Shingles without the rash

Hi hazel.your story sounds familiar here, now wondering if it's what I have, twelve weeks ago like you felt bit off colour, slight ear a he sore throat, then it went off couple of days then chest pains started, and dry cough and very tight chest, pains under arm and shoulders, under should blade also , been tested for embolism, asthma , infection, acid, they have decided it's acid, I know it's not, different pains, so breathless with pain too, but have no rash, breast been really swollen feeling and hot, feel very worn out with it,  now today my three grandsons whom I have a lot have all gone down with chickenpox x

Hi gwendapolly, I think your grandchildren caught the chickenpox from you so you definitely have shingles.  Get the doc to test for shingles...I got the antivirals and this cleared the pain but I did have ONE SPOT, all that pain for just one spot, Ithink myself lucky not to have had a rash,  but it makesme wonder where it is lying dormant just to try again!

Hi hazel , I think you could be right you know,I damaged a nerve five years ago lifting a cupboard and got shingles in the nerve ended up in hospital for nearly 6 weeks with it, the pain was worse than childbirth, I  had four children naturally so I know.  I was begging at one point for them to put me to sleep literally I wanted to die......I have suffered pain ever since in those two nerves, and this is the exact same place. I thought it had jus flared up again, doing too much as it does, but it have had such problems breathing with it, and flu like symptons initially too, yesterday was first day in twelve weeks I actually breathed easier, the same day as my three grandsons came out in spots, how weird is that, today not been too bad til this evening, bit tight chested again, boys getting spottier poor loves, feel awful that they may have caught it from me,   As I have had this for soo long do you think any point going back to doc, prob nothing they can give any way, certainly no help when I was in hospital five years ago other that I've morphine, opiates of all sorts, which made me feel ill with all side effects, it is a horrible thing, but I think you are right  thankyou x

Hi. I had to write to you after seeing your post. I am currently having some of the same symptoms burning pain on my should blade pain under my arm and breast. My breast feels swollen too. Also I feel like I got punched in the back. My stomache hurts, nausea, bloat,and just feelin horrible. I'm taking valcyclvir and tramadol. I think I need more for the pain. 

Hi, I've just read your post because I have odd pains which eventually a consultant diagnosed as polymyalgia. The worst of it was a particular area on my back at waist level, left side which was so tender, I couldn't bear anything touching it. I was prescribed prednisolone (steroids) and it disappeared like a miracle. I still have other pain but so much less so and still taking steroids but tapering the dose gradually. My GP thinks it is connected to shingles even tho I've never had a rash. He's not convinceed it is polymyalgia as my pain is in the waist area and not, typically with polymyalgia in the shoulders and pelvis. Hope this helps.

I had the same thing -- I was on gabapentin and it eventually went away. I though it was neuropathy from my diabetes. 7 years later I got this horrible pain on my left side, back belly, which switched to the right. The gabapentin did not work, no did the antidepressants. Only methadone has helped, though after 8 months, it's back, but not as bad. Ask your doc about methadone. It gave me back my life.

Hi, terry1944 ~ You have had your recent event for eight weeks = 56 days.  My last event lasted exactly 61 days ~ May 20 - to July 20 ~ and it left as quickly as it had started.  I would hope that your event will soon be over.

    My recent event began suddenly about mid-day on May 20 for no reason at all.  I could not put weight on my left hip and any effort to force it to function was excruciating.  It lasted like that, with no relief, for the 61 days.  Suddenly, on July 20, my left hip was functional and I could walk without any pain at all ~ not a twinge.  At the mid-point,June 28, I was virtually stranded at an airport, unable to move my left leg for 30 minutes.  My doctor, the people at the hospital emergency, the x-ray personnel, all of the medical people I questioned could not explain it ~ and none of them suggested shingles!

   The problem with non-rash shingles is to insist to the medical staff, from our many personal past experiences, that this is shingles and to request, quickly, the Valocyclovir to prevent the rash from developing ~ and to stop the pain at its onset.  None of us would willingly go through 61 days of debilitating pain only to have hind-sight tell us that it was shingles ~ again!

   I hope that you are soon better ~ my thoughts are with you, Terry, and all of the others who are still suffering.

Good morning Susan:

Thank you very much for your candieness; I really appreciate it. You and others have given me great insight into the illness... would that more doctors realize that Shingles can present itself in a rashless form.

By way of example, I have spoken to three retired doctors who live in our condominium and NONE of them have ever heard of (invisible) shingles; and as a result, each suggested that my illness must be something more serious. That prompted me to go to my doctor again to request a second opinion. Needless to say, the second diagnosis confirmed that I have Shingles. Please know Susan that I shall try to remain optimistic and hope that this bout of the virus will leave my body soon. 

 

Hi, I too have had only one spot in this bout of shingles.  I went to the Doc on Monday, saw another doctor than usual who didn't think I had shigles and requested a full blood test which I had yesterday.  Results not known until late next week.  In these results will be my T2 diabeties bloods.   I couldn't have the injection now on offer to 70 year olds, as I was out of the age range but not old enough for the 79 age group...go figure...we get ill and have to take what medicine we get.  Luckily I have no pain but dreadfully itchy skin but don't feel my usual 100% , get very tired and quite emotional.

Hi terry1944 ~ I was talking to friends today and there seems to be a consensus that the strain of chickenpox which swept through Europe in the early 1940s has resulted in quite a harvest of shingles among those of us who were there and had it (chickenpox) at that time as children.  My first event (2002 with blisters) lasted about 90 days and the neural pain is still with me, though considerably diminished.

     Doctors who do not have a personal history of shingles often are not very well educated in that area ~ and, let's face it, most of us are still struggling and learning about it through forums like this.  Doctors do not put a lot of credence into lay-forums, preferring to rely on what they were taught at med-school about shingles ~ which was not much ~ as very little is known or printed in their text-books about it.

     Terry ~ optimism is the back-bone of my life ~ and I am fortunate to be that way.  I always try to keep up with my occupations despite the shingles ~ hoping that I will ~ eventually ~ be rid of it "in a few days".

     I hope that you will also be rid of it in a few days.

Hi hazel14959 ~ If the results will not be known until late next week, you will not be able to use the anti-viral Valocyclovir to prevent the rash.  You have to start it within four days.  Doctors have to learn to recognize the initial symptoms and have the courage to trust the patient's self-knowledge.

     In Canada, we can have the vaccine whenever we want it ~ but we do have to pay $185.00 for it.  I cannot understand the English system of 70 or 79 ~ take it or miss it ~ which seems very cruel.  I wonder about your absence of pain ~ but then I am also still learning about the different varieties of symptom presentations.  Perhaps there is a "painless" variety ~ ?  Perhaps the itch will be found to be from somethng else, in which case the blood test will have been useful.

     I am now 77 but had my first event at 65 ~ I now have four events "to my credit" ~ and apparently I cannot get the vaccine until one year has passed since the last event.  I have an appointment with my Doctor to find out what would happen if I took the vaccine with less than one year since the last event.

    Will you keep us posted ~ please?

Hello Susan,   The problem was I had the pain, and only one spot, no other rash.  This was the same as the first bout of shingles 39 years ago, but that was in my head and I thought the spot was a bite from being in the garden, I treated it with my own cream and it turned septic so I had to go to see the doc...who took one look and diagnosed shingles. The second bout was around my middle with a rash.  This time, horrendous pain but as I said only one spot.   I have had antivirals which might has stopped the rash as I had these the next day following the pain.  Anyway we shall see what the test bring up and I will let you know on here...

fingers crossed nothing nasty will turn up.

 

Hi hazel14959 ~ you were one of the smart ones and went for the anit-viral right away.

     I always have blamed garden insects for the rash but I know now that they are very different ~ fool me once, etc ~  ~ however, that misinterpretation has cost me two ugly bouts with shingles.

     Good luck on the tests ~

Hi I'm 34 years old and for the last two weeks I started to feel burning feeling in my back but now I'm feeling in my breast area as we'll. it's very uncomfortable to wear a bra or even lay down but I don't have a rash all I had was about 15 bites that look like bug bites.  Could this be shingles. 

Hi, Rebecca ~ I have just posted a reply to the request which you sent to me.  The bra thing ~ oh, yes ~ I had that and had to change my bra to the style which closes at the front, as I could not do the usual ~ fasten the back at the front and then twist it behind me ~ as most of us do.  My guess would be that it is indeed shingles.  When I has shingles at that area, it stretched from the centre back, on the left side, right around to the line between the two breasts.  If yours has not done that yet, then good for you, as shingles blisters on the breast is agony.  Not only that, but the pain inside the breast felt like 16 pairs of scissors criss-crossing through the interior.  I still have (13 years later) about 2 pairs of scissors in there and I must never let that breast get chilled.  This shingles is a really beastly ~ but ignored ~ affliction.  Talk about it ~ tell people ~ make sure that family and friends know that 4 days is the critical diagnosis time to get the anti-viral.  Good Luck from Susan

I have been told by more than one Dr. And Pharmasist that once you have had shingles, that the vaccine won't help. Do tell if you have heard otherwise. 

Hi Staceyb4

Actually there are quite a few Dr.'s that live in my building and they have said that after the symptoms have left wait around 4 months and then get your shingles shot. This was also confirmed by my physician who has been treating me. I still have shingles but not as painful as back in August. 

I do have a constant pain that seems to attack my right arm muscle that sometimes I can't even lift my arm over my head to wash my hair when showering. Shingles are very frustrating, I go down to my exercise room to lift weights to prevent the possibility of muscle damage to my right arm. I have no problem lifting the weights. The next morning the pain returns in my arm. I think I slept through the night 3 times since August, the rest of the times I have been awakened by sharp jabbing pain.

The best way to descibe shingles to anyone that has not had this pain is to say, "If you were to put a thorny log into a burning fire, remove the log when you see the hot coals and then place the log on your back, on your side pushing the thorns into your skin." If your friends can visual that, then they know how much pain and suffering shingles is.

Hi Terry- thank you for your description. My 35 yr old husband has been suffering with the same pain under his left shoulder blade for 3yrs. I'm sure he has shingles without the rash. It's getting worse. Time to get a different Dr.

God Bless all

Teresa

Best of luck to your husband. I had shingles without a rash when I was pregnant with my daughter over 8 years ago. Didn't get treated until after 3 months of symptoms.

Well after 6 years of going to doctors getting every test done, one finally diagnosed me with post-herpetic neuralgia. I've had every pill out there for treatment of PHN, injections, creams, patches, physical therapy, & most recently a spinal cord stimulator. I would say I was so desperate to get rid of this pain after dealing with it for well over 7 years by the time I opted for the surgery, I was blinded to what I was agreeing to. It may just be that I'm a very slow healer, or this stimulator isn't meant for me. It's like having an internal tens unit, but my quality of life has declined as it has caused more pain for me to worry about, including not much relief of my PHN.

I'm 31, mother to a 7/almost 8 year old, that has no energy every day. I'm so exhausted & wish there were more options out there, or that I didn't have this debilitating pain every day. So best of luck to your husband. Because if he's had pain for 3 years, I don't foresee it going anywhere unless he had a great doctor who is knowledgeable in this category. Keep its posted please.

Apologies for a very late reply.  It was shingles I had.   I have also had a TKR this March so not been in the best of health since shingles.

 

I have this (have had this) severely a long time now. At first it was on n off, then a few months later, worse pain, and NOT GOING AWAY!   My left arm gets so bad I cannot use it even at times. My entire left side gets completely untouchable from butt to neck, belly button to spine, even to blankets. Showers are like a thousand needles. But it also moves to other areas at random in addition, and the other side. Even both my butt cheeks, and part of my legs at times, my groin area? But it ravages my left side unmercifully. The pain is unending. I get 240 hydrocodone 5's a month. They do not touch this at all. I had 3 treatments of the meds for shingles in a row, plus something the ER gave me to clear it up last time. Even then 1 area under the ribs never totally faded. Already a victim of chronic pain? I thought I could take anything, but I am in HELL unending now. I am a veteran, and the VA now says "it's not normal to get shingles so often, and not responsive with a treatment". So now? No more shingles meds. More test in a month, or so of my guts "did time, and time again". Basically? I am now eating anything/everything I can get for pain "even aspirine". I take so much junk my kidneys hurt a lot of times. I am already diabetic on insulin. Kidney toxins, is a bad thing. I think the VA wants to kill me to save money.... I am not old enough to get the shot. VA says 61. I am 51 going on 85.... This is making my health drop exremely rapidly. I get no sleep at all now pretty much. "was bad enough before this newer torture. Stress amplifies. Temper is very hard to control. I have to fight snapping, and anger at everyone. I feel like a tortured animal! My other pained areas non shingle related are worsening. My heart flutters. It even affects my bowels when this bad. It hurts so bad. I guess it is a good thing I am 1 of a few who still believes in God, and hell. I am not living like a christian, and in no hurry to die. Otherwise it would be a relief! As far as this returning? I have this more, more often, and severe, and now? It isn't going away. No treatment is given whatsoever for this in way over a month now. You ALL have my sympathy. Life=torture now. It was bad enough with my other pain. That made my eyes water. This pushes a battle for sanity... combined with my other problems.The pain truly is hell. I understand the (no money) to. I Cannot even afford medical. I have only the VA medical center, and emergent care.God have mercy on us all....

 

Also? Veterans are not allowed to get anything whatsoever for pain from anyone but the VA now if you use the VA. So anyone know any natural remedies? I will eat a dead skunk if it has verified results. Sorry if I sound erratic. I can't hardly even think to type.

Best regards, Johhny

 

Dear Johnny,

As a fellow Herpes Zoster-Shingles sufferer, I understand the severity and type of pain you have. The Zostavax vaccine is approved for individuals who are over the age of 50 years. There is no reason why they should be holding back on giving it to you. That being said, it often does not work on people who are suffering with Post Herpetic Neuralgia.

It sounds like you should be on a combination of medications to control the chronic pain such as Cymbalta, Carbamazine, and Gabapentin. You should get a referral to see a neurologist as they know how to treat neuropathic pain. With the diabetes and kidney diseases, the physician would have to be knowledgeable regarding these medications and effects on liver and kidneys.

Also, Google Arginine/Lysine diet and Herpes Zoster-Shingles. You will discover that certain foods trigger Herpes Zoster-Shingles, and some are more protective. When I gorge on nuts, my episodes are much worse than usual, which are severe anyway. You need to eat foods that are high in Arginine and low in Lysine. Please don't take the Arginine supplements as they can cause kidney damage.

I know the VA system is whacked up, and you deserve to get excellent health care. Which state do you live in Johnny? If the physician refuses to give you a referral for a neurologist, if you call your US Senator and House of Representative, and ask them to inquire about your lack of care there, believe me, they will pay attention to your needs.

Please let me know if the suggestions work.

I did work in a USAH IN GERMANY as a Nurse for six years with the NATO FORCES, EUSEREUR COMMAND.

I have recurrent Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye.

Best regards

Merry Juliana

I am in West Virginia again. Illness drove me home finally. My doctor is very kind. He talks to me like an every day fellow soldier, not a unemotional, paying client. Like so many do. He helped me so much to get mobile again previously. He truly seems to care. He talked me into insulin. My sugar was averaging 400-600. Thanks to him? After years of not even knowing til it damages things? I am now averaging 105-215 but for some reason he thinks repeatedly giving me acyclovir 800 mg tablets is bad. "the pharmecist said people with herpes take it regularly".  The pharmacist is also the one who said I cannot get the shot til I am 61. He gets shigles as well he said. So I am confused. Sometimes it even feels like my insides are crawling, and the only relief? Is exhaustive sleep on increasingly rarer occasions. But when I get up, and move around? It is like opening wounds and the pain level starts climbing immediatley. My other problems will not allow me to "lay still in bed" hours awake. That pain drives me out of bed. I am already on pregabalin for neuropathy, 800 mg ibuprophen, hydrocodone, and cyclobenzaprine. They are not stopping this. "I am taking so many things to try to get relief. I am exceeding my allowance of hydrocode even, and will run out early. I hate taking meds as it is. But this pain? Is destroying my common sense. That pain I already had? I adjusted into, to a degree over time. To at least a livable level with my meds help, but this? Showering is torture even. Using the bathroom, sitting, bending, everything pretty much. Noone can touch me. I sit around as naked as I can at home. Cloths are agonizing. At times I have to sit on a pile of soft things, and it still hurts. Does any of the things they want diabetics to eat with insulin to prevent rapid drops make this worse? Like peanut butter, etc? TBH? Not sure what Arginine, or Lysine are. Will have to google around when I can sit up longer in this hard chair. At the moment I am having a time with it. I am exhausted, and all my pais are combining presently due to the stress. Sorry, not trying to complain. I just... got not ideal what to do. Writing to a US Senate would simply get an overworked, kind natured doctor in trouble. I truly don't want to hurt him. He is a 2 war veteran medic, and treats his patients with respect. He just seems totally against giving me repeated dosages of the needed med for some reason I do not understand.

Is it hard on your kidneys, or liver maybe? Both of mine are on the rough side it seems. Herbal? So hard to find herbal remedy info these days. Anything herbal you know of? Will most likely be up all night again. Need out of this chair, but will check back for replies when I can, and thank you for taking time to reply. I understand, and empathize with your pain. Fortunately for me, it has left my head alone so far. It's the only thing that doesn't hurt pretty much from 1 thing, or another. Except when I get migrains. So I can at least be grateful it isn't in my head yet.

 

Actually too many antivirals cause kidney damage so I understand his reluctance. I wouldn't call the Senator etc. either. I am glad you have a wonderful caring physician. My father was a physician in WWII and my mother was a nurse on a hospital train during the Battle of the Bulge, the Rhineland Campaign under Omar Bradley. They were caring people who served humanity.

See if the kind physician can prescribe Cymbalta for your pain.

You are in my thoughts......

Best wishes

Merry Juliana

I see him the 28th. Seems like an eternity away, but I will definately ask him about Cymbalta. Hats of to you, and your family for your service for our countries. Thank you.

I meant "hats off". Sorry about the typo. I am looking into the arginine, and lysine a bit today. TY for the info as well.

 

Great,

Being proactive helps your mood, even a little, and while I am not a health food fanatic, I know that eating hi Arginine, low Lysine Diet helps me..I also have peripheral neuropathy and am on Topamax for Migraines. I haven't had a migraine in ten years. Also a little known side effect of Topamax, very important, is that it often causes the feet to have numbness and numbs neuropathic pain. My feet used to burn like crazy and now they no hurt at all. It also decreases the severity of the neuropathic pain I have during the recurrent Herpes Zoster-Shingles episodes every three to five weeks. Of course your physician has to prescribe it knowing your entire medical history, the contraindicated medications, etc.

Again,

Best regards

Merry Juliana

So shingles intensifies all neuropathic pain? That would explain why my fingers, and toes burn a LOT lately. I have a double whammy. I have neuropathy in both hands, 1 side of both arms up to the elbow, as well as i both feet, and on 1 thigh. Actually? They thought the shingles was diabetic neuropathy at first til it started speading across my torso, butt, and chest, then into 1 shoulder. I understand the unpleasantness in fingers, and toes very well. Also? You tend to drop things easily, or I do, and have to watch your feet, and shins very closely. They injure easily, and even though they hurt in the way you described? An actual sore, or injury goes unfelt often. I don't see pefectly either "depth percertion is whacked. lol" My shins burn like fire if I accidently peel a shin, or tear the skin, but a jab, or cut? Often I know only by the blood trail. They used to infect very rapidly if peeled,  and had water blisters all over them, that made the skin burst. This was before they figgured out I have diabeties, and the skin is scarred from it., but I found then, and now when they get injured dousing with rubbing alcohol (at times if very bad even rubbing it in til it permeates the wound), several times for a couple of days both dries them, and stops the infection. It actually kinda numbs the burning as well. Sharp pain, followed by sweet relief. lol More than a few times though I have looked to find a shin bleeding with a cut, or poke, or an area on a toe from brushing something unknowingly, or a shoe rubbing has created a sore. I worked in burnt asbestos powder in the military several years, and smoked since 11. Had severe heat stroke, as well as a minor stroke, and my eyes are damaged some from diabeties as well. (1 lost the ability to even move for almost a year) "neuropathic damage to the eyes muscle from the brain to the eye", and still doesn't move well with the other. It was explained to me it has to grow back, and usually it recovers, but not always, or like in my case? Partially. This causes headaches at times as well. I have degenerative spine, and a curved neck. My teeth are beaking to bits a little at a time "not covered, not considered a medical necessity" I had years of insane toothaches til molars finally broke to the gums (pulled shards with pliers often) Now I soak my mouth dialy with whiskey, and they no longer hurt as bad, or as often. Just when chewing. I was sad to lose them "triple roots, would have never fell out, but no money for them most roots are still in there. But I can walk, see enough to function. I don't need help bathing, and such, and can cook when not too sick to eat. I am not getting my bottom wiped by someone else. So I suppose I could be worse off. I am still alive. Though as you know? At times you question the "goodness" of that. (you got to laugh? it helps to maintain some degree of sanity while being tortured) lol

It sounds like the diabetes and the injuries to your spine have caused the neuropathic pain. Shingles causes Neuralgia only where it strikes, not everywhere else, but the diabetes Neuralgia and the shingles Neuralgia is the game. Same nerve pain. When you suffer, the same medications takes care of both problems...I have to go to sleep now Johnny

Good night

Merry Juliana

Have both. Was finally confirmed at an Hospital in Spring Hill. And some of the neuropathy is not usually permanant. This time it is untreated, so is driving me crazy. But yes. The pain of both is terrible. Can't sleep, and saw your reply. I never told anyone this stuff, and rarely type as it is tedious for me, and messes with my eyes. MNaybe I just needed to voice it all 1 time. I am not sure. Anyways, thank you for the many good ideas, and recommendations. Also for taking the time to read what I see was really long messages. Sorry about that. May you have a peaceful, low pain rest. Nite nite.

 

Not going to type a lot. Too msick, and tomented non stop last 2 days to try, and said enough already. Cant stay up. "There is "always" worse it seems. Praying for you guys. Pray for me if you do. nite nite

 

Dear Johnny,

I am sorry you are having a really bad day...

Please know that you are in my thoughts....

Best wishes

Merry Juliana

Trying to eat things with argiinine, and low on lysine but hardm atm. taking vitiman b supplememts. It isstill staying realy bad. TY, for everything. I don't need ti post about this anymore. Nothing new i can add. I will read what others treid wgen I am up to it. Feel dog sick still atm. Have anice day everyone..

 

You too Johnny!

Hi Marry, You've been giving terrific advice; I hope you are still around!  I am a U.S. citizen currently living in Australia.  Came down with horrible pain 10 days ago.  First in the evening I thought it was extreme muscle spasms in my back (I am no stranger to stress related back spasms) and over my ribs on the right side, but at 4:30 am I woke to unbearable, strange, somewhat stabbing and sort of burning pain.  The best way to explain is that in two places - one just below the shoulder blade in the middle of the right side of my back, and the other over my rib on the side just below the breast - it felt like a giant tooth on each spot, the size of my fist with unbearable and relentless toothache.  I took three Penadol Rapid tablets (it is like Tylenol in the U.S.) and they did nothing.  Then I went for an hour walk, which made the pain somewhat bearable, but still extreme.  Upon my return, I took a shower and noticed a large area (size of my palm) red and swollen over my rib area on the right, halfway to my back.  This was on Sunday, so I went into the emergency at the hospital, which is across the street from where I live.  The doctor there said that it might be shingles, or an infection.  He prescribed Amoxicillin and said to watch for blisters, and then stop the Amoxicillin and get an anti-viral prescription.  After taking two of the Amoxicillin tablets, the redness and swelling went away, but the pain intensified, so at 11:30 pm, I went back to the hospital.  Took 10 hours to see a doctor, in a teaching hospital.  The young doctor sought out a spine specialist, who told me that with my history of back spasms and two degenerated disks, plus what he interpreted as reduced sensitivity on the right side, I probably had some kind of a pinched nerve (he mentioned the condition, but I don't remember) that could only be fixed with surgery.  He suggested an MRI.  Meanwhile, I could not sit, could not lay down, and could not sleep.  By the time I left the hospital, I did not sleep for some 30 hours and mostly was standing, because sitting made the pain worse.  The doctor prescribed Lyrica (2x daily) and Penadeine Forte (paracetamol + 30 mg of codeine, two pills 3x per day).  The pills knocked me out, but did not fully take away the pain.  I also was continuing with the Amoxicillin.  I also got edema in my legs (and subsequently constipation) The pain continued with the meds just barely taking the edge off.  The next day, I developed a rash in a small area over my rib.  Went back to the hospital, but the woman doctor treated me as a pain in the ass, and told me to just keep on taking the medication.  The next day, the rash spread all over my side, and this time, the same female doctor finally diagnosed shingles (actually the nurse immediately recognized it as such) and they gave me the anti-viral Famciclovir (one right in the hospital at 3 am) and a prescription for more Lyrica and Penadeine Forte with codeine.  I got the prescription filled the next afternoon, and after the second doze, plus the pain killers, my pain level went down from a constant 7-8 to a 1-2.  I was able to sit and sleep for the first time in four plus days.  (I took care of the initial constipation with an enema, and have not had any more problems)  Interestingly, after the third time I took the cocktail of Lyrica and Penadeine Forte, it no longer knocked me out, although I remained pretty sleepy all the time; sleeping about 14 hours a day...  Sorry for the long description, but I wanted to be precise!  My question now is: Did I take the anti-viral in time?  Is the fact that I seem to be responding to it an indication that it is effective or it just helps with the pain?  Should I worry about addiction with these medications?  How long is too long to take them, and should I cut back, even if I have to bear the pain?  I am taking the pain killers and the anti-viral every eight (8) hours and the Lyrica twice a day (altogether 180 mg of codeine per day). Thank you very much in advance for your response!  Livia  P.S. - Perhaps I should tell you, that I also have SVT (supra ventricular tachycardia) and had a very bad episode a month ago.  For 55 minutes a team of doctors and nurses (5 in all) worked on me - was given Adenosine 60, 120, and 180, (all three dozes; none worked) then magnesium, and other stuff to stop the 220 - 250 irregular heart beat.  Blood pressure was 175/138.  They said I went into A-fib, but later was told that there is no sign of A-fib...  Finally it slowed and I was transferred to Critical Care in the Cardio Ward for three days...  Over-medicated, and a student doctor double dozing me on beta blockers, I had a heart rate of 41-43 for two days...   Don't seem to have any heart damage, though...

Dear Livia,

I am so sorry you are going through this disease.

To answer your questions, you received the Famciclovir in time. The antiviral stops the virus from replicating such that the pain is not as intense, nor the duration as long. I am glad you have a heavy dose of the codeine plus Lyrica to help with the pain.

My feeling regarding the severe pain of Herpes Zoster Shingles is that it needs to be treated so the patient does not suffer. Otherwise, the patient runs the risk of developing Post Herpetic Neuralgia PHN and/ or recurrent episodes of Herpes Zoster Shingles.

People do not develop substance abuse for using Codeine for two or three weeks for severe pain. When your pain decreases, decrease the dose of the codeine, not the frequency of the Codeine.

Also, you will have accompanying symptoms of fatigue and exhaustion. You need to rest and sleep. You can not power through this...Activity and exercise makes the pain far worse.

Some people like Solarcaine with Aloe Vera. Others find cool compresses or ice wrapped with cloth on the rash helps. Heat usually intensifies the pain.

It is difficult to state for certain, but I would say that the antiviral is being effective in reducing the pain now, but not in the beginning. Taking the Codeine as prescribed with the Lyrica has helped you with good analgesia control more than anything.

Regarding titrating down, you can attempt two weeks after the rash appeared the following: decrease one 30 mg Codeine tablet in the afternoon. 60-30-60...

If you still have significant pain, you can still take another pill.

The worst pain is usually at night, and that is the last set of pills to decrease. The schedule might be something like this:

60 30 60

30 30 60

30 30 30

30-----30

--------30

As needed for pain

I hope this helps you.

I too have supraventriculartachycardia. I have taken Propranolol for 45 years for it. I also have A fib.

Adenosine can cause a transient rise in BP and A fib.

(I was an ICU nurse.) A heart rate in the forties won't kill you, btw.

May I ask your age?

I am 65.

Best Wishes

Merry Juliana

Thank you so much Merry!  You are terrific!!!  I will be 63 on October 7th.  Interestingly, I keep reading about, and you too made a reference to pain at the site of the rash.  I had NO pain whatsoever on the skin surface, just a slight weird sensation that turned into itching a few days after I started the anti-viral.  The pain feels as it is much deeper in the tissue and even in the bones, not necessarily at the site/around/beneath the rash.  I use Neosporin on it, and it seems to make it better.  Also:  Although I saw a just few small early blisters, I never really blistered-up and there was no icky-sticky stuff, as I had previously behind my knew about 12 years ago.  This was more about the pain that was pretty bad...  In addition, I just ran out of Penadine Forte.  I still have plenty of Lyrica.  I wonder if I can just stop taking the Penadine Forte and replace it with regular Penadol Rapid and keep taking Lyrica.  Can one just stop taking codeine like that?  Thank you so much for your extensive response!!!!  Livia

Hi Livia!

You can try stopping the Codeine, but you may experience significant pain .

If the pain is not controlled, I would get another prescription of Codeine. You can go off Opioids rapidly, but it is wiser to taper off as you have a smoother transition. You might feel slightly anxious, jittery, or sweaty, and have difficulty sleeping. (You were not on them very long.) (Minor withdrawals)

You are correct that the pain really is deep. It is neuropathic pain, emanating from the sensory nerve root fibers in the thorax, in your specific circumstance.

Merry Juliana

Thank you!  I will see how it goes with the pain...  Will let you know!  Really appreciate your feedback!!!

 

Hi Merry Juliana,

Just wanted to report back to you, as I appreciated your help so much when I really needed someone giving me sound advice!

It has been about six weeks since my first symptoms...  I am one of the lucky ones.  It seems that I was given the anti-viral in time for it to do its job.  After about a week or so, soon after I started the meds, the rash started itching severely, which I knew was good news, as no doubt, it was a sign that the healing commenced.  I stayed on the Lyrica (2x per day) for four weeks.  I tried to go off the Panadeine Forte (Codeine) but, exactly as you said, I became very anxious, and could not sleep (normally never a problem for me).  So, I got another prescription, but cut back to four pills from six after the first 2 weeks, to three, two, and then one, until stopped completely just a few days ago. 

The pain is completely gone, but I get an occasional sudden and deep itching sporadically during the day, and more during the night.  The Neosprorin was not really working well on the itching, so I use some Lidocaine gel sparingly as needed when it gets bad.  There are still dark markings where the rash was on my right side over my ribs - it is quite ugly, so I hope it will fade, but I am grateful that it, along with some itching are my biggest problems.  

Some advise to others:  I could have started the anti-viral four days before, if the shingles was identified then.  As I learned it is not necessarily from the first symptom (pain), but from the first rash, that the medication must be started (within 72 hours) in time for it to work.  Still, I wonder if I could have suffered less...  

From what I understand, there is not any harm in starting the anti-viral even if it turns out not to be shingles.  If you and your doctor suspect that it could be shingles, I would insist on the medication immediately.  My doctor suggested it the first day, but since there was redness, but no blisters, he was not 100%, and gave me antibiotic instead for infection...  (That was weird...  Who has an infection the size of their palm over their ribs???)  

Anyway, thank you for all your good advice and support!

Best,

Livia

 

Dear Livia,

I am glad to hear that you are recovering from the shingles episode. The scarring from the rash will fade in time. Shingles is such a difficult disease to experience, and most physicians of today do not understand the severity of the pain and accompanying disabling symptoms.

Best Wishes to you,

Merry Juliana