Is Herpes Virus Connected to Fibromyalgia?

Adrienne,

I’m about to start anti virals as a fibro treatment. I’ll let you know if it helps!

Yes, I do. And I too get them at times of stress.

Since I was a teenager I always get cold sores when I am stressed. It makes sense.

I have always had cold sores and have been battling fibro for years! My last big flare up was coupled with a monster cold sore too…..

I have never had cold sores.

But I did have mononucleosis (HHV-4 aka Epstein-Bar), chicken pox and shingles (HHV-3).

I have never had cold sores. However, my father and twin sister have. Neither of them have Fibro but I do. This would be awesome if it is true.

I have gotten cold sores for as long as I can remember. I use to get them just before I got a cold, or just after I had a cold. Now I get them in high stress, which is also when I enter a flare up. Maybe there is a connection, would be interesting to find out.

I use to get cold sores really bad when I was started into puberty, the cold sores were so severe I have scaring on my upper lip from them. Then I didn’t get them for several years and now I get them when I’m under stress and I, too, suffer from Fibro.

i have fibro and have suffered for years with cold sores, so bad that i too have scarring

I haver never had a cold sore but had dates who although did not have one , told me that they did get them. I tested pos for HHV6 Epstein Barr. Was treated by a naturpathic. What is the name of anti virals for herpes1? You bet I am gettting on it. Need a dose. Will order on line. I know there are 2 more drugs and would love their names as well. L Lysine? How much Mg. and how frequently should it be taken. Thanks in advance!

I have never had cold sores, but did contract the embarrassing one. Interesting because I have been wondering for the last 6 months whether this virus could have anything to do with my FMS. Searched for a study but didn’t find one until this. They could be on to something. Thanks for the info!

I’ve had fibromyalgia for almost 5 years now and I’ve never had a cold sore. I could see the virus being a trigger (just as any other illness, stressful life event, or many other factors can set it off) but not sure if it’s true for every FM sufferer. HOWEVER, I did have shingles and that is a herpes strain. I got that about 3 years into having fibro.

As an odd coincidence, I just got a new cold sore in the last few days. I’ve always gotten monster sized ones on the corners of my mouth 3-4 times a year as long as I can remember. And, I’ve always timed the onset of my fibromyalgia with the worst case of the flu that I’ve ever experienced some 10 years ago. I felt like I never recovered from it, and in fact, I never did. This cold sore/ viral theory sounds very solid. Please keep us up to date!

Wow! I have had shingles and always wondered if it was that virus lurking in my body that is causing me so many issues. Joint pian, fatigue, sharp prickling pain, headaches, stomach pain, etc. Most recently I have been getting coldsores and am shocked to read about this possible connection. I haven’t noticed too much relef from Valtrex but am definitely going to try Lysine in hopes that it will prevent any future outbreaks.

I have never had cold sores and I have ME/CFS/FM. I have been sick since 1985. Both of my daughter’s also have been told they have CFS/FM. One get’s cold sores and the other doesn’t. The one that was told she had Fibro get’s them alot…the one that was told she has CFS get’s them but not as bad. This is really interesting. I would like to try the L-Lysine but don’t know how much to take ????

I have never had cold sores however, I did have the 5th disease as a child and hepatitis. Both which others have said they experienced before they got fibro.

Very interesting theory, I’ve had fibro 25 years now & never in my life had cold sores, but my father continually suffered w/them ever since I can remember. I’m not educated on the forms of transmission but it does have me wondering, also if there is a genetic factor that makes me more vulnerable.

So far this is the ONLY symptoms I dont’ have with fibro. Never had a cold sore in 62 years!! I do get sores in my mouth though from celiac…

I’ve never gotten cold sores and I am 63 years old. What I am connecting mine to is Epstein Bar virus, if anything. Also, I have Lupus and RA so I often wonder if an auto-immune function might be involved.

I have gotten cold sores all my life, and in recent years have used l-lysine at the first sign. I was dx with fibro about 15 years ago. This is interesting. I am wondering what dosage you take of lysine on a daily basis.

Yes i do get cold sores often when i get stressed and a fibro flare upalways follows lasting for weeks

I do not carry the herpes virus & I have been suffering the symptoms of Fibromyalgia and CFS for four years! I was diagnosed with it last year.
I am on Lyrica but ,although it helped at first, I’m back to square one now!!
I feel so ill and helpless!!

i have had cold sores as long as i remember. when i was in high school i had them on my upper lip and i was so sick. i too have scarring from them. and here i thought i was the only one…..

i might try l-lysine. if it helps adrienne, might help me too. thanks.

I too get cold sores. I have also had mono twice and sometimes think that mono is what’s flaring up. I do use ly-sine when I have cold sores.

I have had cold sores as long as I can remember. I had begun taking L-Line 500 mg daily approximately 4 months ago. I had also changed jobs to decrease stress so I am not sure if it was the L-Lysine, but I am definitely interested in more research in this area.

15 years of Fibro, never a cold sore, no other like virus. Father and sister both suffer frequent cold sores- connection? Seems tenuous but there you have it

I was diagnosed with Fibro in 2000. Have never had cold sores. I had the usual kid stuff: measels, German measels, chicken pox and Hepatitis A.
It’s an interesting avenue to explore. I’ll be interested in the results.

I did have Adult Shingles and now have Fibromyalgia….the pain I am experiencing now is on the tops of my feet and my hands and constant pain throughout my back….also a feeling of fullness in my ears but there is no build-up of wax or infection….and constant neck pain. I try to nap whenever I have spare time to regenerate my body….it alleviates some of the pain and I take Advil or Aleve if the pain becomes unbearable.
Presently, I do not take prescription medicine as it became too addictive…..was using sleeping pils but they left me feely too groggy throughout the day so I am trying to exercise more, eat better and get more sleep….some days are better than others.

I’ve had fibro for 25 years and never had a cold sore.

That cold sore theory is interesting because I have never had a cold sore.

The for your post. Interesting article. I take Valtex therapeutically to prevent my frequent shingles outbreaks. I wonder if there is a way to knock out the virus r will it remain dormant?

The Herpes group pathogen emerging as a potential candidate for being a major element associated with CFS/MS is Human Herpes Virus 6, HHV-6. However, it has more to do where the virus ends up in an active state that is the problem, namely neurons, which the immune system cannot tackle, leading to a chronic stalemate between pathogen and immune system. In my case, one tonsillectomy exposed nerves endings in my throat, I was exposed to another person with a respiratory infection, HHV-6 is commonly found in saliva, therefore an open door for HHV-6 to penetrate what would otherwise be a blocked entrance.

Now that antiviral drugs have become available to penetrate such cells, namely Valganciclovir and Foscavir, and block the viral replication process, albeit taking six months of constant treatment, some are making excellent recoveries. This suggests that some cases of CFS/ME are caused by Human Herpes Virus 6 gaining access to an area where it can cause infection, but avoid an immune attack therefore, immune therapy will not help, but antiviral drugs can, provided that they can reach and penetrate the infected cells.

I’ve never had cold sores but I have had canker sores. Thank heavens I haven’t had a canker sore for about 10 years as I take 20mg of omeprazole 2x per day. I also had chickern pox when I was about 8 years old. However I do not believe that this illness has caused me to get fibromyalgia as I contracted fibromyalgia much later on in life when I was in the military. I had been exposed to toxic chemicals. I also do not believe that canker sores are related either.

Adrienne, I believe there is a strong possibility that the herpes virus is involved in fibro. and chronic fatigue. I have had severe bouts of fever blisters from early childhood and on through adulthood. Lysine has been very beneficial for me. Hope something positive comes from this study.

I have taken antiviral as a preventative for years now and fatigue, flu like symptoms are greatly reduced. I had recurrent outbreaks and felt as ill each time as the first time. Some people don’t seem to feel ill with herpes, but I always did. Could thing to pursue, as research or to try.

I’ve never had cold sores but have had fibro symptoms for many more years that it was diagnosed. The research will be interesting but there are a number of different herpes virus strains. They should be able to do blood work to see if you have any of them floating around. Hopefully they will look at more than just people with herpes simplex I. My husband gets cold sores and has used an antiviral over the last few years to decrease the outbreaks. He does not have fibro. So, there is no obvious 1:1 correlation.

I have had symptoms of fibromyalgia/chronic fatigue for 8 years. Finally I found a doctor who also had it but, through personal research, discovered a connection between the disease and excessively high viral loads. I was carrying excessively high numbers of Cytomegalovirus, Parvovirus, and Epstein-Barr virus and was placed on the antiviral Acyclovir which helped tremendously. Still looking for more support, I turned to holistic medicine. For me, the addition of two supplements, X-FLM and X-Viromin, have been exceptionally helpful. These are supplements contain vitamins, minerals and various extracts such as green tea, reservatrol, grape seed and licorice. Juliet age 66

I have never had cold sores but have fibro. I play a brass instrument and some get cold sores from the mouthpieces but so far I have been fine. I’m interested to know though if the Lysine mentioned is related to the ibuprofen lysine in neurofen migraine tablets? They use lysine in those as it is absorbed quicker so gets rid of the headache quicker. I have been taking these regularly for a few months as anti-inflamatories seem to work better on my hip pain than other pain killers (doc still says it is fibro but as fibro is non-infamatory I have my doubts!). I have been doing fairly well lately so maybe the ibuprofen lysine is why?

Hi, I have never had cold sores. Have always had allergic rhinitis (hay fever, but all year round and not necessarily due to pollen and/or cut grass in the summer)

Was diagnosed with Fibro/ME in 2006 but symptoms were in place for many years before that. The big flare up came about in 2001, extremely long and bad divorce, fell and cracked my coccyx twice in 6 weeks and then Bornholms Disease also called Devil’s Grip, which can mimic heart attack, and other painful stuff.

Others with fibro seem to have a similar history.

My view is that overwhelm is the cause of fibro. That is the mind is overwhelmed by stress, the body is overwhelmed by compromised immune system either by allergies or stress, and then you come into contact with something really nasty. Altogether it brings you to your knees.

If this works it would be great, but I think a war on several fronts needs to be mounted. I will keep my fingers crossed though !

Wow! This is very interesting! I have been getting canker sores for years and my Dr told me it was a herpes simplex caused by stress. I use an ointment to help them heal and have noticed for the past 2 yrs I was getting them more frequently and 3-4 at a time! I was diagnosed with fibromyalgia June 2011. I hope this will be a breakthrough as this seems to be progressing very quickly. My weekends are spent recovering from my workweek. I no longer have a social life because I have no energy for anything else.

I have had CFS for 5 years. I tried an antiviral for a month (Valtrex) a year or two ago and it didn’t do anything for me. I’ve had cold sores all my life, most of the population carries the cold sore virus. I take lysine and use a lip balm with lysine in it when I get a sore, which is about once a year. I’ve been taking vitamin D3 for a couple of years and I have been getting fewer sores, and fewer colds!

Have had cold sores since a little girl, and violent migraines with vomiting. Then mono, IBS and joint pain as a teen. Was diagnosed with fibro in mid-twenties after thinking I was dying the pain and fatigue, headaches,IBS so bad. Started using L-Lysine 500mg 3 times a day upon first tingle and for two weeks. Used to work great, sometimes didnt stop it but sores healed faster. Over the next 20 years got so frequent had to go on Acyclovir 400mg 3xday for 5 days at first tingle. Dont always catch in time but does heal faster. I have read that your body needs a break from lysine and not to take it for too long at a time. I found the cold sores were worse from chapped lips (winter), sunburn (summer), stress, and the week before my period

I know people are desperate to feel better, I certainly am. Things that have helped me:
- vitamin D3 5000 IU daily (deficiency confirmed with a blood test)
- selenium 200 mcg daily (I also have Hashimoto’s and this helped)
- ambien, getting 6-7 hours of sleep at night means I have a few good hours the following morning
- buproprion, an antidepressant that increases dopamine, although I had to stop taking it because it caused insomnia, but it does help with fatigue
- stopped taking an SSRI because it was actually making me more tired. Took about 9 months for my body to find its new equilibrium, but no depression, anxiety or pain despite cessation of the drug
- pacing, I use a kitchen timer to time my activity and rest periods
- keep my heart rate down. If I let it get above the anaerobic level I am much more likely to crash.

Of course, this is anecdotal, it may not work for you at all. I don’t think CFS is one disease, I think there are mutiple causes. That’s probably one reason why it’s so hard to treat.

At least I am relatively pain free, my main symptom is unrelenting fatigue, secondary symptom is insomnia but the sleeping pill takes care of that.

I also get cold sores occasionally and cnaker sores. Has any one else developed a calcium deficiency even if your not a likely canadite for osteoporsis I am 43 thanks

You know it is funny but my husband and I were discussing the possibility of my applying for the study this evening. We live about an hour away so it would not be too difficult a drive. I have both fibro and IBS-C. I have never had a cold sore but had canker sores for years. I drink a lot of hot tea and a friend in the U.K. suggested I put milk in it. She said the acid was causing them. It helped a lot. I rarely get them now. I saw the announcement two days back and started doing some research and they say if you have lots of problems with canker sores you need to be tested for several things and one is herpes virus. I see an entrocrinologist in about a week and a half so I will probably talk to her first. My main question in the whole thing is that I thought they had tested for many viruses in the past and I would think Herpes would be one of “the usual suspects”? I’m not getting my hopes up. I have had it for over 12 years now so even if it turns out to be true it has most likely done at least some permanent damage.

I have fbromyalgia over twenty years, and I never had cold sore or virus.

I’ve never had a cold sore. But had encephalitis from hhv-6. I have cfs and fibro. My friend takes L-Lysine for shingles and SWEARS by it. Iwill start taking it as soon as I can get dressed and get to the store! Can’t hurt!

This doesn’t ring true for me.
I went on the herpes immunization trial when I was younger. I now show antibodies to herpes without having the virus in my system. When I first got Cfs and fm I asked the trial if any other participants were ill and I was the only one. So it’s not the cause for me.

Wow! Very interesting connection. I had shingles (herpes zoster) quite badly, never bounced back and was later diagnosed with CFS / ME. FYI: I found St Johns Wort very effective in treating shingles and I still take it now for my CFS/ME.

I have been diaganosed for 16yrs now with FMS but can go back at least 40yrs with the symtoms. I am 68yrs old only twice had a cold sore 50yrs ago, but I have had both chicken pox and shingles. Due to Kidney stones I also get a lot of Urine infections, I have been told they usually go hand in hand with FMS. So I think there is a lot more to FMS than just cold sores.

Never have had cold sores. As a kid had many canker sores along with many colds. In my late teens I had mono. It is interesting to see how many people here do have cold sores however. Applause this doctor for doing research!

My Dad and my Grandmother (his Mom) had terrible coldsores; they were always huge, from the mouth up to the nostril. I figured that I had inherited them. As a child I had lots of canker sores, then as I got older I had cold sores. My cold sores are always in the same placeI have had fibro for a long long time and ME/CFS since August 4, 2006. Earlier that year I began having sores on my bottom lip on the inside, from one side to the other. They started out white, but then they turned red/purple (like an open sore). Tried so many things, over the counter and from the doctor and dentist. OraJel mouth rinse helped the most. I had them constantly from 2006 until 2010.
Very interesting, would like to try the anti-viral medication.

I’ve been thinking that it is related for a long time now. From what I read it does sound plausible to me. I had chicken pox and my mom had meningitis which I believe come from the same or similar viruses. I want to get tested but i am uncomfortable bringing it up with my doc who doesn’t seem very knowledgeable about how things are linked to each other. She won’t support my disability claim either and just doesn’t understand all the problems I have. She is young so that might be the problem. I am thinking of finding a new doctor. I am glad you brought up this topic as it has been on my mind for a while.

april

I’ve had fibromyalgia and the Herpes virus for many years and have used antivirals off an on during this time. They help with the flu-like feelings that go along with this illness. I’ve used acyclovir and Valtrex. Both are very effective for the swollen lympth nodes that are often very painful. It doesn’t however help with pain or fatigue in my case. I was on suppressive therapy for a couple of years and it didn’t help my fibromyalgia over all. Hope this helps.

Reading many of the comments; I truly feel like the herpes virus could be part of my Fibro illness. I always get mouth sores, or herpes, on my mouth when sick with the flu, and did as a child and teenager. I feel like I have never gotten over the illness, and this feeling gets worse as I age. I am 62, and struggling with all the Fibro weaknesses. I hope this research turns up with something useful for all of us.

Have never had cold sores, but as a teen had lots of painful mouth ulcers. In 1986 as a nursing student I think I was exposed to Epstein/Barr in my lab class. I remember having a horrible sore throat and telling the Dr “just cut off my head” because it hurt so much. Up til then I was very physically strong with alot of stamina- 1987 after finishing school I started working the night shift, poor sleep, hubby who had sleep apnea, 3 teens, lots of bills and had a terrible time getting enough rest. Also, in high school I had many bouts of strep throat, up until 1980. I was diagnosed with Graves in 1982. After 25 years in the nursing profession, I lost my job because I could not keep up with the mental and physical demands. I was told in 1997 I had Fibromyalgia by a specialist. Not once did my regular IM Dr address this Dx. As the stress built up I was given antidepressants, Thyroid meds, etc. I don’t want more pills, I want natural plant based medicinals to help me feel stronger and mentally sharper. My most recent Dx is RA and Autoimmune thyroid disease. As I have lost muscle bulk and tone, since 2009, my back and neck, hands and hips have been my biggest challenge. I really feel there are so many triggers out there, and medical science only wants to deal with the BIG ones- the ones that have proven critical pathways to deal with and make the Dr look like a hero.

This sounds like it could be yet another theory that people hope is “The Answer,” but after a couple of years of study may turn out to be not much. I have CFIDS, not FM, and even though we know HHV6 is involved we don’t know what to do about it. I have had cold sores since childhood, although less frequently in the last few years; my sister has never had cold sores and she has both CFIDS and FM. I suspect some of us are born with immunity to them, as in my father and two sisters, while my mother and myself have had them alot.

Interesting theory but will now give my perception to further confuse. I believe that we as Fibromyalgalites are prone to any viral infection because the Immune System gets so worn down from all of the debilitating symptoms. No wonder that cold sores and cankers are experienced by many including me.

Hmmm. Never had a cold sore but have had 1) Shingles 2) Mono 3) Chicken Pox.. Interesting theory!

I have had Fibro for over 30 years. I have never had a cold sore.

had fibro for over twenty yrs and had cold sores all my life ,they come when stressed ,sick or just run down its possible they have a link to fibro .also do any fibro friends have a problem with very sensitve teeth just wondering if this is a part of fibro too its quite painful at times its unbearable

Cold sores usually two to three times a year and they grow large and very painful if I don’t take Valacyclovir as soon as they begin. Diagnosed with mono twice (I know, the doctors were surprised too) and it was only after contracting that illness that I began experiencing cold sores. This will be very interesting research to follow.

I’ve never had cold sores but ever since I was very young I would get one water blister inside my lower lip when stressed out.I’d open it gently with a sterile accupuncture pin and it was gone by morning.I have had chicken pox,shingles(at 8),mono and Epstein-BarrNow fibromyalgia for 8 years.I too believe that people with fibro just keep getting more and more run down as time goes by and are more prone to getting more ailments.I always say that I feel like a VW on one of those emissions testers at the DMV.You’re up on the treads and the tires are going faster and faster….but you don’t go anywhere.Just wears everything out.

Definitely there is a connection with cold sores and fibro…in my case…I’m 71 of age and never had a cold in my life…..cold sores yes in time of strss and in summer…about 30 years ago a young doctor told me that I had CFS and also warned me about other doctors in non believing in it…One reader said that she felt had a huge attck of flu and never recovered….this its the way I feel all the time…6 years ago I was “officially” diagnosed with FMS and CFS, still I don’t have a cold, have the cold sores and I was tested pos for HHV6 Epstein Barr…where do I go from there…I will try with Ly-sine…life its not a meery go around with me….if the can find a relation between cold sores and both FMS and CFS its a huge step that will enable us to get a better life…good luck to every one

I have been doing some research on l-lysine. I didn’t realize it’s importance. I was trying to give up red meat, chicken, etc. My problem is I didn’t replace the protein I was losing. I bought so l-lysine at the store yesterday and I am going to give it a shot. My symptoms have been getting worse. It takes forever to get into a specialist.
Anyone in Syracuse, NY? Get together, compare notes?

I never got cold sores, but was exposed to Epstein Barr through kissing shortly before beginning fatigue symptoms. Fibro didn’t hit me until about 10 years after that. I would be thrilled if n antiviral worked!! I also had chicken pox as an adult.

I am 64 yrs. old. I had a really bad case of chicken pox at 6 MONTHS old and shingles at age 4 all over the left side of my face. I have nerve damage from it. I have suffered with the pain of F.M. as far back as I can remember, age 3. I have gotten cold sores all my life, especially whenever I was going through any hormonal changes, puberty, pregnancy, hysterectomy, as well as other times of extreme stress or too much time in the sun.Interestingly, I have had 2 cold sores in the last month. If I take Lysine, it triggers a huge flare up for me, so I avoid it. I also had “measles” 4 times in my life. This info from my Mother. I’m sure it was roseola, fifth disease AND measles, etc. I have never had a strong ammune system until the last few years when I’ve been on many vit./min supplements. I have gone the RX route without much success and have switched over to a more holisitc/healing diet method to treat my fibro. It has been the best I’ve felt in years. I have so much more energy, no drug hangovers, no addictions, and a much better quality of life. I see a chiropractor at a wellness clinic and have recieved help, but most of my “treatment” I have figured out for myself by reading everything I could get my hands on and researching on line.
It would not surprize me in the least that these researchers ore “on to something”, but what awful drug will they come up to treat it with?? I would like to see them “get smart” and go with replacing what we are lacking in our bodies that causes these illnesses to trigger in us.

I never had cold sores, but I definitely have fibromyalgia, probably already from childhood but managed to keep it in balance until 5 yrs ago I completely cracked.

For me there is no relation with cold sores whatsoever…

Hi, I have had fibro for 4 years. I have herpes simplex type 2 and take 500mg Valtrex daily and was taking it prior to getting fibro. I was just reading the antiviral they are talking about is different to valtrex so maybe there is a difference there. In the US 20% of the population has hsv2, though 70% of people dont know they have it. I have read that more than 50% of the population has hsv1 (cold sores) so just wondering why everyone doesnt have fibro?? Just for information to those who say they have never had a cold sore, you may have had just one in your life which you didnt even know to be a cold sore, but once in the body it remains there for the rest of your life regardless of if symptoms are ever visible or not. You are also still contagious to others for about a week a year with a natural skin shedding which is also not visible. With all the people we kiss on the cheek in our lives and knowing such a large amount of the population have it and are contagious even invisibly so, you are doing incredibly well if you dont have it, regardless of knowing it or not. So I am sure their maybe many fibro sufferers who think they do not have herpes of any form but actually do. I think this helps the argument that it could be caused by the virus, but makes me wonder why we are still a minority…. have a good day everyone, hugs, Ali xx

Good morning!

I am following this topic from Budapest, Hungary.
I am struggling with CFS/FM like symtoms since 2006.
I find Adrienne’s work and communication very important and useful. Thanks a lot for that Adrienne!

My perspective and observations lead me to suspecting the virus background of CFS/FM due to the following reasons:
- my symptoms suddenly started in April 2006 (after getting a short cold like disease accompanied by feaver)
- 2-3 years after, my wife started to show very similar symptoms.
Now both of us have symptoms. In my case tendons and ligaments are especially affected, in her case muscle pain in various points are dominant. Both of us have the same gastroenterological symptoms while facing stress.

Could somebody, please, describe me what is “cold sores” as my english is not perfect.

Thanks a lot !

I get cold sores when stressed out, or when I have a fever. My finger nails break or peel apart and they get ridges on them also.
Presently I am very tired, lacking strength, having mild to strong migraines and swelling around my neck and shoulders.

I can remember as a young child having fever blisters that were mssive and extremley painful. i was thrilled when I discovered l lysine.
Not only did it nip the fever blisters in the bud before they became full blown but I very seldom get them anymore. I’m going to start taking me one or two q day and see if iit helps my fibromyalgia. To get relief from this pain and fatigue would be a blessing. I can’t imagine how great life would be.

Like commentor #62, I have had mono twice: once in college, undiagnosed and thus lasting for months, and again at 48, severe enough to cause me to retire. I had been diagnosed with fibromyalgia and IBS prior to the second bout. Three months after the second case was diagnosed, I had my first debilitating bout with joint pain. Three years later, a fast-moving polyarthritis destroyed my knees in less than a year. I had them replaced (good choice), but the arthritis, now diagnosed as atypical (non rh-factor positive) rheumatoid arthritis has moved into every joint I have. I’ve always believed that the mono was the root cause of all these illnesses. It would really be nice to know why my health, ability to work, and quality of life have been destroyed. Even nicer would be an effective treatment that would make my remaining years less of a living hell.

My doctor (Charles W. Lapp, MD) who is an ME/CFS/FM expert feels that ME/CFS & Fibro are probably subsets of the same disorder. That’s why there are so many similarities.

Also as I’ve mentioned before, many doctors do not want to give the ME/CFS diagnosis so they ignore that and dignose fibromyalgia when in fact the patient probably has the ME/CFS & Fibro combo.

So if you have Fibro with all the other symtpms of CFS (or many of them), you can expect Herpes is part of your experience and an antiviral may very well help.

I too had good luck with Lysine.

I was hospitalized many years ago from an undetermined illness. My doctor ran every regular test he could find and they came back negative. He then ran more tests and asked results from Mayo, Hopkins etc. On the 5th day of my hospitalization, we found I had an accute attack of pure Epstein-Barr – not mono, but pure Epstein-Barr. I was released 3 days later. I immediately felt the fatigue, pain, mobility problems, IBS – the works during the hospitalization and ever since. Personally, I have no doubt about the connection.

Hello, I also have been diagnosed with the herpes virus and then contracted mono another time. I really thought once you were diagnosed with Mono, you would always test positive for it if tested again. Thats what my family physician said in the late ’80s. Since then the following diagnoses; IBS, hypothyroidism, fibromyalgia, essential tremors, raynauds, and asthma! It would be GREAT to find out more positive trial results on using the anti-virals. I didnt take a formal count, however many on this comments thread seem to have had/do have the herpes virus or Mono, epstein barr viruses. Thanks.

I have fibro and have reoccurring shingles. Had the shingles vaccine in february but continue to have small outbreaks. I too take the antiviral. Recently, I read that coconut oil was an antiviral/antibacterial and I am interested in trying it. My skin is dry as well, so maybe that will improve. Does anyone out there take organic cocconut oil and how much?
I too would be interested in being part of the study for the antiviral.
I have been getting acupuncture and trigger point work done and it’s helping so much

I’ve had Fibro since my teen years (now in my 50′s) and I’ve only had a cold sore once or twice.

Again, I plan to self treat,.Tested pos for HH6 and test was described as concurrent with Epstein Barr.. I have had FMS/CFS/ME/Osteopenia and Ehnlers Danlos. for most of my 56 years, and Lyme for 10 years. After testing neg. twice for Lyme using the Western Blot a local scientist found Lyme in my blood and even showed it to me ,micro Lyme deer ticks eating my body. He treated me, is a Naturpathic Oncologist. He takes cases that have been dismissed from Sloan Kettering and Moffitt Cancer.I Had been camping in remote Penn. found a tick embedded in my left calf. My current symthoms My legs have clumps and other painfull muscle areas that feel like swollen ropes. I squeeze and rub them for releif. There are knots and smaller areas that feel like beads On real bad days my arms go the same route.. The pain is horric. Vicodin does not touch the pain.Nucynta offers some releif as does hot soaking. Also micro doses of cordisone. Muscle relaxers help a little. I need help , been on Lysine for a week. and also use the herb Kratom. If anyone can tell me the names of the antivirals and dose for a 56yr old former athlete, 5’7 140 lbs other wise healthy BP and pulse and bloodwork., Have been on Lyrica, Cymbalta,Nuerotan and a slew of SSRI.’s. have had acupuncture, Chiropractic c1 adjustments. Electro current and allergist. Live in Tampa been to Cal,Or and Texas in addition to local treatment. Saw a local Rhumy rx methadone and Oxy. Doc billed medicare weekly then the office started demanding cash payments and . billed medicare for 31 visits after my final visit. The methadone worked better than anything. Are there online sources of Methadone or maybe best to stay on the Nucenta and add Tramadol for breakthru. I am afraid to ask for Tram or an inrease from the current 300mg Nucenta. Afraid i will be sent back to pain Manangement that just bounce drugs off of you untill it is torture. Contempateing pretending to be a heroin addict to procure Methadone..

I do not get cold sores, but when I’m having a Fibro Flare, if I take 500 mg of Valtrex for 5 to 7 days, it seems to help lesson the attack.

I have had Fibro for 27 years! I am 51 years old and have NEVER had a cold sore. I only had chickenpox at age 5. So perhaps for a subgroup the theory works–but is not absolute. I was diagnosed by numerous rhuematologists and there is no doubt I have fibromyalgia. It will be interesting to see where the research takes them.

In the fall of 1990, I was encouraged to take the flu shot. I did; w/in a few hours had “minor” flu symptoms; aching all over, GI upset, and slight fever. W/in in a day, developed a fever blister which I never had before. Within a month, noticed my energy level was very low. I also had no appetite, was falling asleep by 7 p.m. (I was told this was NOT caused by the flu shot).

I had basic labs, which came back abnormal. Had viral studies among other things. I had acute CMV, a herpes virus, and was told “it would run its course in about 6 weeks”. Also, although I had mono when younger, these viral studies showed that I had never been exposed to EBV.

The aching, extreme fatigue, brain fog, muscle weakness, etc., continued. I was diagnosed with CFS a few months later by a neurologist. I also had a lot of vestibular symptoms with the beginning of CFS, still do to this day.

Several years after the first flu shot, it was recommended that people with immune dysfunction problems take the flu shot so I took it again since I had been told my immune system was not functioning properly. Took the shot, w/in a few hours had flu-like symptoms & this time, w/in hours, developed a huge fever blister. I went back to my doctor just to show him the fever blister and talk to him about my flu-like reactions to both flu shots. He told me “obviously there is something wrong with your immune system so don’t take the flu shot again”. This caused a major flare of my CFS/FM symptoms.

A few years later, I cut my hand, had to have stitches. They gave me a tetanus shot. I developed another flare of CFS.

I know without a doubt that my CFS was caused by CMV, and now, 23 years later, I am disabled (just in the last year) from it and the vestibular problems. I used to take L-Lysine but stopped…this morning I started taking it again after reading that it seems to help some others in comments above.

I hope there are some breakthroughs for us all soon.

All people will hear is “herpes”!

There are many types of “herpes”. Shingles is a herpes virus. Chicken pox is a herpes virus. People need to be informed if they think there is only one kind of herpes.

Oh my! Yes I get cold sore. Have for many, many years. I totally think there is a connection.

I have had chronic herpes since January 1986 – it was first thought to be impetigo/ insect bites/ abscess etc ; because it did not follow usual pattern , ie I have never had a cold sore on my mouth! I started to develop CFS in 2003 diagnosed on 2005. I am now on aciclovir regime for 3 months, as I have been extremely un well for several months. It is a battle to to get GP’s to listen to what you say- I know my own body!

I have had frequent , painful herpes sores on the roof of my mouth. When they flare up. my fibro flares up. I have wondered if one has anything to do with the other. Maybe there are different types of fibro. I believe there is a connection. I got both about the same time. Acyclovar does help. I am going to try the suppliments that have been suggested.

I was diagnosed with FMS at age 19, 12 years ago. I have HSV type 1, confirmed via bloodwork. Approximately 70% of people have HSV1, even if they are asymptomatic. Only blood tests can confirm/deny presence of the virus.

I get cold sores on top of and inside my nose, never on my mouth. They pop up concurrently with FMS flare ups. I took acyclovir for a while and have tried L-lysine, though neither resulted in notable improvements in FMS symptoms but do help the cold sores heal faster.

I have many additional conditions: Allergies (foods, pollens, animals, molds, dust, antibiotics), asthma, anxiety, PTSD (unrelated to FMS), TMJ, carpal tunnel, tendinitis (in arms & feet), frequent UTI/bladder issues, and have had many peculiar viruses.

Connections? Causes? I’m sure there are some. Wish I knew what they were.

Have FM and stomach ulcers with fever blister outbreaks at high stress levels. FM flareups eventually turn into migraines that lead me to Dr to get Toradol shot. I had a fever blister while at dr and asked for something to help stop its progress. Got Zovirax and have been taking it for four days with no FM pain AND no stomach/digestive problems, both of which have been almost constant for months. I also have had success with 500 mg day of lysine in past, but the antiviral drug is helping ALL symptoms.

But, I really wanted to tell everyone about a supplement that has been a miraculous cure for years of inhallent allergy problems. I used to be so allergic to cigarette smoke, dust, and molds, etc. that we even changed our AC ductwork in the house. That was 15 years ago, and I discovered an immune system enhancing herb (andrgraphis paniculata) marketed as Kold Kare (used to be called Kan Jang) and is put out by Kare N Herbs. I havent had allergy problems in 15 years and I rarely have a cold. I take this daily as a maintenance supplement, and if I state to get a sinus drainage I take 2 tablets twice a day for a day or two and it goes away. One caution. I have tried other formulations of andrgraphis paniculata and they didn’t work for me. You can order this fom their website, but it’s hard to find in most health food stores, and is pretty expensive if you do. I hope this helps someone as it changed my quality of life.

suffering from fibromyalgia for atleast 9 years. started valcyclovir 4days back. instant relief from back pain in a day. rest symptoms r improving rapidly. also on duloxatine for 1 &half yrs. tappering it off now. might got the whole thing from chicken pox.

So happy to see this on the internet… I have had chronic pain/fatigue as far back as I can remember… I have thyroid disease and have been plagued with cold sores… Usually broke out under times of stress and even stress from my monthly cycle… I’m 50 now and got shingles… they put me on Famvir and one day I’m walking around and thought… HEY…. WOW… I have no pain and feel like a 20 year old! What an amazing feeling! Started putting the connection together with the anti-viral of Famvir… Started listening to the Lyrica commercials that say it is from over active nerve pain… Shingles is a virus in the nerves… I’m taking an anti-viral for Shingles and now I have no fibro pain… I went back to my doc and was all over it like white on rice… He poo pooed it because it is an off label solution and didn’t think insurance would cover it… I said it was so compelling, I can’t let it go! Talked to my other docs… got one to cover it for two weeks because I had a lingering cold sore… then I got another doc to write script for a year to prevent cold sores… I wanted to lunge at her and kiss her… I was so thrilled to be able to try a maintenance dose daily… Happy to report that I feel like a normal 50 year old now… still have some aches and pains but so so so much better than I have felt in years…. Please keep pushing with your docs to try this… I really am convinced there is something to this connection and it can help so many people…. I know I will be singing to my docs to do my leg of the race… Best to all of you!

I used to get cold sores all the time, due to times of stress and illness, then I had my daughter and after that no cold sores, but my body aches and depression started. Went to many doctors, specialist, and tests, there prognosis was fybro! That was 29years ago and my life has never been the same. I so believe that the cold sore virus is sitting dormant in my nervous system, and due to stress and illness it flares up as fybromalgia! I so hope that this is the theory and they can come up with a cure! Had enough!!!

Yes yes yes absolutely anti virals help
fibromyalgia symptoms. I had felt ill for so many years, I reached a point where I didn’t want to go on. I’d read a dr had used anti virals to cure fibro. I had a repeat prescription for anti virals thankfully as have had herpes outbreaks for about 15 years. Within about 2 weeks I started feelin better. It’s been 3 months now On anti virals and my energy levels have tripled, I can work full time without feeling like death, clean the house without having to recover in bed, my whole life has changed it’s a miracle!!! Drs need to know that fibro is a virus and to not accept the symptoms anymore and anti virals work! I have lost 10 years of my
life to this illness which is so cruel. I’ve now got my life back thank god!

You are onto something: this should be researched. I take 1000 mg L-Lysine 3X’s daily + Valtrex 1 gm daily. Multi-vitamins to level out my estrogen. Figured this out myself/internet. If I keep on track, reduce stress and watch my diet (low alcohol/caffeine/sugar/white flour) no outbreaks or fibromyalgia symptoms!

This recent study has been going on for 10 years, they will soon be marketing it to pharm. co. L-Lysine, maybe Valtrex and a third drug that stops the virus from replacating it’s self, dont know the name . When I do I will post. Judy

I suffer from Fibromyalgia and get frequent severe cold sores/facial herpes. I also get a lot of hand warts so assumed it was due to low immunity. Now I am thinking that maybe the cold sores are directly linked to the fibro……