Update on Shingles - How to explain the pain

Discussion in 'Fibromyalgia Main Forum' started by Greenbean7, Mar 10, 2006.

  1. Greenbean7

    Greenbean7 New Member

    My DH asks me every day how I feel. He's asking about the shingles I have had for 2 weeks now.

    This morning I told him I was feeling better, but in order to explain how much "better" I felt, I had to first explain how shingles feels. This what I told him it feels like:

    1. I must have at least 3 broken ribs. I hurt from my sternum to my spine. Unrelenting, hard to get a deep breath kind of pain.

    2. I have a massive cigarette burn, with blisters, right over top of the place where the ribs are broken (2 places actually). We all know how bad a burn feels and in my experience a cigarette burn was the worst (thank you Colleen for putting that cigarette out on my hand 25 years ago, I have never forgotten!).

    3. I have been stung with nettles in the same places, causing itching and burning and leaving thousands of little barbed stickers in the blisters.

    Ok, today I feel better. I only have several hundred little stickers!

    So, better is relative and so is my mood!

    Hugzz
    Greenbean

    Stop and smell the puppies!
    [This Message was Edited on 03/10/2006]
  2. lovethesun

    lovethesun New Member

    Hope you get well soon(on the Shingles)

    Samantha55-the chicken pox virus remains in our system and as an adult its the virus that causes Shingles.Linda

  3. AbbeyMae

    AbbeyMae New Member

    I have not had the shingles since Dec.l 2005--which is "knock on wood" good. I have had them sometimes every month. In 2005 I had two surgeries. One was in April, cervix and uterus removal vaginally and a bladder suspension. My pathology report said that I had endometriosis in the muscle of my uterus(Doc said no wonder I went through such turmoil), I was actually Dx'd when I was 16, now 47. Then in August I had an emergency appendecomy(laparoscopic). Now I just went through a major molar(#30) extraction due to abscess. I went to a recommended dentist from a holistic dentist(Dr. Andrew Weil's dentist) to do the extraction, clean out the infection, even in the jaw bone(cavitation), and bone augmentation, and even the removal of the periodontal ligament. I had let the toothache go on too long, thinking that my fibro was attacking the area. Once again, I am on antibiotics(taking acidophilus/probiotics). They say stress is one of the major causes of shingles and that includes pain and health conditions that propose stress to our bodies. When I have shingles, it is in the same place on the right upper buttocks(gluteus maximus). Anyway, when I have them I go through the worst pain from neck to toes and pain meds do not work. So I suffer until they go away until next time. I take L-Lysine intermittently and a homeopathic remedy Rhus Tox., which is also good for aches too with fibro. and arthritis. I also make my own colloidial silver and drink plenty. I am praying that these shingles do not return anytime soon. I also have degenerative disc disease of the spine. The herpes-zoster is dormant in the spine. Dr.'s have not helped me too much with this, as I think they are as confused as I am. I've tried the Valtrex and others and they just make me feel worse. My chiropractor says that medication will just dig the disease deeper into the body on an energy level. I am just hoping that some of these physical stresses have been eliminated and my shingles will no longer appear. Time will tell. My heart goes out to you and I can empathize with you. Hopefully you are on the road to recovery on this one.
    Hugs to you,
    AbbeyMae
  4. day2day

    day2day Member

    I have had outbreaks on my left back that is always on the leftish side that is anywhere from my mid back to top of buttocks area. I have been told it is chornic shingles, ( I was always under the impression you only got shingles once or twice in your life time?)

    I posted earlier that I had a bad fall in jan and broke my tail bone (have complications from it) and my skin from foot to top of waist is in extreme pain to touch. I have been having out break after out break of shingles or what ever this is. I use to get it only 1 or 2 times a month, now it is weekly it starts errupting again, before the last outbreak has even healed.

    Im such a mess I don't know what is going on anymore.

    To top this off I just got a letter from Social Security, they are reviewing my disability claim to see if I am still elegible.....I am sooooo stressed that they will say I am better.

    Thanks for letting me panic:)


    Greenbean.....I surely hope you feel better soon.!!
  5. tonakay

    tonakay New Member

    Are the monsters healing up yet? Just wondering if you started the lidoderm patch. It seems to be helping with my back pain...

    Hope you're feeling better!
    Tona
  6. Sheila1366

    Sheila1366 New Member

    Oh my Lord. I know you are hurting.

    And this has been going on for 2 weeks.I would have strangled someone by then.

    What kind of treatment are you getting?

    I will praying a special prayer for you.

    I am so sorry you have this to deal with this too.

    Take that pain medicine if you have some ,if you don't have any get that dr. to give you some strong stuff.

    Gentle Hugs my friend,
    Sheila
  7. Mikie

    Mikie Moderator

    One could feel worse on antivirals is because the virus gets stirred up when the medication starts killing them. This causes the immune system to produce an immune response. Finally, when enough viruses are killed off, the body will purge them with sweating, nausea, and diarrhea. It has to get worse before it gets better. Left to their own devices, Herpes-Family Viruses will just continue to make one sick.

    If once does not want to take AV's, there are transfer factors which help the immune system kill pathogens on its own. The undenatured whey and colostrum, along with probiotics, will also help the immune system.

    I hope your shingles get better.

    Love, Mikie
  8. AbbeyMae

    AbbeyMae New Member

    I was told by my physician that Valtrex and other Anti-viral medications can only lessen the severity of the sypmtoms accompanied with a virus, including Herpes Zoster(Shingles). Also if you take an AV for a long period of time--you are opening yourself to a rebound. AV's can suppress the virus and a rebound effect can occur when you go off the AV. This can result in a worse outbreak than you have ever encountered. But everyone is unique, and what works for some may not work for others. Anyway good luck to you with your treatment and prevention of your shingles. Also look into boosting your immune system. Most of us with FMS and CFIDS have compromised immune systems, including myself. For me, I take a product called Seavive with Seacure and other ingredients. Right now I am on my second Rx of antibiotics. Antibiotics are necessary for infections but they also weaken the immune system. I am taking a good probiotic called Flora Source and Kyo-Dophilus and i am now on Keflex and thank God I am not having diarrhea.
    Lots of Love,
    AbbeyMae[This Message was Edited on 03/12/2006]
  9. Mikie

    Mikie Moderator

    Are increasingly using AV's to treat their patients. Sometimes, they pulse the AV's and that seems to work well. The AV's do seem to get the viral load down and often put the viruses into the latent state. Herpes-Family Viruses never go away but can go latent in the body where they apparently do not cause problems. They can reactivate even decades down the road. Shingles is reactivation of the virus which causes Chicken Pox and is a Herpes-Family Virus.

    The idea of pulsing the AV's is to attack if there is a rebound. Viruses are the smartest and trickiest of pathogens. When they are under attack, they will muster every trick they have to avoid being killed.

    Many pathogens hide out in the fibrin overgrowth which often accompanies chronic infection. The Heparin treatments cause the pathogens to be exposed to the immune system and this is often enough to "wake up" the immune system so it can go after the pathogens itself.

    Transfer Factors seem to work the best against the pathogens, including viruses. The HHV-6 is especially resistant to treatment but the TF's have had an effect on them in many cases.

    We can have multiple chronic infections. and they all need to be treated. We also need to build up our own immune systems so that they can do their work.

    We are all different and different docs have different opinions on treatment options. The more cutting-edge docs are using the AV's.

    Love, Mikie
  10. NyroFan

    NyroFan New Member

    Greanbean:
    I am so sorry you have to bear with that. Years ago I knew a man who had shingles and he was climbing the walls.
    I hope you feel better real soon and get those sensations out of your body.
    Hugs,
    NyroFan
  11. Greenbean7

    Greenbean7 New Member

    Thank you everyone for your concern and help!

    I am slowly getting better. Starting to scab over which is a good thing! The itching is gone but the pain seems to be hanging in there! Still have pain from my sternum to my spine and shooting pains part of the time.

    I didn't figure out what it was early enough to have the anti-virals help. Doc said had to catch it in the first three days in order to have them help. I'll sure know what it is if it happens again!

    He gave me Lyrica for the pain as it is supposed to work on nerve pain. My neuro said it took a while to work because it had to build up in your system. Since I can't take it and work it won't build up in my system so it is kind of worthless.

    Nothing else works. Neuro offered me narcotics, but I can't take those and work either and since the Lyrica knocks me out I didn't figure I needed anything else just to make me sleepy!

    Thanks again for all your concern and help!

    Hugzz,
    Greenbean

    Stop and smell the puppies!
  12. tonakay

    tonakay New Member

    Glad they are finally scabbing over for you. My back/rehab doc started me on lyrica last week. I take 50mg at bedtime to help with the leg nerve pain and to help me sleep. What mg. did your doc want you to take?

    Hugz,
    Tona
  13. Greenbean7

    Greenbean7 New Member

    He put me on 75 mg twice a day. Of course I can't take it in the morning unless I plan to sleep all day and my boss really hates that!

    I have been taking it in the evening and I think it has also been helping my leg pain.

    I had that shot in my back two weeks ago and I don't know if it helped or if the Lyrica made my leg pain better. I am going to stop taking it and see if the pain comes back in my leg.

    I have another shot scheduled this week. I really need to see if that is helping or if it was the Lyrica.

    So watch for a post about the shot again, I'll let you know if it is the shot or the Lyrica!

    Hugzz
    Greenbean

    Stop and smell the puppies!
  14. kriskwon

    kriskwon New Member

    I too have reoccurant shingles and as a matter of fact, I have them as I write this. I get them any where from the small of my back, outter thigh, and mostly on the side of my stomach. Oh, and always on the right side. When I have a break out, I take a 1000 mg of Valtrex a day. I also take one every morning even when I don't.

    I also take 900 mg of Neurontin to help with the nerve pain and to lesson the chance of getting PHN (I think that's how it's abbreviated). If you think shingles are bad, this is the worst pain ever. I had it a month following a breakout for 2 weeks and literally thought I wasn't gonna make it because of the pain. I also take neurontin for my FM

    Anyhow, back to my point. I could NEVER work with this!!! I think you should get "Employee of the Month" Award. Oh yeah, the only thing that I've found to help with the pain (for some reason not even morphine works) is Tylox.

    You're one brave girl and I hope you get well soon.



  15. foxglove9922

    foxglove9922 New Member

    I want to join the group that has shingles in the upper left side of the butt! I just got over my 11th bout of shingles always in that same area........ahhh.....they are the pits.

    hang in there.....foxglove
  16. neen85

    neen85 New Member

    I used it for other skin problems,but the patient testimonials for herpes-related skin problems were positive. It would be worth looking at for all of the pain you are in. It is advertised for all skin problems. Daneen