ANA Discussion Forum
General Category => Inquiries => Topic started by: linnilue on September 24, 2007, 06:54:33 pm
-
Hi Everybody, I know this isn't an AN issue, but this is the only group I trust to go to for info. I think everybody here has a wealth of information and experience to share. Anyway, I was diagnosed with shingles today. In case you hadn't noticed, I haven't been posting much lately and that's because I have been in so much pain and just feeling so sick. I have the shingles rash down my left leg and honestly, nothing I do seems to get rid of the pain for long. I'm on narcotics, valtrex, motrin, tylenol, hot and cold packs and nothing works...I'm in constant motion just trying to get comfortable. Does anyone have any suggestions for m?. I'll try just about anything. I'll check back later. Thanks..Holly ??? ???
-
Hi Holly,
Very sorry to hear about the Shingles outbreak. I haven't had that experience but my father had it last year and was miserable for several months. I know you have a nursing background and probably have already checked the internet, but just in case, here are some links I found that might have some helpful ideas
Mark
http://www.healthscout.com/ency/68/138/main.html#TreatmentofShingles
http://www.lib.uiowa.edu/hardin/md/shinglestreatment.html
http://www.webmd.com/skin-problems-and-treatments/Shingles/Shingles-Treatment-Overview
http://www.healthology.com/main/article_print.aspx?content_id=3744
-
Thank you Mark, I will review these sites. Yes, I have looked at a couple and I have to say, I ahd no idea just how bad this disease is. I have an appointment this afternoon with the pain clinic to do some sort of nerve block. I hope to God it works. I haven't slept in days and I'm just exhausted from the pain. Thanks for the sites. Holly
-
Someone I work with took Lyrica for their shingles. She was taking Vicodin along with it and said felt like a zombie but it did help her with the pain.
Think I have seen patients get neurontin for it also.
Cheryl R
-
Oh Jeez Holly, I can sympathize, I've had those buggers, TWICE! Once at 27 and again at 46. They SUCK! All I could do was take good pain meds, anti-virals and wait it out. Some believe thay are connected to ANs somehow. Hmmmm.....
Just hang in there baby and know we are here if you need to complain a little. Out thoughts and good vibes are with you!
Capt Deb 8)
-
YIKES - how awful they are!! My primary care M.D. talked me into a shot called Zostavax which will help prevent shingles especially if you are elderly like me - 60!! Had my hubby get it too. ;D
Sheryl
-
Oh Jeez Holly, I can sympathize, I've had those buggers, TWICE! Once at 27 and again at 46. They SUCK! All I could do was take good pain meds, anti-virals and wait it out. Some believe thay are connected to ANs somehow. Hmmmm.....
Just hang in there baby and know we are here if you need to complain a little. Out thoughts and good vibes are with you!
Capt Deb 8)
Thanks Captn, I didn't know there was a cnnection to AN's. Do you know where you might have heard that. What an interesting concept. Abd you got it twice!! That's extremely rare. But the pain is incredible isn't it???!!! Whoa Nelly. I liken it to being in labor totally out of your mind in pain with no relief in site. I did get an epidural yesterday at the pain clinic. The shingles lay in the L4 deretome of the spine. i am more comfortable today but I am exhausted. Pain is brutal. I know you suffer from migraines and i have ahd a headache everyday for a week along with this so I can't imagine what you go through. I am on narcotics, motrin, tylenol. I'll take anything to get relief. Thanks for the sympathy, Holly
-
Oh, man..so sorry abou your shingles. They are awful. I had, literally, a spot of them at my waist line when I was in my early 30's. I remember they mostly itched. I have a scar from them because the spot is towards the back of me and I couldn't see it and I just itched the heck out of it before I went to the doctor. I remember the doctor visit because my old doc said, " Oh, you know what this is?" And I thought..."Well, no...duh. That's why I'm here." Recently, I asked my doctor about that vaccine and he said they weren't recommended for anyone under 65. I helped with care giving of a lady in her 90's who got it and she was quite miserable. They had her on a patch to wear that had some kind of narcotic in it. She got quite dependent on the patch and had to get off of it.
It's too bad you can't just take something and sleep through the next few weeks. Well, as we all know, it's from the Chicken Pox virus that stays in our system only to wreak havoc on us at a later time, usually when our immune system is down. The lady in her 90's had radiation on a cancerous lung tumor and she got shingles after that episode. That's why I asked my doc about it, since I had GK. Perhaps I shall ask him about this vaccine again. I don't want shingles!! I wouldn't wish it on anyone. Except maybe Bin Ladin or somebody like that. ;D
But not you, nikynu.....I pray you get better soon.
Sue in Vancouver
-
Thanks Sue for your support. The doctor basically told me that my immune system was quite depleted. So, I'm going to go on Amazon and look for books on how to boost it. I didn't know there was a vaccine, but I guess I won't need it now but I'll pass the word on to my friends that it's available. My leg is breaking out in lesions by the hour, it's UGLY. I did feel well enough to ride to Starbuck's with my husband to get my daily fix, so that's good. this virus just wacks you down. And I too would wish this on Bin Laden or Amadinijad, yeah, that's sounds good! Have a nice day , Holly
-
Holly,
I do believe Shingles is impacted by immune system related issues. I've always been a proponent that consistent exercise is probably the best method to increase white blood cell and other immune system indicators. I found some links to web sites that offer other ideas
Mark
http://naturalmedicine.suite101.com/article.cfm/10_ways_to_boost_immune_health
http://www.microsoft.com/canada/home/healthandwellness/2.2.25_boostyourbodysimmunesystem.aspx
http://www.webmd.com/cold-and-flu/features/using-your-immune-system-to-stay-well
http://www.goaskalice.columbia.edu/3647.html
http://www.wellnessletter.com/html/fw/fwLon16Immunity.html
Hope that saves you a trip to the library or Amazon ;D
-
Thanks Mark, You're a really nice guy to do all his legwork for me. I greatly appreciate it. Holly
-
Hi, Holly:
Although I haven't experienced shingles (and hope I never do) I still wanted you to know that you have my condolences for the severe pain you're going through. You'll definitely be in my prayers. I hope (and will pray) that this affliction leaves you, soon.
Jim
-
Hi Holly! My dad had a bad bout with them last year for about 3 months...he was on morphine that whole time...and to put that in perspective, by day 3 at home after a quintuple bypass he'd weaned himself off of pain meds. He's a lot like me in that way. But he was miserable with the shingles. I also know that stress is a factor, which would of course lower your immune system, so feed yourself well, and try to do anything to relax yourself. Get plenty of sleep, which I think is always the best medicine. I hope they resolve soon!!!! Will be crossing my fingers for you...
Take care! Kathleen
-
Thanks Everybody for all your support and kind words. I have to say, you DO NOT want this disease. It is brutal. i'm only able to go online when my narcotics kick in and that doesn't last long. The pain is difficult but there are all kinds of wierd feelings in my leg, like creepy crawlies or something and my leg makes me feel so restless with pain that I can't get comfortable. I had a horrible night last night and I pray that I can get a few hours tonight. This morning I has just fallen asleep (having been awake for hours) and the darn phone rang at 7:30! I was ready to scream because I was so tired. My husband and I decided to temporarily put an answering service on our line in the a.m. so that I can be certain to get some much needed rest. I do know that I have no immune system and so I am working on educating myself on giving it a much needed boost. I realize that this thread is outside the ANA scope but it has helped me to feel all your support and get all your advice, thoughts and prayers. I'm proud to be apart of such a kind group. Thank you all and here's to a good night's sleep for all of us, Holly
-
nikynu -
I had the shingles when i was 38 years old. I was lucky it didn't last too long. The only thing that help the pain was a cool towel (very light towel)... I would soak it in ice water and wring it out and lay it on my stomach. That was the only thing that I could tolerate.
I think having the AN surgery must stress out your body. I remember for four days prior to surgery, the doctor prescribed a medicine (can't remember the name). I looked it up on WebMD, and it was an anti-viral medicine for prevention of herpes (same virus that causes shingles). I know when I was post-surgery in the hospital they gave me that medicine too. Luckily no shingles.
-
Hi Holly,
I'm sorry to hear about your shingles. I hadn't heard that there is a possible connection between shingles and AN's as Capt. Deb mentioned either. I wonder if there are any studies or information on this. My daughter, Chelsea, also had shingles when she was in the 8th grade, about 13 years old. She was given anti-viral meds and vicodin for pain. When one of my clients that's a Doctor found out about her situation he said she needed to get off the anti-viral meds and take mega doses of vitamin C. He felt the meds were too harsh and said even in his elderly patients he avoided these meds if possible and only used them for HIV cases. Anyway, she started with 2000mg vit-C for 1 week then 1500mg for 2nd week and 1000mg for another 30 days. It worked and the shingles cleared up not to say they wouldn't have with the meds but I was glad she wasn't taking them.
Her pain was not as bad as yours sounds. She would soak in cool water with an oatmeal based soak. I think it was Aveeno. When the rash first started to appear I figured it was just a rash and had her use cortizone-10. After several days when the rash had spread I took her to the doctors and was told that cortizone was the worst thing she could have put on it. I guess it's good to find out from the docs whats best.
I sure hope you get some relief soon. You have been through so much and really need a break.
Take care....Michelle
-
As you can see, this email comes late in the day, it has been a bad one, unbeleivable pain, especially in/near my knee and it is so swollen. Went and saw a miserable doc and he said it was neuropathic pain and taake Lyrica, but after reading about it and talking to my daughter (she too is a nurse and has aptients on this drug) we agreed that this drug was not good for me. The doctor tole me that I was "too young" for this much pain, that only the elderly and very immnuosupressed or very ill patients had this amount of pain and he jsut didn't understand it." He then gave me this wierd look and I tried to explain how ill I had been for >two years (my chart was in hip lap) and he cut me off. I left in tears. My doctor is out for two months on maternity leave so I'm in a tough spot here. But, Michele, I will start taking the vitamin c tomorrow, it can't hurt. I can't beleive chelsea had it when she was so young, maybe there is a correlation. I think I'll have my husband do a search on medline. Thank you for thinking of me, Holly
-
O.K. everybody, listen up here. My husband did a search lat night on the link between shingles and AN's. There appears to be a link post-op wihich involves facial nerve and shingles. There is a sugestion out of France, I beleive that patients who have AN surgery should be given a course of antiviral meds (valtrex, acyclovir,etc,) Immediately following surgery because there is an increased incidence of shingles (along the facial nerve) during that time. It makes sense because the virus lies dormant in the ganglia of the spinal canal. Thought you should all know this. Holly
-
My neurosurgeon prescribed a ten day course of valtrex immediately before surgery. He was doing research and writing a study on herpes simplex /viral presence in the facial nerves and its relationship to viral illness after the tumor removal. This was in 2005. My PCP prescribed another course of the antiviral for the post op period.
I always keep a bottle of antiviral with me in case I feel a fever blister coming on at the tingle stage. I am very aware of the possiblity of the virus attacking my facial nerves and creating a Bell's palsy effect.
I have investigated the possiblity of getting a shingles vaccine. Medicare will not support the cost. I will have to pay top dollar for it, because my PCP will not purchase the vaccine for his patients. Secondary providers pay less than half the cost and unless the patient pays the other part the doctor cannot carry the responsibility. I will pay the $ amount out of pocket at my local pharmacy clinic...more on what it costs me, later.
It is too bad that the people who need the vaccine the most, old and immune suppressed, will are not eligible for coverage for the shingles vaccine.
-
The House clinic usually prescribes an anti viral prior to surgery. In my case, they did. Also, when my facial weakness set in two weeks post surgery, I was given another round. When a person gets Bell's Palsy, the virus is in the internal ear canal, which is why Bell's Palsy's symptoms are similar to post AN surgical weakness.
-
Hi Holly,
Sorry to read about your shingles. The way you describe the virus, comparing it to the pain of contractions..... it must be bad.
I just hope that you can get some relief soon.. You have to sleep.
I'll be thinking of you and I just hope you can get over this quick.
Patti
-
Boppie - That's awful about Medicare not covering the shot - guess they would rather pay for doctors' visits and hospitalizations (if necessary)!!! We were lucky as our carrier (BC-BS of Mass) would cover it once we turned 60. Our doctor made us sign a statement that we would pay if insurance didn't because he didn't believe the info I gave him and the good reimbursement I was quoted. I think our doctor said it would cost him $190/shot and that didn't cover administering it and materials needed (syringes, etc).
Sheryl
-
Finallly got hold of my neurologist today. My primary is still on maternity leave so my care isn't up to par to say the least. He said that I have to take Lyrica, otherwise if I don't get on top of this pain fast then I may spend a very long time, months, years or forever with npost herpetic neuropathy. He was very serious about it. That was the first time any of these docs had taken this disease seriously. In fact his tone of voice was quite earnest and I knew he meant business. So for all of you out there, he said that any of the antiviral which are given, must be given with the first signs of the disease, with or without the rash and once the rash appears the antiviral must be given as soon as possible...not four days later, it won't work. The lesions are disappearing rapidly but the pain is still close to 10. Tomorrow morning I will get my Rx of Lyrica and I'll let you all know how well it works, although it may take a few days. I hope I fall asleep for two days, I'm exhausted from the constant pain. I think anybody reading this should get the vaccine, noone would want this, we already have enough to deal with. Thank you all for all your well wishes and support. Holly
-
Sheryl,
Ordering the vial, storing, administering the shot, and needles must be a reasonable cost for the doctor. But his clerk tells me the shot costs him $280.00 (to buy).
-
Holly, The dosing directions are exactly the same for taking the antiviral for fever blisters. One has to get the dosing started at first sign of (the tingle stage).
I read some of the research on herpes virus. Wouldn't it be wonderful if a vaccine were developed to be given to children so the viruses such as herpes 1 & 2 could be irrdicated. It seems the virus could have links to many disease processes, and not so simple as Bell's Palsy and Shingles. It is not so far fetched to imagine. Babies get a dose of antiviral in the eyes at birth to prevent blindness.
-
Get this...I picked up my prescription of Lyrica today and a 15 day supply was $336.00 even with my health insurance!! I couldn't believe it. It better work but I may end up taking it for 6 months or longer. I'll let you all know if it works. Something better work 'cause I'm still "Sleepless in Vermont." I need some zzzzzzzzzzzzzzzzzzzzzz's. I told my doctor that I'm praying to the Gods of everything for some relief. The pain makes me crazed and I'm sure my poor family is suffering along with me. I will pray for all of you too that you never get this, whatever God is your God, you can be sure he's/she's on my "God Help Me" list. Here's to a good's night sleep, Holly
-
O.K. people...listen up. I was put on that new drug Lyrica about 3 weeks ago and the pain is now gone. No kidding. the drug has only been on the market for a little over a year and it is used specifically for neuropathic pain and the only drug approved for post herpetic pain(shingles). It's a miracle drug. It's not cheap but it's worth it. It's also taken away all the pain I have from fibromyalgia. I now sleep through the night, which I haven't done for 7 years. I want everyone out there suffering like me to know how good this drug is. Just don't come screaming when you see the price, it's worth it. Thanks all of you for your support. I knew this wasn't an AN issue but I knew where to go for help. Have a nice weekend. I don't know about the rest of you but we are breaking records here in Vermont, it was 77 today! No kidding. Holly
-
Holly, that's great news! If anyone deserves a good snooze, you certainly do! :D
20 bucks a day ain't cheap, the anti-virals are in that range too. But as you say, if it works, it is worth it. Take out a second mortgage if you have to.
I am glad to see you have found some relief, I have been following this post now and then, with no help to offer, but wishing that something would come through for you, and now it has. Thank goodness.
Steve