Discussion in 'Fibromyalgia Main Forum' started by Bet2, Nov 26, 2005.

  1. Bet2

    Bet2 New Member


    I was wondering if any of you get shingles when you get a flair. It seems to always come hand in hand with me when I get a flair. I get flu-like symptoms; my whole body starts to ache and then I can feel the shingles coming on in my lower hip area.

    I believe in my situation these two things go hand in hand and I believe that for me there is a virus attacking my body that is associated with the fibromyalgia. I was just curious if any of you experience the same things.

    I'm always looking for common denominators of this thing; searching for an answer. I take Valtrex immediately which combats the shingles; before it becomes a full blown problem and that makes it regress back inside; then I have to deal with the flair issue which usually takes me a few days to knock that out.

    I have to say that the Xango has been helping me ALOT! So much that I became a distributor of it. I'm not trying to sell anything, just thought that if any of you didn't know about this product you might try doing some research on it.

    I have been feeling very good after taking it, but I still cannot seem to ingest anything with sugar or wheat; it really throws me upside down; and of course with Thanksgiving just past us I thought I could cheat a little; Big time "WRONG".

    Anyway, any replies would be appreciated on this subject.

    Thank you,

  2. Dolphin_lover

    Dolphin_lover New Member

    I got shingles a year ago last Oct. Put me down for 3 months straight in bed! Nausea, vomiting, and diareahea. I have never fully recovered from them and have been taking valtrex and other anti-virals for a year straight! I still get mild break-outs but have itching continually, non-stop. Latest doctor says its either post herpetic neuralgia or I just cannot fight the virus off! I feel for you Bet2. With this terrible disease, shingles is the last thing we need. As Casey Kasem, the D.J., used to say "... and the hits just keep on comin'!" :) I am trying to stay thankful and hopeful, but this has been one of the worst years of my life! Sorry, I'm not feeling good, a little depressed. Any help I can get would be much appreciated. I'll keep you in my prayers Bet2.

  3. 69mach1

    69mach1 New Member

    the actual rash that is breaking out? meaning do you see the blisters...

    iknow you can get it recurrently i had them the first time in feb. of this year on my darn hinny...attacked the sciatica,,,i alredy have back problems so i thought maybe it was my back and the fibro...well the nice rash was my first signal something was wrong...and heck i am so used to feeling crappy all the time most days i couldn't really tell a difference////

    but yes i do get the recurrent post neuropathy pain still on and off..hhits me in the same area where the blister rash thing was...thing down into leg to the foot or both feet....

    but i have not had anymore knock on wood blister herpes formation of shingles....thank goodness, but i do get the recurrent pain i think you are talking about...

    talk to your doctor and see about any other pain or anitdepressants that may have been release that may help you...

    i think i heard people will take tagament to help....

  4. vickiEBow

    vickiEBow New Member

    I could have wrote your post, same here, shingles on the hip every month.
  5. chantoozy1

    chantoozy1 New Member

    Your probably quite right about a virus I too sufferred from your symtoms and my husband and I have spent 3 years researching and looking at my whole medical history after being told I was Depressed or Bi Polar mm its Australia's answer to anything they can't explain as it was I was hyper thiriod not knowing this at the time I took the Drs Happy Pills and within a week I was feeling so bad I wanted to die and I had gained 65lbs. Stopped taking medicine and went to a knew MD who is also a Natural Therapist she tested my thiriod and it wasn't working meds had sent me into Horishotos Syndrome - the reason Im telling you this is that MD do not look at the Thriod anymore (can make more money by giving out different medicines) but reaction to wheat and sugar is because the thiriod can digest it properley so avoid it altogether. I now take a natural thiriod medication and the other thing for my skin / shingles candida ect (the breakdown of the immune system) I take 3 tablespoons of Virgin Cocnut Oil a day. 2 months later I am starting to feel human you can also use the Oil topically which I do the studies here in Australia have shown fantastic results and I must agree my Aches Pain and extreme lethargy are leaving me no shingles ecma rashes candida and Ive lost 35 so all in all it is reasonably priced we now use it instead of butter or cooking oils and it makes everything taste great. My therapist ordered it in for me but it is available on the Nett if you like to shop that way. Good Luck and I hope some of this helps - maybe do a temperature test everyday at same time if it is lower than normal get the Thiriod tested when its underfunctioning some people feel like a lump in throat (like holding back tears. Good Luck Bet
    [This Message was Edited on 11/27/2005]
  6. ellie5320

    ellie5320 New Member

    I had shingles front to back one side down below not nice there but when I get myself run down I get the pain and the itch all over again no rash though( blisters) was about 4 yrs ago
  7. gvmeabrk

    gvmeabrk New Member

    I had shingles back when I was in school many moons ago lol!But I have had no return of them as far as being located on my hip etc...But I have noticed for years that when I get to really feeling bad or in a (flare)I do get what has been diagnosed as herpes on my nose.About 2 months ago I started to get the blisters well you know where lol! not a very cool place.But with them being located in this area I have experienced pain in my groin and scaiatic nerve.It is very painful,and that pain can be traced all the way up and down the nerve.The last time I experienceed this was right after my menses and I tell you I was ready to take off my right leg it hurt so bad lol.I do believe that herpes,shingles etc...can cause a huge flare,if it is not fully responsible.It would be very intersting to know just how many people have a herpes type outbreak.
  8. Bet2

    Bet2 New Member

    Wow, very interesting information. Thanks so much for your responses. One of you asked "Am I sure that it is shingles?". I know that it is part of the herpes family; and there are several branches of it. I do have the kind right now in my groin area and leg where the blisters have not appeared, but the Valtrex is making if go away. It takes a few days.

    But the reason that I think it is related is because everytime I go into a flair that comes with it almost hand in hand; sometimes with the blisters and sometimes it's just under the skin (that one is the most painful).

    That's why I asked the question because I really feel that our bodies have some type of virus that is related to the mucsle desease that we are experiencing.

    What I don't understand is why the doctors haven't put this together. It seems like we know more than they do. All they want to do is give us drugs and I refuse to live my life on narcotics, antidepressants, or nuorontin; or whatever for the rest of my life. I will fight this thing until I die.

    I just read a post on arnica gel so I am going to go and get that today. I love this board because all of you are such a wealth of information and have helped me tremendously.

    God Bless you guys

  9. Bet2

    Bet2 New Member

    Would like to hear from more of you if possible.


  10. Mikie

    Mikie Moderator

    The Chicken Pox Virus, which causes shingles, is a member of the Herpes Family of viruses. These viruses can go latent with no symptoms but when we get run down, they can reactivate. Cold sores are a good example.

    Docs tell us that shingles are not contageous but can transmit Chicken Pox to someone who has not had it. I was around a neighbor whose shingles had healed with no more blisters and I got very sick right afterward. My doc told me to stay away from anyone with shingles.

    Talk to your doc about some kind of antiviral medication. You may have to take it for quite a while to beat this virus into submission. I took Famvir for 1 1/2 years and have switched to transfer factors which I pulse. There are other Herpes Family Viruses which are quite common in people with our illnesses. It is possible that you could have more than just one. EBV, CMV, and HHV-6 are very common and virulent.

    Good luck to you.

    Love, Mikie
  11. Dolphin_lover

    Dolphin_lover New Member

    After reading your post about staying away from people with shingles, it started me wondering. My Dad has post herpetic nueralgia (PHN). He has had it a few years...4 or more. I'm wondering if I could have gotten shingles from him? I was not around when he had the blisters, but we moved closer to him 2 years ago. A year later I had the shingles. I chalked it off to the stress of a major move.

    I have heard that you can get the shingles outbreak more than once, but after once or twice, most people don't keep getting recurrances. I guess we would because our immune system is so messed up.

    Bet2 and other shingles sufferers, Chantoozy1 thanks for the input.

    I know you have all cried tears of anguish and pain, as I have. My heart and prayers go out to each one of you.

    Thanks for this post. After reading all the responses, I feel so sorry for those who have the shingles, nerve pain, and itching in such horrendous places! After all I've gone through, it gives me a little comfort to know that there are others in this ungodly position. It also makes me thankful that mine is primarily on my left arm and some on the left side of my back. So you are all in my prayers and if I find anything that helps, I'll post it. Thanks to everyone who posted info

  12. 69mach1

    69mach1 New Member

    it makes me wonder why they haven't put me on the anti viral med...i have kaiser insurance...not may favorite by any means...

    iknow i getting burning and and the pain in the area that had the singles...but i had talk to some lady she said she had them on her hiny like me the first time, the second time she had them on her head...and painful more so than the hinny area she if it spread to the eyes scary...

    well i have weak immune system just for the fac t i had my spleen out about 12 years ago and ever since then i get everything....and i don't know from where...

    and the fms stuff is making it worse...

    got to go

  13. ellie5320

    ellie5320 New Member

    as I am very interested also
  14. Mikie

    Mikie Moderator

    I stopped outside her front door to ask how they are doing and she came up to the door. She invited me in but I told her that my doc said I cannot be around anyone with Shingles. I backed away and came home.

    The next day, I got sick just like I did after my exposure to a different neighbor who had Shingles months ago. My symptoms were quite unique and the same each time. When I took transfer factors, I had the same symptoms during the immune response. It's very difficult to explain, but I feel as though someone has blown ashes inside my torso and I can feel that sensation in my neck and head too. Of course, this is also accompanied by a sore throat, swollen lymph nodes, headache, coughing, and generally just feeling lousy.

    I believe that exposure to Shingles can cause reactivation of other Herpes-Family Viruses which are normally in a latent stage. My money's on HHV-6. AV's typically do not touch HHV-6 but TF 200 is effective against both strains of it. I believe it may have been HHV-6 which was stimulated by the TF's and which is reactivated when I'm exposed to the Herpes Virus, which causes Chicken Pox and Shingles.

    The good news is that I almost immediately have a strong immune response and then Herx big time. This means that whatever it is which makes me sick is vulnerable to my own immune system now and is killed off almost immediately.

    We cannot know who, out in the general public, has Shingles. My neighbor thought nothing of rubbing hers in front of me. I don't know whether she washed her hands or not. Unfortunately, her doc told her she's not able to make others sick because the blisters have gone away. I don't think that's true, especially for us. Docs know next to nothing about Herpes-Family Viruses. I don't think we can depend on them for info.

    Especially now, with holiday shopping in high gear, I believe we need to take precautions. Shopping off hours when crowds are small, washing our hands often, and carrying around those little alcohol wipes can all help. I never eat out without the wipes. Menus, S&P shakers, and tables in restaurants are crawling with germs. Same for those trays in fast-food places. Order food to go even if eating in.

    Love, Mikie
  15. ellie5320

    ellie5320 New Member

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