the word on the end of tongue, but can't speak it. My girls finish most of my sentences for me because of this. And if I dont say what I'm thinking as soon as I say it, it's gone & I cant remember. I've had conversations with my girls that I don't recall having - even tho my cell phone shows the call. I feel like I'm slowly dying & losing my mind. My mother keeps pushing for a psych eval (she's in medicine) & telling me I'm crazy & need help. They've diagnosed me with a congenital fusion of c-spine 5-7, a herniated disc above the fusion & a congenital narrowing of my cord sac, bone spurs - all putting pressure on my nerves. So I've been to nuerologists, nuerosurgeons, spine ortho docs, you name it. They all just pass me from one to another. I have been suffering from neck pain & migraines since a car accident in 1990 in which they now believe spurred my neck problems into deterioration. But Feb of this year is when I went downhill fast.I'm no longer able to work as I don;t the muscle strength to keep hold of objects & I have no neck mobility - so no driving. But your post has truly make me second guess these so called specialists. Because maybe 7-8 years ago I was diagnosed with mono. then my health as far as my alergies & asthsma started deteriorating. I've been hospitalized so many times over the last few years for pnuemonia, anemia, asthsma. My gp keeps telling me I simply do not have a working immune system. Since he didnt seem worried I just let it go. But in 2007 I was diagnosed with Epsein-Barr virus. I was treated (different gp) & my liver enzymes were closely monitored. But then that gp got sick & I went back to my childhood gp who delivered my girls. No one ever seemed to concerned about the virus so I wasn't worried. But my docs because of loss of motor skills & functioning, the lightheadedness & dizziness & passing out & brain farts as I call them, started throwing around phrases like MS, atypical seizures, mini-strokes & so on. I'm not getting answers anywhere & no one seems to be in a hurry to help. So I've been researching everything under the sun that it could be, determined to find answers. Everything I've stumbled upon with my symptoms always showed the Epstein-Barr virus as a connection (although sience says they don't yet know how it's related, just that it is). So now that I've seen your post & can so relate to you more than anyone I've ever met, I'm going to demand new bloodwork - to check liver enzymes, the EB virus & for lyme disease (as others suggested that may be it). It's scary to find out through this board what the virus is & to know it was never properly explained to me & always brushed aside. Please know there is someone out there with your exact same symptoms, feeling exactly how youre feeling & we aren't crazy!! Tell your family that it is medical, you can't help the fogginess or forgetfullness! I understand - I'm not an intelligent woman. I've was on the honor roll all thru HS, went to college, went totech school to become a hair stylist (my dream job - it's the creativness that called to me) & now I feel like an idiot everyday, I don't hardly ever leave the house for fear I'll be engaged in conversation & make a fool of myself. I can't be on my feet for long periods of time anyway & can't use my hands a lot. But I keep telling myself all those things I told you - I try to keep the "stupid" feeling away as best as I can. Just please know youre not alone & I'm determined to figure this out & fight it. I'll keep in touch & let you know if I make any progress or get any new news. I hope you'll do the same! Please be well & take care of yourself!
Heather

 
Old 10-12-2011, 04:30 PM   #5
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sleepytee HB Usersleepytee HB User
Re: Epstein barr virus and possible fibromyalgia

Heather, Fast Uno & F150,
Do you also have low BP and heart palpitations? This sometimes goes along with it all. Note: If you do go into psych ward...when you fill out the paper for "personality test" and you say "yes" to the questions of "do you spend a lot of time trying to find out what is wrong with you".... Say "no" or you will be labeled a "hypochondriac"...... I told the doctor, "well, I communicate nightly with many other hypochondriacs also".... This is very prevelant, many people have it. I have Lymes, Fibromyalgia, Chronic Fatigue Syndrome, PVC, Hypothyroidism.... Good Luck!
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Wishing you all lots of good days....in a row.
Tammy in SC

 
Old 10-12-2011, 09:34 PM   #6
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lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
Re: Epstein barr virus and possible fibromyalgia

Hi All:
I have been through it all also. Mine started with some kind of a bug (not sure if it was viral or bacterial) just sick with cough, cold, etc. My dr put me on an antibiotic at the time. 6 years later I am still not the same. Better is some ways but other things have evolved later on. I now suffer with (for the past 2 1/2 yrs) tingling on the top of my head, balance issues (not falling, just feeling off. I feel like i need go hold on to things sometimes when I am walking) also tenderness on my scalp bones. ALso digestive and stomach problems. Also some bone pain on the inner elbow pain. Both of them to the touch. Oh and i forgot, severe neck pain. Does anybody have any of these. I have been to every dr under the son. Especially for the tingling on the top of head. Nobody has any answers. We are all just looking for a diagnosis. We need that to move on. We need know so that we can treat the problem correctly or at least accept what we have. We just need to know. Good luck to everybody. Hope to get some feedback. Thanks. LaLa Ps. Been tested for lyme from Igenix. 2 bands positive and 2 indeterminate. It was not considered a positive result. Also 3 different rheumys thinking fibro. They said i did not have all the tender points. So that was ruled out in their opinion, etc, etc.

 
Old 10-14-2011, 11:16 PM   #7
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Re: Epstein barr virus and possible fibromyalgia

Tammy,
I actually now have high blood pressure,a very abnormally high heart rate ( always freaks the new docs out! LOL!). But I do have the palpatations. It's odd & scary, but theyve done EKGs & they say "it's normal for someone with your hearrate" - yeah, that makes me feel better - NOT! but whatcha gonna do?? And I'mcontinuously being called a hypochondriac!! My moms a spine ortho PA & she gets mad when I tell her of my research. I just tell her we keep each other sane!! LOL!
Lots of hugs,Heather

 
Old 10-15-2011, 10:14 AM   #8
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sleepytee HB Usersleepytee HB User
Re: Epstein barr virus and possible fibromyalgia

Quote:
Originally Posted by heatherhobbie77 View Post
Tammy,
I actually now have high blood pressure,a very abnormally high heart rate ( always freaks the new docs out! LOL!). But I do have the palpatations. It's odd & scary, but theyve done EKGs & they say "it's normal for someone with your hearrate" - yeah, that makes me feel better - NOT! but whatcha gonna do?? And I'mcontinuously being called a hypochondriac!! My moms a spine ortho PA & she gets mad when I tell her of my research. I just tell her we keep each other sane!! LOL!
Lots of hugs,Heather
Heather, I have learned more "clues" from other people and the research I do on the net than I have from any doctor! Tell her we are going to find a answer, little by little. Get her to help you get tests done, like ordering a stool test for parasites, and blood work for Lymes/Epstein Barr, and a blood test for this new virus mentioned. I looked it up, only 2 labs do it, but only if Docs order it. It seems we are a little validated when there's a "word" for some of it. Good Luck
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Wishing you all lots of good days....in a row.
Tammy in SC

 
Old 10-16-2011, 08:51 PM   #9
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Re: Epstein barr virus and possible fibromyalgia

Tammy,
good to hear from you again! you're dead on about this board & our own research - I have learned so much in just a week already!! I think a couple ladies, whom I consider friends, have seriously saved my life!! I feel armed & ready to see my doc on the 31th!! My mother refuses to help or understand. she tells me that unfortunately "patients like me" are treated as crazy and/or drug addicts. she said it wasn't neccisarily right, but that thats the way it is. But i will get new tests done - especially the bloodwork!!! I'll let you kno what I find out! I'm just so thankful for this website that has brought us all together & has let us bond over our illnesses - have a place to turn where people really do care & understand!! Basically a support group & I'm thankful for everyone I talk to!! Take care & talk to you soon!!
Heather

 
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Old 04-01-2012, 12:51 PM   #10
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Re: Epstein barr virus and possible fibromyalgia

I know the threads in the post are out of date, but I would encourage all of your to get an ASO titer lab. It's a shot in the dark, but if it's not been done yet, pursue that. It detects recent strep infections...which you may be thinking, "I've not had strep throat recently" but its got a lot of the symptoms y'all are describing, and is yet another commonality like EBV with Chronic Fatigue Syndrome and Fibromyalgia diagnosed people. It's a shot in the dark, but what's the harm in doing yet another lab?

 
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Old 08-17-2012, 11:08 AM   #11
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Re: Epstein barr virus and possible fibromyalgia

I don't know if you have any other options exept prednisone . Talk to your doctor. My husband's bloodwork showed he had active EBV plus Coxsackie, both deplete your immune system and steroids/prednisone will suppress your immune system even more. He was given prednisone and felt better for about 1 week, once he was off prednisone the symptoms came back even more severe causing him to be bedridden for a month.
It was just something I would not wish on my worst enemy.

 
Old 10-21-2012, 01:35 PM   #12
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hairguru HB User
Re: Epstein barr virus and possible fibromyalgia

This sounds exactly like me......right down to which leg. Please let me know if anyone has found a treatment that works.

 
Old 10-21-2012, 01:41 PM   #13
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hairguru HB User
Re: Epstein barr virus and possible fibromyalgia

I have these same EXACT symptoms.....have you ever found a treatment. I can't believe I found someone that actually has identical symptoms.




Quote:
Originally Posted by F150STX View Post
For all that haven't seen my previous posts below is a list of my symptoms. I just received results on a most recent blood test showing that I am positive for active Epstein barr virus. My pain management doctor thinks this isn't all of the reason why I'm hurting so bad, but will be treated w prednisone and vitamin D3.

My question what am I to expect after starting prednisone? IF I do have Fibro how will this affect my symptoms and if there is a positive reaction how long until it goes away?

I've had mono once close to 15 years ago and I know the virus will remain in my body forever, but how long could've this Epstein Barr Virus been active. From my understanding this virus is prior to turning into Mono (am I correct). Could it have been active for months? For years? The only new symptom I've experienced within the past 1-2 months is episodes where I'm unable to stay awake throughout the day.

Any feedback is appreciated.

Symptoms: (starting from head to foot)
- Anxiety
- Depression
- Migraines occur 1-2 times per week lasting 4-8 hours. The migraines are progressive and start with a deep aching pain at the base of the neck and travel behind the ear into the temple, behind the eye, and ends at the top of the skull.
- CONSTANT deep dull aching pain between the shoulder blades & spine that radiates into the shoulder blades and into the top of the shoulders. (Have had for 3+ years).
- Intense burning pain that travels along the perimeter of both shoulder blades.
- Deep dull aching pain primarily in my forearms, wrists/fingers, but sometimes in my biceps.
- CONSTANT mixture of deep dull & sharp stabbing pain in the low back/hip area (apprx 2-3" from the spine right above BOTH hips). (Have had for 1+ year).
- Intense burning pain that radiates into both buttocks cheeks, but sometimes will go further into the left leg.
- Deep dull aching pain in the tailbone.
- Sporadic sciatic-like pain in the left leg.
- Deep dull aching pain in both legs (primarily left thigh, but some times right thigh; knees; calves; ankles). If after sitting for awhile I'll have jabbing electrifying pains in my knees and ankles.
- Sporadically it'll feel like my right side of my lower-back, side, & stomach is on fire if something touches the area; when bathing it feels like my wash cloth is sand paper to my chest.
- Moderate to severe muscle / joint stiffness in the morning
- Pain is worse in the morning (until 11-12) & then worsens in the evening (around 4-5).
- SEVERE fatigue even after sleeping 4-8 hours. (Was prescribed Nuvigil 250 mg, because unable to stay awake during the day. The med helps but at times I have episodes where I have to fight to keep my eyes open).
- Forgetfulness (well not sure if that's a symptom or if it's just me .. lol)
- When talking I can't seem to "find the right word to say" (my wife hates it because sometimes it takes me awhile to finish my sentences / thought)
- Numbness / Tingling in my left foot and toes as well as in my left hand and fingers.
- When standing (after sitting or crouching) I'll have a really bad head rush
- Uncontrollable twitches / jerks in both arms and legs during the day & while sleeping. Any increase in activity causes an increase in the number and severity of twitches I have.
- HORRIBLE nasal allergies & dry eyes (not sure if these are applicable).

 
Old 10-21-2012, 09:04 PM   #14
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Gennel HB UserGennel HB User
Re: Epstein barr virus and possible fibromyalgia

Just wanted to give an update on my husband. After suffering since May of this year. Several things were found in the beginning that did not give us answers because he continued with worse symptoms.
He has Coxsackie b virus, EBV. Then his lymph nodes were biopsied and
It took a month to get a definite answer. He had KIKUCHI FUJIMOTO DISEASE.
It also attacks your immune system. It attacks lymph nodes and cause them to swell. It takes 4-7 months to get over this.
I started him on b-12, D3, immune boost pills and selenium.
I'm very happy to say that his new bloodwork came back normal!
His white blood count is way up and normal.
A miracle is what I witnessed.

 
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Old 02-07-2013, 08:59 AM   #15
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Blah49 HB UserBlah49 HB User
Re: Epstein barr virus and possible fibromyalgia

Lordy, I hope you got the help you need!

 
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