What is your oncologist telling you about the pain? Sorry, I have no idea on the shingles question.

Yes - you absolutely can have shingles without the rash. I've had it!! However, in your case it seems unlikely, since your already taking Acylavar which is frequently prescribed to treat shingles. The best way I can describe the pain I experienced with shingles is the "outside" of my body was extremely tender and even clothes touching the skin caused extreme discomfort. I have what is usually considered a high pain tolerance and putting clothes on was torture. Once I started taking the Acylavar, it cleared up in about 48 hours.

My oncologist is stumped. She sees very few MM patients, but even the "MM guru oncologist' downtown doesn't have answers for me. My pain is exactly as described by Idstarr.

I had a mild case of shingles in a tiny area over my right eye about ten years ago -- caught within the '72 hour window' for taking the anti-herpes meds -- probably was Acyclovir. After that I had the first-available shingles vaccine. Now I've been ON Acyclovir in tandem with the Velcade since June.

Separate from the MM, I have back pain that I think is where my dorsal 4/5 vertebrae are slipping. I manage that with a lidocaine pain patch. This is a sharp pain that feels like a 'bite'. It starts after I've been lying on my back for two hours overnight. It's in that impossible-to-reach place on high my back; DH has to put it in place for me. Due to the skin pain, I pretty much have to sleep in my back.

Now I am thinking it was Alisande whose shingle pain was dismissed by her MD because there was no rash. ???

If it crosses the center plane of your body it's not shingles. In other words it will stay on one side only. It won't go from left side to right side across the center plane. If it is only on one side it could be.

I had a large area of the sores from center of my back across the left hip and down the left leg but it stopped at the center of my back. I have still existing pain deep in my left hip from the post herpetic neuralgia. I apparently will have it forever. Some days are terrible and others not as bad. The weather changes affect it a lot.

You might have been thinking of me, Chisue. I had shingles without the rash in 2010. It was on the left side of my back, just below the waist. I was in a lot of pain. My doctor was in Europe, and his CNP diagnosed the pain as an abscessed colon. I refused to take the Flagyl she wanted to prescribe. Less than 24 hours later I drove myself to the ER in the middle of the night. Two doctors diagnosed me with a kidney stone, but ordered a CT scan just to be sure. Of course the scan was negative, and they sent me home.

Two days later my doctor was back, and I went to see him. When I told him how sensitive my skin was in that area, he realized I had shingles. I never did get the rash, but I was out of work for a couple of weeks with the pain and with exhaustion. I had to sleep in a chair because I couldn't lie down.

Some years later I got shingles on my eyelid, complete with rash.

I'm so sorry you have to go through this, Chisue. Are they upping your Acyclovir?

Thanks, all! I'm at the six-month point with the Velcade plus Acycolvir at 800 mg daily. I'm at the six-week point with the non-quadrant skin sensitivity "Whatever" that's all across across my midriff with no rash. My eyes are also red for the last two weeks -- left much worse, feels dry and today has what looks like broken blood vessel near the nose, and blurry vision. (Left eye needs cataract surgery. Right eye was done ten years too soon.)

My oncologist OK'd cutting the Acyclovir to 400 mg. I did that for six days; now back to 800 mg daily. (Aren't higher doses prescribed for shingles? What about for PHN?) I had trial-stopped, hoping to see improvement in the top four side effects of Acyclovir: Hair loss, blurry vision, unsteady gait, swollen foot/ankle. These all began two months into the chemo plus Acyclovir. I can live with those better than with the "Whatever" on my midriff.

So...true shingles can ONLY be quadrant? Can PHN be NON-quadrant? Should I be prescribed MORE ACYCLOVIR? (And buy that wig?)

Doctors are not tracing any of the "Whatever" to the MM itself, although frontal floating ribs are sore behind the skin sensitivity. I have weekly blood tests -- all normal or close enough. The IgG marker for MM has come down from 6000 to 1100, although my M-Spike seems to have plateaued at 0.8. 0.0 is normal; I presented with 3.5. I see the MM guru Feb. 18. She will possibly stop the weekly shot of Velcade plus 5 mg dexamethasone to oral meds: Revlimid, which does not 'come with' a prescription for Acyclovir -- but maybe I'd still require it for the "Whatever"?

Hoping Hard to see the end of the "Whatever" in another week. Ah, but that's the *shingles* duration... PHN can go on forever. Blech.

I appreciate anyone willing to read my 'saga' and comment. Just discussing it with you KT friends is a real help when 'nothing fits' from online medical sites and my doctors are also 'guessing'. I sure never wanted to be 'an interesting case'.

Actually it is possible to have shingles that cross the midline, and shingles without a rash. There is also the possibility of disseminated shingles, most particularly when immune suppressed, which can turn into quite a serious situation.

Your MD should probably consult with an infectious disease specialist.

There used to be an old wives tale that if your shingles met by going all the way round your body you would die.

Shingles is an inflammation of your nerves by the Chicken Pox virus that hides out in your body and follows the nerves out to the skin. I wanted to check and make sure I wasn't passing on bad information and learned to my astonishment that while you have the open blisters you can give someone Chicken Pox if they arent immune and contact the fluid from your sores. As in Yipes. I always heard Shingles weren't contagious and of course Shingles isn't as it is essentially a symptom.

It is also possible to have airborne transmission of the virus. Any patient in my hospital who is immune suppressed and has shingles is placed in both contact (gloves and gown worn in the room) and airborne isolation (requires a mask also). The thought is that patients with intact immune systems are much less likely to shed virus via their respiratory tract (unlike with chicken pox, which is respiratory spread) so contact isolation is sufficient for them.

I am 2 months into my bout with shingles. Had 3 days of malaise and intestinal distress. Then a small patch of painful red rash formed at 6 PM. By midnight it was dollar bill sized. Saw Doctor in a.m. and the rash was from mid back to front rib cage, however, I also had a sunburn-like redness that had spread in a 6" wide swath all around to my front centerline, and all the way down my buttocks and curved from the side down my left leg. I started on anti-viral for 7 days. The rash area just mentioned did blister, but the area that was just redness never blistered. My doctor felt that the redness area would have blistered without the anti-viral.

Surface pain horrendous-could not wear anything with waistbands or "rough" fabric. Used very soft t-shirts under floaty dresses. Had severe leg weakness on left side. Had it internally too. Left side intestinal tract was cramping horribly and could not tolerate anything spicy. You could see my abdomen jumping around like I was pregnant! Lived on cottage cheese, bread, potatoes, and ice cream bars for over a month.

Blisters dried and came off in two weeks, but pain was intense for a month, and is tolerable 2 months later. Don't think I would have survived without Gabapentin used for herpetic neuralgia.

What's the good side to this? Well, now my doctor thinks my previously undiagnosed right side leg pain and weakness was from a bout of shingles four years ago that presented without rash, but with only skin redness over the nerve area on the right leg (just like the redness this time on my left keg.) That bout caused the corresponding muscle to Charlie-horse for 6 hours, causing muscle damage. I've had continuing pain since then and have to use a cane for balance and leg weakness.

Raven, I know what you are going through!

Loonlake and other shingles sufferers, you have my sympathy! And Chisue, you didn't need this, that's for sure.

I'd thought maybe a neurologist...but infectious disease?

My oncologist says my weekly blood tests are normal. There are no sores to scrape/sample. This whole affected area around my midriff is where a watery-flabby area developed within a month of starting the Velcade in June.

They started Velcade weekly at 1.9 mg with 40 mg dexamethasone. Now it's 1.5 mg for the Velcade and 20 mg dex. I'm on 800 mg Acyclovir. I'm taking Tylenol #4 for pain as often as every four hours. I use a 4% lidocaine patch on my 4/5 vertebra as needed. Last week's MRI surveyed skull to pelvis directed to the MM lesions; nothing helpful seen regarding this pain.

My chickenpox was severe. I couldn't walk until one pustule on the outside of my right knee healed. I still have the dime-size scar. I was delirious. Long recovery. Over 70 years ago -- my pediatrician made house calls!

loonlake and raven -- I have even greater sympathy for you! Had either of you had the shingles vaccine? (I had just one earlier one -- not the most recent, more effective one.)

No vaccine yet. Just turned 60 and was going to get it but the vaccine is backlogged in our area.

Yep, ID docs know probably know the most about diagnosing and treating this infectious disease. It isn't a neurology problem, even though it involves nerve roots. If this problem is indeed shingles, which the ID doc can help determine.

I am learning new things raee. Thank you.

When I first met my now DH he told me one day he had this weird feeling on his side, sensitive and painful. I had him pull up his shirt and he had by that point a red area. Though I had never actually seen shingles I did pay attention to details about it and immediately said go to the doctor. He got a shot and it very much limited the rash. He was off work for two or three weeks. It was a wow for me. I have been at high risk this past year so looked it up again.

Thank you all.

Raee -- I am going to forward Infectious Disease, not Neurology, to both my oncologist and my internist.

Still puzzled why my internist never told me I was percolating multiple myeloma for three years (MGUS -- 2200 IgG). I had to push her to do blood testing -- result was 6000 IgG. I was complaining about malaise and brain fog for 18 months.

Chisue, I am so sorry to hear that (on top of the actual diagnosis) !! Every time I hear something like that, I think of my poor step mother who was complaining to her internist about her symptoms and kept being told that it was "just stress" -- no, it was cancer and metastasized by the time he made any effort to really diagnose it. And do you know she wouldn't change MDs in spite of that? And put that same MD in charge of my father's care.

So I do wonder if your internist will take this seriously. I hope so. Of course it could be nothing significant but why take the chance?

Raee -- Primary MD says I have no infection -- nothing in blood tests.

I tried the gabapentin (300 mg) last night. I woke several times during the night -- not unusual, but each time I was in exactly the same position I'd been in when I went to sleep. I felt 'anesthetized'. I was also slightly short of breath. I'll give it more time, but don't think this is going to be a good fit. This was prescribed by my oncologist. Primary has suggested duloxetine instead.

DH has delved into the internet and come up with intercostal neuralgia, which seems logical.