Fibromyalgia / Shingles

Discussion in 'Fibromyalgia Main Forum' started by Lady9872, May 12, 2007.

  1. Lady9872

    Lady9872 New Member

    I have had Fibromyalgia for 15 years. Four weeks ago I was diagnosed with Shingles; it is on one side of my face and and I was told that it would probably be worse because of the Fibro. I have never had such pain as with this shingles thing and it just doesn't seem to quit. Has anybody else with Fibro had Shingles? Could there be a link between the Fibro and Shingles? Lady 9872
  2. lurkernomore

    lurkernomore New Member

    I don't have any idea if there is a link or not. But I have lost count of the outbreaks of shingles I have had in the trigeminal nerve on the left side of my face.

    Do you know if you could still take the vaccine or do you have to get it before any outbreaks? All my GP says he can do for me now is to keep me supplied with Valtrex. As long as I start taking it within the first 24 to 48 hours of becoming symptomatic now, the pain does not get nearly as bad.
  3. abcanada

    abcanada New Member

    I have just been diagnosed with fibro, but have had shingles for years. On my left cheak as well. A little bigger than a quarter in size when it has gotten out of control. I'm only 32 and have had several outbreaks over the last 15 years. The first which I became very sick with diarhea etc. I've been told by one old rheumy there was no way I had shingles as you don't get it twice! The same guy said there was nothing wrong with me while I was in a hospital bed, very sick! Anyway, alot of docs who have examined me have felt the fact that I have shingles is a clue of autoimmune disorder...that was before fibro was diagnosed. All i nteresting Laura
    <br>[<i>This Message was Edited on 05/12/2007</i>]
  4. irishprincess

    irishprincess New Member

    i also have ebv and now adays i am told that ebv is known now as cfs. and i learned long ago that ebv is the same bacteria that causeds herpes, chicken pox and yea its linked to fibro
  5. Lady9872

    Lady9872 New Member

    Thanks for the fed back about shingles & fibro. I know there is a vaccine but don't know if you can get it after you have had shingles, I also heard you had to be 60 yo to get the vaccine. But, there are so many younger people that get shingles, I don't understand why you have to wait until a certain age. I did get medical help on the 3rd day of outbreak (when the rash appeared) and the doctor gave me the Valtrex and said that was important to catch as soon as you get the symptoms and it would last 4 to 6 weeks and sometimes longer. My shingles is on my face and the doctor also did a stain test on my eye to make sure the shingles wasn't in the my eye and it wasn't but I did go to my eye doctor to have it checked again as I was having problems with the eye but it was OK. The doctor told me stress and weakened immune systems are why people get shingles and of course with fibro I know my immune system is weakened. I just hope anyone that thinks they may be getting shingles can get medical treatment fast I know that is what helped me but it is still a very painful thing to have.
  6. pat460

    pat460 New Member

    My Mom was diagnosed with a bad case of shingles after losing my Dad and then her Mother a couple of years later. She was very run down health and stress wise from caring for them both through their illnesses.

    She too got it on her face(right side), cheek, around her eye, and in her hair on the scalp. It lasted years! She went from the red raw looking face and unbearable pain with nausea to severe itching. Even though it has healed(some faint scarring), she still has the itching spells occasionally. For some reason it itches when she eats anything sweet so she has to stay away from sugar. I don't think there was Valtrex or anything like that when she went through it. You really have my sympathy as I know how painful and irritating that stuff can be from seeing her go through it. She has never been diagnosed with Fibro but, I'm pretty sure I inherited it from her as she has all the symptoms.

    Take Care and Feel Better Soon, Pat
  7. Mikie

    Mikie Moderator

    The virus which causes Chicken Pox is in the Herpes Family. Shingles are a complication of reactivation of this virus. Herpes viruses never leave our bodies; they just go into a latent state. If we get run down, they can reactivate. Docs used to believe we could only get shingles once but there are many here who have had reactivations of them.

    Antivirals can really help shorten the outbreak but the sooner one takes them, the better. One person here said she put hydrogen peroxide on hers and it helped contain them. Ice stops the progression of Herpes sores on the lips and I've always wondered whether applying ice to shingles would help stop the outbreak.

    Love, Mikie
  8. dollinitup

    dollinitup New Member

    my dr. also says one cane only get shingle once and if you were to get it again you'd be ready for the cemetary, however mt pcp disagrees. i have had it several times including right now.

    just found out today that april and may is chicken pox season, i have to wonder because i know for sure that the last 3 times i have had it , it's been late april and may.
    i wonder if thatmay be why i seem afflicted in the spring.

    my husband had it over 10 yrs ago on his back and has never had it again. mine is always on the right side of my face along the lower jaw line. this time i also have a lesion on my tongue.
    just thought i'd add my 2 cents worth.

  9. wyattsmom

    wyattsmom New Member

    recurring herpes on my tongue. My DR said it is rare for it to be on your tongue, it is a different nerve. I am so frustrated I can't get rid of them and it hurts to eat. I would really appreciate suggestions. I take Lysine a couple times a day. I have also had shingle on my neck. I hope they don't come back! Good luck to everyone here that has them, I know they are painful!
  10. GigglePoet

    GigglePoet New Member

    HI Lady,
    I have been breaking out all last year, however my son is in medical school and I learned from him that it will only be on one side, I was seeing it on both sides of face, neck, chest and had some breakouts on ankles both feet so I went for test and found out it was HHV1 not the is the virus that causes fever blisters and you can get those all over your body and look and feel just like shingles and they treat it the same way as shingles,so now I know what is going on. I know that whenever I begane to break out..but 48 hours my lymphs were swelling and I was aching, closer to 72 hours having the chills. If you catch at the onset of breakout and get your med before 72 hours you will be able to slow them way down. I have taken a years worth of Valtrex and it wasn't workiing at all and was taking 3 a day. I knowticed I started getting sever swelling and pain in fingers and bottom of hand I asked to be put on Ayclovir and as soon as I started I went to one tablet and that swelling and pan went away. I could not eat any chocolate at all, but with the Ayclovir I have been able to get away with it a bit. I will say that it all started when I was under stress a year ago febuary before sons wedding and that is when all the fibro pain started so wither they are intermixed don't know but I am suspicious!

    You take care and (( HUGS ))))
    ~ GigglePoet
  11. victoria

    victoria New Member

    here's a copy of a post I make regularly:

    shingles... acupuncture & tagamet

    I feel lucky in that I've only had it once... but had a friend who had it for 6 months plus.

    besides valcyte...

    I used acupuncture, it took the pain away immediately and within 24 hours the lesions looked better - did a total of 5 seessions plus using valcyte, but, keep in mind I'd been suffering for a week before the acupuncture, had just gotten the first 'taste' of PHN (post-herpetic neuralgia). the pain was gone after the first session of acupuncture!!!!!!

    The friend of ours who had been suffering with shingles and PHN for 6 MONTHS even tho he'd been taking valcyte the whole time had it around his groin! He doesn't like needles so wouldn't do the acupuncture.

    I did further research online for him, found that tagamet aka cimetidine actually makes a difference. Yes, tagamet! He used it and it was gone within 2 weeks of starting.

    Tagamet has other properties as well, but of course it is out of patent, so no real research is being done. Here's some info tho:

    From Life Extension Foundation organization -

    "In 1996, a clinical trial was conducted on 221 patients with herpes zoster who were treated daily with cimetidine (Tagamet) at 3 x 200 mg during the day and 1 x 400 mg at night. The results showed that cimetidine shortened the period of disease duration. The authors suggested using cimetidine in the treatment of shingles during the earliest stages of the disease.(3)

    A case reported in Canada resulted in the statement that cimetidine therapy appeared to reduce the expected length of the active phase of herpes zoster from 35 days or more to just 10 days.(4)

    At the Golda Medical Center in Israel, in 1994, a double-blind placebo-control study of cimetidine treatment versus placebo was conducted for one week in 22 patients with herpes zoster (shingles). Those who were treated with cimetidine were found to recover much more quickly from skin rash and pain than those who were given the placebo.(5)

    At the Department of Neurology at Lady Davis Carmel Hospital in Israel, a randomized study evaluated the effect of cimetidine in the treatment of herpes zoster virus.

    The conclusion was that cimetidine treatment “shortened the median interval until the first decrease in pain, shortened the median interval until the complete resolution of pain and promoted faster complete healing of skin lesions….”(6)

    A paper presented by a researcher at Michigan State University in the Department of Pediatrics and Human Development (1990) stated:(7)

    “Suppressor T lymphocytes possess histamine2 (H2) receptors and contribute significantly to the function of the immune system. Cimetidine has been shown to enhance a variety of immunologic functions both in vivo and in vitro because of its inhibitory effects on suppressor-cell function. Successful tumor immunotherapy has been reported in experimental animals.

    "Patients who received cimetidine were shown to exhibit enhanced cell-mediated immunity as evaluated by increased response to skin-test antigens, restoration of sensitivity following development of acquired tolerance, and increased responses of lymphocytes to mitogen stimulation. Patients also demonstrated that patients with herpes zoster and herpes simplex who were given cimetidine may have benefitted therapeutically from the drug.”

    The consensus from these studies is that when cimetidine is administered to those with herpes simplex or shingles, the result is a dramatic relief of the herpetic pain as well as rapid disappearance of the blisters.

    Novel approach overlooked

    Cimetidine is the generic equivalent of the popular OTC drug better known by the brand name Tagamet. It is used primarily to relieve symptoms of esophageal reflux such as heartburn. Tagamet functions as a histamine (H2) receptor antagonist.

    What most doctors don't know is that T-lymphocyte suppressor cells have the H2 receptor. By blocking this receptor (using an H2 receptor antagonist such as Tagamet), the immune system can be temporarily turned up to help combat certain cancers and herpes viral infections.


    If I ever get shingles again (some do), I will be trying the tagamet immediately.

    all the best,
  12. Mikie

    Mikie Moderator

    Makes me very sick with an immune reaction. My lymph nodes will swell up and I feel fluish but so far, knock on wood, I have not had shingles. I know they are not contageous but my immune system doesn't like me to be around them at all.

    Love, Mikie
  13. neen85

    neen85 New Member

    Check out a "skin" product that is OTC caled "Herpanacine". The patient testimonials say it treats all skin conditions,including the viral problems. I used it for very dry skin and I was glowing! Might be worth a try! Daneen
  14. LouiseK

    LouiseK New Member

    Very interesting. Thank you for posting.

    You wrote:

    What most doctors don't know is that T-lymphocyte suppressor cells have the H2 receptor. By blocking this receptor (using an H2 receptor antagonist such as Tagamet), the immune system can beTEMPORARILY turned up to help combat certain cancers and herpes viral infections.

    Any ideas as to why this would be only TEMPORARY? (Caps for emphasis)

  15. victoria

    victoria New Member

    you could look up the references perhaps at the life extension org tho, perhaps that might give some insight?

  16. Mikie

    Mikie Moderator

    It was supposed to be effective in reducing the fibrin on the blood. It upset my stomach so horribly that I could not tolerate it. I had to do the Heparin injections instead. The Heparin caused some of the strongest immune reactions and Herxing that I have had. Wish the Tagamet would have worked as it's a lot easier than the shots.

    Love, Mikie
  17. kevieb

    kevieb New Member

    i had shingles when i was only about 4 years old. my mother said it was on my back and down the back of both legs. i have a good sized scar on my lower back that is numb from the shingles. she said the doctor took a picture of it because it was such a classic presentation of shingles. i have always heard that it was unusual for me to have shingles at such a young age.
  18. tanere

    tanere New Member

    I was diagnosed with fibromyalgia about 4 years ago. I have had shingles repeatedly for the past 24 years of my life. I was in my freshman year of high school the first time I got them. As time went by they kept reappearing. The doctors were mystified. They said most people only get shingles once if that. As you well know test after test came back normal. Finally a new doctor I went to checked me for the trigger spots of fibro. and I was diagnosed then and there. Fibro. just plays havac with the immune system. Most people with fribro. I've talked to hasn't had shingles yet though. I had to reply to this message because I felt all alone. Not that I would wish shingles on my worst enemy. Your doctor can prescribe medication if it's caught in the first 24-48 hours after breakout. Best of luck and I hope this will be the last time that you get shingles.
  19. Cialini

    Cialini New Member

    I have not had Shingles, but my mother got them about a month ago. She does not have fibro, but she was in so much pain. I didn't realize how painful shingles can be. She had them on her forehead and they traveled down to her eye and caused some damage.

    I hope you get over them soon!
  20. Bet2

    Bet2 New Member

    I truly don't think our medical people have a clue sometime. I don't go to traditional docs much anymore. Most everything I do is untraditional. With that being said. I break out consistantly (they call it herpes zoster), but the same family on my left buttock.

    It is painful and itchy. I take Valtrex to control it but sometimes I don't catch it in time and it goes into my groin nerve (big ouch).

    Shingles is not a one time thing, and I truly believe that there is a link between that viral condition and FM.

    Just my 2 cents worth :)