Fibro & recurring shingles??? HELP!!!

Discussion in 'Fibromyalgia Main Forum' started by alysiap, Dec 7, 2005.

  1. alysiap

    alysiap New Member

    Hello. I am new to the site. Does anyone else have fibromyalgia and recurring shingles??? or am I all alone. I am sooo tired and now I have shingles on my face. I just wondered if anyone else with fibromyalgia gets recurring shingles? I also have hypothyroidism and thought maybe all of this went hand in hand? Thanks Alysia
  2. CanBrit

    CanBrit Member

    Welcome to the board.

    I had shingles in my twenties and thankfully, I haven't had it again (49 now). I do have hypothyroidism. Does your doctor do anything to help with the shingles?

    There seems to be a lot of co-existing conditions with FM. We all seem to have at least one of them. I have IBS as well as restless leg syndrome. Had the two of them for years. My hubby just thought I couldn't stop moving!


  3. alysiap

    alysiap New Member

    Thanks for your reply. I too have restless leg syndrome and it absolutely drives me nuts. At first I thought I was developing MS or something, now I have just gotten used to it. I feel for you and suffer along with you. I think the shingles are just stress related.... we're opening a candle and craft business and the holidays and all. Seem to occur when something gets me really stressed out. Take care. E-mail me anytime. Thanks
  4. kriskwon

    kriskwon New Member

    I too have FMS and reoccuring shingles. I am 46 and have had them 25+ times. The doctors (Nueroligist, Infectious Disease Specialist and Fibro Doctor) are really trying to help me, but so far nothing definitive. They believe that there is a virus that is in my spinal cord fluid. The virus is causing the shingles and the fibro, or the fibro is bringing out the shingles.

    Right now I am taking Valtrex daily (1000 mg) and 1000 mg, 3x a day when I have a break out. I also take Neurontin on a daily basis (300 mg, 3x). It helps both my Fibro and Shingles. If they could pinpoint the virus they would be able to treat it MUCH better. I guess there are millions of viruses, and whichever mine is has not been "discovered" yet. The IDS doctor said that diseases such as Lupus, MS, etc took years and years of study before they could deal with it.

    If you type "shingles" into the search box, you will find that there are many threads on the subject. I told all my doctors that and they were very intriged (sp?) that so many people with Fibro also have had shingles.

    The only other thing I can tell you is if you ever get it again - take your medicane ASAP! You need to take within the first 48 hours. I don't think it could be linked to your hypothyroidism, they really don't have anything to do with each other. I'm to tired to explain, but when you look at other threads, you'll understand why.

    I REALLY feel for you though. I have mine on my stomach, butt, and hips. They hurts sooo bad sometimes I can barely hold on. To have them on your face must be just terrible. I also know that they can cause a lot of complications when you have them there.

    If you have anymore questions, let me know. I have shingles right now (on my butt - not fun!), that's why I'm so tired, but I'll check back in the morning. I will also pray for a quick healing for you.

  5. Mikie

    Mikie Moderator

    It is the same virus which causes Chicken Pox. It never leaves the body after the Chicken Pox outbreak. It can lie dormant for years and cause Shingles when one gets run down.

    All Herpes Family Viruses are chronic and latent and can reactivate. Cold sores are a good example of this.

    If one has another chronic virus which keeps one in a constant state of illness, it is possible that the Shingles can break out over and over. Same for a chronic bacterial infection which keeps one sick.

    I like the new FFC's because they extensively test for chronic infection. It is almost impossible to heal if one is chronically infected. If other infections are cleared up, it is possible for the virus which causes Shingles to go latent and stop causing problems.

    I cannot be around anyone with Shingles. I get very sick. I've had Chicken Pox and doc say Shingles cannot be passed from one person to another. There is something in my immune system which causes an enormous immune reaction to anyone with Shingles. There's a lot about these viruses which we don't understand.

    Love, Mikie
  6. lurkernomore

    lurkernomore New Member

    Yes, count me as another who has fibro and have had 27 cases of shingles documented by my doctor. That does not count the times I have gone ahead and started the Valtrex on my own here at home.It sounds unbelievable, I know, but it is the truth.

    I also get them on my face, in the trigeminal nerve. Have had them spread into the eye once and that was a nightmare! I was warned that I could lose my cornea if that happened again so now I am very mindful of that fact.

    The doctor is amazed by how calm I appear when I show up in his office with yet another case. But I mean, really, what am I supposed to be doing, writhing in the floor in pain? At times I would like to, but it wouldn't help. Sometimes I think having fibro has desensitized me because I also had a dry socket once which took three trips to the dentist before he would believe me. He said I could not possibly have one because I did not "appear to be in enough pain."

    People just don't get how fibro changes the way we have had to learn to react to pain at all. And by the way, I do feel *your pain,* I truly do!
  7. 1horse

    1horse New Member

    Dont have singles, but I get recurring fever blisters every week.. really a pain. I have fm and cfs.
  8. athome

    athome New Member

    Hi Alysia! So sorry to hear of your combined conditions! First, I will pray for you and send healing light your way.

    Then, to how I have lived with all 3 of yr conditions over the past few years. (i have fibro, cfs--diagnosed in '93 after 5 yrs coping, hypothyroidism since teen years, and in June-September was completely bed-ridden with shingles on my face and scalp.)

    So the shingles, post-shingles management first-- I have had many painful times but have to say shingles was the worst! Could not drive myself; could leave here w/ someone, being shaky but mobile, and 20 minutes later, writhing in pain and screaming for relief, actually screaming! twice was sent from dr's offices to hospital, where they used Dilaudid and Neurontin and other stuff to get the edge off. Looking back I can see that the shingles and afterpain (trigeminal neuralgia) took over my life for a full 16 months.

    Never have I had somethng so debilitating! Could barely get self from bed to bathroom.

    What helped? the antiviral meds Acyclovir and Valtrex. Had to have two courses of that--dr's and my mistake there---lesson: if you are gettting NEW blisters after you fiish with the Valtrex, insist on being seen. I didn't and that made the severity and length of the active shingles worse.

    Neurontin---was already on 800mg 3x/day, was upped to 900md 4x/day.

    Lortab---6x/ day. Whenever I missed a dose---horrible increase in pain!

    Lidoderm patches--expensive as all getout, but help somewhat. I felt they helped but then seemed to have a "bounce back" of increased pain when they were removed.

    Duragesic (fentanyl) pain patches. I was already on the 25mcg patch for the fbro/osteoarthritis pain, and this was upped to 100msg, and then after referral to a pain specialist, to 150mcg. every 72 hours. Be aware they do not always last 72 hours for some people.

    Ice packs---have at least 12 of those babies and still use them for pain sometimes now.

    My son kept calling---he and his wife were expecting my first grand-daughter--tellng me to sleep, and to eat protein, in order to heal. I relied on a helper to keep me in fresh chicken salad and cut-up fresh pineapple. Did not force food, tho. For weeks, could only stomach tapioca packs and little toast rounds, but that got better.

    I felt fortunate that the shingles were on my head, so I could wear clothes, but did have my eye at risk. The eye doctor I was referred to by my excellent internist was very helpful. Shingles around the eyes scares them too, so never had to wait to get in. For some reason they warned me to get there asap if having trouble tolerating light. I was,for many months. Can now be in a brightly lit room w/out my "glamourous" sunglasses! LOL

    It has been unbelievable to me how long the afterpain, the postherpetic neuralgia, pain in the upper branch of my trigeminal nerve, has lasted.

    I am happy to say that, altho there is still a nagging, constant, prickling pain in my left eyebrow and the left side of my head, I think I am much improved. Have only slept with my ice paks 2-3 times in the past few weeks, am only taking 2 800mg Neurontin/day, no Lortab, one 25mcg Duragesic patch every 3-4 days.

    (I did take LarreaRX for several months, an old Indian antiviral, and think it was a good idea. I plan to take more of it.)

    I do rely on massive doses (5000-7000mg) of Vitamin C, large amounts of Vitamin B(good for anything to do w/ the nervous system), Folidreen for lots of folic acid, applications of PainBreak cream from Dr.Berkel, whom I found by posting on the Cleveland Clinic site, and a pain relief spray given me by my accupuncturist. (Accpuncture, along with biweekly colonics were the only things that reliably gave me relief. Some accupuncturists combine it with a laser light treatment.) Sometimes, when the neuralgia is really twingeing, I use Bactine.

    I recently came down with a mild flu, and was on Rimantidine, which is always on hand thru the winter because of my severely compromised immune system. I decided to gve in, stay home, get all the rest I needed, eat no junk, and do everything I could to cleanse the liver, after having a fourth-generation accupuncturist say my liver needed attention. (After 2 weeks of that, the most horrible black gunk could be scraped off my tongue!!)
    I am really much, much better. While still in the vomiting, headache stages of the flu, I had an increase in the pain, but managed with only the cream and more ice paks.) Now am better than I have been in 18 months. On a scale of 1-10, the pain generally hovers around a 3-4, ater months of 5-8!!

    Good luck to you. I don't know your home situation, but stay as unstressed as you can, and get tons of rest. I also think distraction is a key in managing pain. To me it is the best, and my new granddaughter sure helps! I'm not sure of posting rules here for giving website info but you can email me. I will check back--have not been on this board for a long time.

    May You Walk in Peace and Beauty--- Nana
    <br>[<i>This Message was Edited on 12/09/2005</i>]
  9. kriskwon

    kriskwon New Member

    bump so Alysiap can see
  10. alysiap

    alysiap New Member

    Thanks all of you for writing me back. I am sorry for your conditions but it truly helps to know I am not alone. The shingles are getting better right now but still have some pain. I have never had them in my eyes but this time it was the closest as it has ever been, being just below my right eye and all the way down to my lip. For the first time ever, my face felt almost numb from the shingles and my eye kept getting gunk (sorry about the lack of a better term) in it. I have valtrex but haven't been able to take it due to nursing my son. Thank God he is close to weaning. I wanted to mention that when he got his chickenpox vacination that I got a small spot and now the little one I babysit for just got his vacination and I got this bad case of shingles. I wonder if there is a relationship between the two? Well I wish everyone of you the best and God Bless you. Thanks for your kind healing words. My best to you. Alysia
  11. alysiap

    alysiap New Member

    Thank you for your words of wisdom and sharing with me. I am thankful to have found this website. May God bless you and keep you free from pain! Alysia
  12. victoria

    victoria New Member

    here's a copy of a post I made a while back and to someone else's post today:

    we had a friend who had recurrent shingles & PHN and a lot of pain as it was in his groin area! (BTW, Shingles is a herpes virus, it is a reactivation of the chicken pox variety, herpes zoster.)

    None of the antiviral drugs helped him. But Tagamet - yes, Tagamet - did.

    The recommended dose is: take 200 mg of cimetidine (Tagamet) three times a day and then 400 mg a bedtime.

    I did some research to try to help him and this is what I came up with. It is from Life Extension Foundation ( and explains WHY it works:

    Herpes zoster (shingles)

    "The most common neurologic condition known is herpes zoster, usually referred to as shingles. The CDC says that up to one million people in the United States contract herpes zoster each year. David Cooper, M.D., a contributing editor to JAMA, stated in 1998 that shingles afflicts more than one million people every year.

    "Herpes zoster is a reactivation of the virus that causes chicken pox. Once a person has recovered from chicken pox, the virus (varicella) remains dormant, hiding among the connective nerve tissue in the body.

    "No one seems to know why it occurs, although stress and/or a compromised immune system is thought to exacerbate the condition, but it usually activates in people over the age of 50. Traveling through the ganglia, it causes a tingling, stinging or burning sensation. A couple days later, once the virus has completed its journey to the skin, an irritating and painful rash and accompanying blisters may erupt. The resulting condition can be so painful, the patient may be unable to tolerate clothing or anything that touches the affected area.

    "In cases of herpes zoster (shingles). . . Tagamet/cimetidine has been successfully used to lessen the debilitating pain and intensity of the skin rash and eruptions.

    "Published studies indicate that viruses like herpes zoster and simplex can be put into quick remission, or the breakouts prevented altogether, when T-lymphocyte suppressor cell function is inhibited. The best way of accomplishing this is to take 200 mg of cimetidine (Tagamet) three times a day and then 400 mg a bedtime.

    Tagamet is available in pharmacies over-the-counter. Suggested use is to initiate Tagamet as soon as symptoms of a herpes-related virus infection appear. Continue to take it for one to two weeks after all symptoms of the outbreak have abated.

    "When it comes to treating herpes infections, conventional doctors seem to only pay attention to drug company propaganda, while failing to recommend lower cost drugs (like cimetidine) that have been shown to work especially well in herpes patients.

    "Cimetidine (Tagamet) is a histamine2 (H2) receptor antagonist and, as such, can contribute to the enhancement of immune function. Various studies indicate cimetidine's effectiveness in suppressing herpes infections.

    "The first case observation occurred in August 1977 when a patient developed shingles just before commencing a course of cimetidine for a chronic stomach ulcer. The patient experienced dramatic relief of the shingles pain and rapid disappearance of the eruption.

    "On the basis of this observation, cimetidine was prescribed to 21 patients with herpes zoster (shingles). The results were encouraging in 18 out of these 21 patients. The trial was then extended to other herpes virus infections.

    "In six out of seven patients with herpes labialis (lip), the blisters were aborted, and in one patient with herpes keratitis the result was also encouraging, with the attacks being markedly shortened in duration and reduced in frequency. The results of these preliminary trials showed the potential role of cimetidine in the treatment of herpes virus infection.(2)

    "In 1996, a clinical trial was conducted on 221 patients with herpes zoster (SHINGLES) who were treated daily with cimetidine 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)

    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.

    "One precautionary note, even though Tagamet (cimetidine) is sold over-the-counter, refer to the package insert to make sure it does not interact with prescription drugs you may already be taking.

    "Please note that if your doctor prescribes generic cimetidine, it may cost less to obtain it as a prescription drug (especially if you have prescription drug insurance) rather than buying the Tagamet name brand that is available without a prescription."

    I also read something recently that geranium oil can help get rid of the PHN pain. And, taking lysine as a preventive can work. Hope you're feeling better soon!
  13. nerose

    nerose New Member

    I found this site while using google to see if fb and reoccuring shingles are related. I was dx with fb about a year ago after being treated for everything else under the sun. I'm 33 and I've had shingles 6 times since 2002 and I have neuropathy in my right leg due to the damage from shingles. I have them again and I'm in so much pain. Nothing seems to work. I'm on the valtrex and neurotin on top of my elaval I take for fb. My dr has said to take motrin for the pain but it doesn't help. I think there needs to be more study on the relationship between fb and reoccuring shingles. Next week I'm going to search out a neurologist who I hope will be able to help me get thru this and prevent a future outbreak. It breaks my heart to see so many people who suffer like I do. I'm remembering each of you in my prayers. God Bless.