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Fibromyalgia / CFS Community

This patient support community is for discussions relating to fibromyalgia, Chronic Fatigue Syndrome (CFS), and pain management.
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herpes and fibromyalgia?

by Shanannagins, Jul 17, 2008 12:40AM
Does anyone know if there is any correlation between herpes and fibromyalgia.  I notice that since I have been diagnosed with herpes my other pain (we don't know what it is yet but fibromyalgia and lupus are on the table right now) really started to increase.  And it's not just the pain normally associated with herpes ( pian down the backs of the legs and swolen glands), it is all of my symptoms seemed to have increased since then.  Now that I think about it it was shortly after being dignosed that my pain stopped being and every now and again thing and became a daily struggle.  Any thoughts?
Member Comments (8)

by kitonthemoon, Jul 17, 2008 12:23PM
To: Shannannagins
I'm not sure about the connection,......but Human Herpes Virus 6 A/B are both connected to ME/CFS in some patients, which is not exactly the same as 'herpes' as we know it.  I also am not sure it relates to lower back pain, leg pains as I have them rarely.  

Swollen glands usually indicates infection origion.  I would have my doc test me on HHV-6A /6B and see if you have them.  

Hugs,

by feelingempty, Jul 17, 2008 01:12PM
To: :)
I'd LOVE to know about this too. My dr is really thorough. YET i don't think she's very
knowledgable about Herpes (HSV-2).  Maybe she hasn't had many patients ask for testing.  Since over 20% of ppl have it & MOST don't recognize their symptoms & NEVER get tested.  I just found out i have this also & was SCARED 2 death. BUT after
being educated it's ONLY transmitted thru sex. And I'm NOT sexually active right now.

I ALSO wonder if there is a connection between the virus & HIGH sed rates etc.! Since it IS an infection it would make sense. I'm going back to the specialist for FIBRO in the next 6 months where i plan on writing down ALL my ?'s & hope 2 get some answers. I think i may have had HSV-2 virus for yrs. & am asymptomatic. BUT lord... do i have MAJOR leg weakness, pain etc.! Not to mention the 2 back surgeries i had & all the other disc problems i have it all aggravates it ALL.

God BLESS you all
=)

by PlateletGal, Jul 17, 2008 01:43PM
To: All

My response would be the same as Kit's.... I know that Dr. David Bell just reported some major findings about HHV-6 in CFS/ME patients. I think HHV-6 has also been looked at in MS patients.

I have read that fibro patients are prone to shingles outbreaks.

In my opinion, this is yet another pathogen contributing to our symptoms, etc.

by Shanannagins, Jul 17, 2008 10:48PM
To: all
Thank you all for the insight.  I have never heard of HHV-6 and I am not really sure what CFS/ME is but I am going to look it up right now.
To feelingempty:  let me know what your doc has to say after your appointment.  I have an appointment in a month and if my doc has any insight I will be sure to let you know as well!
The reason I asked this question was because as I read this forum last night I was struck by how many people seem to have some sort of virus that either triggered the onset of their fibro or made their symptoms more acute.
I have a degree in Mortuary Science and through my studies  and work I have found that more and more they are finding that viruses are responsible for many conditions.

by feelingempty, Jul 18, 2008 01:09PM
To: Shanannagins
I will fill ya in on what i find out NEXT Tuesday @ the dr.  It's nice 2 be able to talk about this & know i'm NOT the only one w/ so many ailments. I thought i was going to jump off a bridge when i got my HSV-2 results. BUT reading on the net that it's NOT passed to ppl very easily. ONLY thru sex; was SUCH a relief.  And 2 read that 60% of ppl have HSV-1 didn't make me feel like such a freak. I really feel for some that contracted HSV-2 while losing their virginity etc.! That's SOOOOOOOOOOOOOOOOOOOOOO sad! :(  Those poor, yet STRONG souls... i feel for em'.

Take care & have a "most" excellent weekend =)

by feelingempty, Jul 18, 2008 01:10PM
To: PlateletGal
What the heck IS HHV-6?  I'm thinking it's the herpes zoster or whatever. ;)

by PlateletGal, Jul 18, 2008 01:13PM
To: feelingempty

It is herpes ! I guess many newborns test positive.

According to the notes I have from Dr. David Bell's findings:

What’s HHV-6? A ubiquitous herpes virus that is integrated into the chromosomes of nearly 1% of all newborns, causes roseola in small children, can infect/reside in many types of cells including the lining of blood vessels, can re-activate with stress, and “has a strong association with many diseases of the central nervous system,” Dr. Bell explains. “Everyone is exposed to it at one time or another.”

by Shanannagins, Jul 18, 2008 08:03PM
To: feelingempty
Also about 50-75% of ppl who have HSV-2 don't even know they have it!  I got it from my boyfriend (who didn't know he had it) when he had no symptoms.  Anyways don't feel too bad about having it.  It is definatly not the end of the world.  From my understanding 1 in 4 people have it.  Since I found out I am very open about it and talk to many ppl about it.  At my job alone I have found 4 other ppl who have it and ther are only 11 ppl at my work.  That is almost 50%!!!!  Also ppl should know that "oral" herpes and "genital" herpes simplex are pretty much interchangeable.  You can get either in either place.  Another tidbit of info for you is that you you can get HSV in other ways than just sex.  The virus likes to live on towels even though it will only live for a short time...from what I understand about 3 days.  Aslo you can transmit it to other parts of your body if you are not careful.  Anytime you have an outbreak use gloves to apply any topical med and keep the area clean!  I don't use any perscription remedy for it either.  I use a product called H-balm.  You can get it from a company online called Forces of Nature Oils.  The second I get that tingly feeling I apply the product and it normally stops the outbreak before it starts.  This is the best product I have ever found and I swear by it.
Good luck to you and thank you all for your imput!
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