Despite the instant negative reaction to the thought of the Herpes virus and the association with sexually transmitted disease, there are a number of different Herpes virus, including those responsible for Chicken Pox, Shingles, and Epstein Barr (mono).
Even the ones with the most negative stereotypes are much more common that people believe. Around 90% of people have been exposed to HSV-1 (oral herpes, or cold sores), and the numbers for genital herpes are pretty close to the same.
Once exposed to any of these viruses they can lie dormant in your body, reactivating at any time, usually as a response to stress.
There are eight herpes viruses known to infect humans. These include the viruses that cause shingles and chickenpox, as well as Epstein Barr (which causes mononucleosis) and Cytomeglovirus. These last two cause symptoms that are very similar to what those with fibromyalgia experience.
So, is there a connection between Fibromyalgia and Herpes?
Given the overlap in symptoms between Fibromyalgia and Epstein Barr, it’s not surprising that researchers would consider a possible connection; I know that I certainly did.
I had mono when I was a junior in High school. I don’t remember much about it other than that I felt tired a lot.
What I do remember was later (over the next couple of decades) that I would have what I referred to as “recurring mono” despite multiple doctors telling me that you can’t get mono more than once (something that has since been severely questioned by many doctors and researchers). My throat would get sore, my lymph nodes would get swollen, I would feel achy (like the flu), and worn out.
This was usually after I’d been running on full steam for several weeks, and I saw it as just my body crashing after I’d pushed it too hard.
Back in 2006 when I was fighting strep infections every couple of weeks I actually managed to get a doctor to test me for Epstein Barr and low and behold I tested positive for an active infection (so much for not being able to get it more than once). Blood work has come a long way in two decades.
Fibromyalgia, to me, feels a lot like those episodes of mono, sometimes even including the swollen glands and low-grade fever that were common with the recurring mono. So, it’s understandable why I might question whether or not there may really be a connection between the two.
In 2015, during my last semester of college I began feeling much worse than normal. I thought that I might have a reactivated occurrence of Epstein Barr, but I wasn’t sure so I went to the doctor.
He tested me for pretty much everything and found that I not only had a reactivated occurrence of Epstein Barr but that I also had cytomegalovirus. He also believed that the high stress load on my body might be causing a case of adrenal fatigue. No wonder I felt like crap.
I started taking the antiviral supplement Monolaurin as well as A-drenal and rested as much as I could (given the class load I had) and by the end of the semester I was starting to feel better.
The symptoms of Epstein Barr (mono)
Mono symptoms include swollen glands, fatigue, fever, lack of appetite, sore throat, weakness, and muscle pain. These aren’t too different from the symptoms of fibromyalgia.
And, the symptoms of cytomegalovirus?
The symptoms of cytomegalovirus are very similar to those of Epstein Barr (mono), with fever, night sweats, fatigue, sore throat, swollen glands, joint and muscle pain, and low appetite.
Research on the connection between fibromyalgia and Epstein Barr
Research regarding the overlap of Fibromyalgia and Epstein Barr goes all the way back to (at least) 1987. Buchwald, Goldenberg, Sullivan, and Komaroff examined 50 patients with Fibromyalgia and tested them for Epstein Barr. The levels of the virus in their systems was not significantly different than those of the healthy and unhealthy controls.
The methods used to diagnose Fibromyalgia, at this time, were much less stringent than the 1990 guidelines called for, and probably more similar to the currently accepted guidelines for diagnosing fibromyalgia.
Two control groups were used for this study, one group containing healthy controls, the other patients who had been diagnosed with at least one chronic illness. A large number of the patients (27%) reported frequent sore throats, as well as many of the other symptoms common to mono, but not common to Fibro.
Testing showed no significant differences in the levels of EBV antibodies between the Fibro group and the health or unhealthy controls.
VCA-IgG indicating that the person has had the virus at some time existed in almost all participants (regardless of group). It’s important to note that many people can have Mono and never show any symptoms. VCA-IgM without EBNA antibodies indicates a recent infection; none of the Fibro patients tested positive for VCA-IgM. EBNA antibodies indicate a past infection; this was found in most participants regardless of group.
Given the results it’s almost impossible to say that Herpes is related to Fibro, or that it isn’t.
Since they tested against healthy (and unhealthy controls) and all showed evidence of past infections, it’s possible that their healthy controls were not as healthy as they thought, that the unhealthy control group may have had overlapping issues that were not diagnosed, and a number of other things, including limitations in the blood tests at that time.
Side Note – one really interesting thing in this study that jumped out at me was that even back in 1987 Rheumatologists were reporting that they believed Fibromyalgia patients may make up the largest percentage of their patients.
This is back before the original diagnostic criteria were set, and long before most doctors really even believed Fibromyalgia existed. Evidently, the three doctors involved in this study did believe in Fibromyalgia. Perhaps, Fibro patients sought them out for that reason.
In 2012, Hedberg reported that latent Epstein Barr virus has been connected to many different auto-immune disorders including MS, Hashimotos thyroiditis, RA, Sjogren’s, Chrons, and a number of others that are often seen as overlapping disorders with Fibromyalgia. He also reported on a genetic mutation found in the blood that allows Epstein Barr to increase and maintain itself, possibly leading to autoimmune issues.
More research has been done regarding Chronic Fatigue Syndrome (CFS); both Epstein Barr and Herpes Virus 6 have been connected to Chronic Fatigue Syndrome; as many as 70% of those diagnosed with Fibromyalgia are also diagnosed with Chronic Fatigue Syndrome, and there is much debate as to whether Fibro and CFS may be two separate entities or two ends of the same spectrum.
Of course, all of that brings us to the recent findings of Dr.’s Duffy and Pridgen at the University of Alabama (Roll Tide!). They have been researching the possibilities of treating Fibromyalgia, chronic pain, and irritable bowel syndrome using a combination of anti-virals usually used to treat HSV-1 (cold sores).
They stumbled upon this potential treatment almost accidentally after realizing that a large percentage of his IBS patients had latent herpes viruses and responded well to an antiviral used to treat herpes.
In 2017, Dr. Pridgen and his team completed a clinical trial with 143 fibromyalgia patients, testing them on a combination therapy of an antiviral typically used to treat herpes and Celoxicab, an anti-inflammatory with antiviral properties. The patients treated with the drug combination showed significantly higher symptom improvement than those treated with a placebo.
This research is really exciting and I think could potentially lead to something that could help those of us with fibromyalgia.
I’d love to see more research into the potential connection of herpes viruses and fibromyalgia. I think it’s been largely ignored because there is such a large percentage of the population that have been infected with these viruses at some point. There’s also been a long-held belief that a dormant herpes virus can’t be re-activated. I believe the theory that says that a stressor activates a dormant infection causes fibromyalgia is likely correct, I just hope that one day they can prove it and provide the treatment that will help us all.
Have you ever had mono? Do you have #fibro? There may be a connection Share on XBe sure to check out the update on Dr. Pridgen’s research over at FedUpWithFatigue
Related Posts:
- Symptoms & Signs of Fibromyalgia
- The fibromyalgia treatments that have helped me most
- What Causes Fibromyalgia?
References:
Kelby says
Thanks for sharing this research! Your story sounds so similar to mine! Going to be checking out more of your blogs 🙂
Valerie Purcell says
This is amazing & makes SO MUCH SENSE! I was diagnosed with Fibro in 1992 when my 2nd child was about to turn 1 yo. The rheumatologist was ‘dismayed’ that I wanted to wait til she was done breastfeeding before starting on whatever anti-depressant was popular back in those days. Prior to that I had had severe chicken pox as a young kid, constantly sick with everything that went around & in high school I had 5 1/2 wks of mono w/spleen & liver involvement.I had to have blood levels taken every Sat for cpl mos after I was back to school. I have always suffered from various forms of herpes my whole life. It seems like I passed that on to my own daughters: my poor oldest one has nearly constant canker sores throughout her entire nose/mouth/throat, and she had chicken pox 3 times as a kid & mono her first semester of college. She is still sick all the time. I am convinced she has Fibro. We both comment on how we’ve NEVER been the same since mono!
I used to wonder about a connection between the mono & Fibro, but I have pretty much given up any hope of knowing anything about Fibro for the past couple decades. (I gave up on Drs). It wasn’t until a Dr put me on Cymbalta for depression & we moved to the central TX climate, that the constant aches/pain have predominately all but gone! I can’t predict the weather any longer. But I continued to struggle w/the darn herpes-related symptoms. Then about 10 yrs ago I discovered L-Lysine. I had read that it could help with canker sores. I started out with recommended dose. It helped! But as the sores would return, I’d increase a 1/2 tab once a day. Now, I’m currently up to 3,500 mg in both the am & pm. I rarely get a sore, the returning mono-type bouts are gone, and surprisingly I don’t even get sick at all very often now.
I don’t normally try to pass on any kind of medical advice or promote any particular item, but the simple addition of adding a cheap vitamin I can get at any store, has changed my life so much that I felt it was warranted to share just on the off-chance it could help even one other sufferer. It took a bit of time to “build up” in my system, so you have to stick with it & not get discouraged too soon.
As a kind of personal post script, I will now be weaned off Cymbalta (I have been diagnosed w/Bi-Polar Depression II, and will have to be going on a more ‘intense’ type of Rx), so I am worried about the Fibro pain returning. The 1st rheumatologist had said, “but at least it’s not degenerative like arthritis,” which is why my entire neck & back took another 30 yrs to be found w/arthritis, needing surgeries, and causing so much pain I can barely stand for 20 mins (& exercising is all but out of the equation): I’m already in constant pain. And of course, there is nothing that helps the brain fog, aphasia & that horrible fatigue that are progressively worsening. In fact, many of the other 10 Rx’s I’m on make the most interfering symptoms of Fibro worse. But at least I am currently “winning” my herpes war!
THANK YOU for all your informative posts. If it weren’t for you, I never would have known all the different ways Fibro is affecting me. I feel at peace now with the Fibro diagnosis of long-ago. It doesn’t cure it, but it helps me to stop trying to get that illusive big diagnosis I thought I needed to explain all these other symptoms! Since 1991, I thought Fibro was only the pain & fatigue – until you! Blessings!
Julie says
L-lysine is one of my daily supplements as well. It’s a natural antiviral.
Brittany Guffy says
Omg Omg!! Light bulb!!! I was just saying this as i have shingles and also Fibro and RA lots and i feel this completely. I’ve always had strep and mono. I wish for more research on this.
Lisa says
Our stories are very similar. I had mono as a teen after years of strep infections. After being diagnosed with fibro I tested positive for Epstein Barr and HPV-6. I’m in a brain-foggy-flare and or flu so skimmed this but will read in more detail when I can focus. Thank you for posting. It sounds like it should give us hope.
gwendolyn merren garrett says
i am one of pridgen patients i am 83 percent better after 6 yrs of agony with Fibro and a gamet of other illnesses it is as if a miracle has happened i have my life of before Fibro it just takes a car ride and a appt with him and you will be on your way to recovery its worth one more try i had the 4 hour days the walking cane service dog braces everywhere dont touch me braIn fog my 88 yr old mother shopping for me family and friends gone you are worh one more try just do it he is in tuscaloosa i know its a long way but i made it and so have thousands of his patients from all over the world Hugs and Prayers
Julie says
So glad to hear that it’s helped you so much. I really don’t doubt it. Unfortunately, the treatment isn’t one that I can take because I can’t take NSAIDs, but I agree it’s worth a try if you can.
Donna Santoru says
Hello Julie,
i was recently diagnosed with Fibromyalgia after being treated with chrones disease for 16 years , i finally changed my doctor and i have a diagnosis, but i dont know much about the disease so i have been looking into it and have most of the symptoms , and reading all the things that were posted on your site it make so much sense , i though back to when i was about 16 and was diagnosed with mono and ebstein bar , i completely forgot i had it , as well as i am constantly getting fever sores. the worst part is all these years my doctor kept looking at me like i was crazy ,
Thank you for having this site it is very informative
Julie says
Donna, I’m glad I could help a bit. Are they now saying you don’t have crohn’s or that you have Fibro on top of it (which wouldn’t be surprising).
Lupus Illness Dona says
It is not meaningful. arthritis in knee Dona
Bonnie M. says
Hi Julie!
I am 43 and a mother of four children.
I was diagnosed with Fibromyalgia back in 2001. I suffer with almost all of the documented symptoms. The worst is chronic back pain. I have been thru many tests with many having normal results. This year however is starting to show osteoarthritis which is so upsetting. I have been searching the internet in trying to come up with any possible illnesses that could have caused this. I keep coming across research articles referencing herpes viruses. I remember having chickenpox and had parvovirus in 2002. I also had roseola as a baby. I always felt that my symptoms were exasperated since having parvovirus. I just happened to come across this posting and I would love to chat with you! I even thought that common viruses that my children have had could have started the reaction. Its so frustrating.
Julie says
I wouldn’t be too upset by osteoarthritis, that’s just normal wear and tear of the bones and joints, something most everyone faces at some point. I don’t know if the herpes connection will prove to be the answer or not for Fibromyalgia, only time will really tell. There have been many theories, but few have really been tested to a point of doing us any good. At this point the herpes connection is still just that – a theory – but at least someone is trying to find some answers, and if the med combo they are trialing proves to actually be helpful for a majority of patients (rather than the usual 30%) then that would be awesome news. I still want to see the actual study out of UA before I get too hopeful.
Melissa says
Your posts are so informative. I think that off label use of meds can come about when doctors and/or patients note the positive impact on a secondary illness.
Regarding chicken pox and cold sores, my GP told me he saw a link. He noticed that patients with a history of cold sores tended to avoid chicken pox altogether or they’d get a very mild case.
How terrific would it be to have another class of drugs to treat (and hopefully reverse) Fibromyalgia?
Julie says
It would be great if this works.