Neuropathy, shingles, something else? Sorrry Long Post

[mariannebreathes]

Hi Everyone,

I know I don't post often though I tend to lurk alot.

My 5th round of Cisplatin and Etoposide is coming up on July 14th.

On July 5th I noticed my fingertips were tingling- the next day the soles

of my feet were burning. Called oncology = dr. on call called back

and said sounds like Neuropathy- talk to you reg onc about getting lyrica

or neurontin.

Called Office monday and was called back by a nurse to

take Magnesium Oxide.

Called back Tuesday because now my back was burning

and my nipple (on the right side only) - no answer so frustrated I called radiology

and by WED my Oncologist's P.A. asked me to come in- said she thinks I have

shingles. So started taking zovirax on wed.

Now it is Friday. Pain is still intense when I went

to my reg Onc for blood work and standard visit.

Tingling in fingers and feet are gone but back pain and

nipple pain feel like serious burns. No lesions...no rash.

Onc bangs on my spine a bit

and ask a few questions and is pretty sure it is NOT shingles and NOT spine mets

but doesn't know what it is. She gives me 100 lortabs and said I hope you feel better.

Maybe you pulled a muscle? She ordered another Chest CT for July 31

Help--------what should I do? Am I being too anxious about this?

Should I call a chiropractor?

I see my radiologist NEXT Friday- should I go over all this with him

and hope HE will be more proactive?

[Larry's Wife]

Gee, Marianne, I have no clue. Is it your skin that is hurting? Nipple pain doesn't sound like a pulled muscle. Hands and feet could certainly be neuropathy. Larry is on Neurontin for that. Do you have a primary care physician that you can talk to?

[mariannebreathes]

Thanks for replying--- the pain from my spine radiates in a band around to my nipple and it burns like sun burn - a constant pain that burns and tingles-

that seems worse at night when I am not distracted. Sometimes a shooting pain now and then. The hydrocodone does nothing but help me sleep so now I have 100 useless pain pills,sigh

Hurts worse with clothes touching it- it's the area right under my bra actually.

I have had shingles before but always in my scalp.

[blueeye]

My Mom had pain like that too. She said it was from a nurse snatching a bandage off from her chest tube site but it went on and on. They never figured it out for her either but she wouldn't pursue it. At first I also suspected shingles.

Instead of hopping on neurotin which can have bad side effects, I have read about taking a tricyclic antidepressant for nerve pain. Elavil is what I heard.

Good luck...I know these docs love the pain meds.

[SandraL]

Hi Marianne. I do not think you are being too anxious at all. I have a bit of neuropathy from I forget which..one of cisplatin or etoposide...numbness and tingling in fingers and toes. You have obviously got something much more serious going on. Please keep following up and getting help. I hope you get some relief soon. Take good care

Sandra

[Wendy]

Gosh dang it, I just hate these "weird" things that pop up!!

I can't be of any help on whats going on but I wanted you to know I had my fingers crossed that you start feeling better quickly.

Wendy

[recce101]

I've had both neuropathy (in the feet) and shingles (from the spine around the right side to just under the right breast). They were somewhat different sensations.

The neuropathy was a combination of numbness and tingling and an occasional shooting pain with an accompanying loss of leg muscle control. Neurontin was very helpful.

The shingles felt more like a sore muscle with burning on the surface, sometimes with a shooting pain, and there were some red welts in a couple of places that followed the route of that particular nerve from the back around to the front. I was given an antiviral (I forget the name) which cleared it up in about 2 weeks. I remarked to my doctor (our family physician in this case) that it wasn't nearly as painful as the stories I had heard. He said that's because I was already on Neurontin! He said the pain can be deep, on the surface, or both, depending on what parts of the nerve are most affected.

Could be you have two different things going on. Has the tingling gone away? You should be alert to that starting againafter your next treatment. It's good that you're being aggressive about this. Good luck and Aloha,

Ned

[chloesmom]

I had that pain too, about two months after my lung surgery. It was a band from my back to my left breast that was very painful to the touch and burning all the time.

Shingles was susupected by family members, just because of the recent stress, etc., but that wasn't what it turned out to be.

The onc couldn't figure out what it was, but decided on a pulled muscle. I never thought that was what it was. Gave me muscle relaxers which I took, but didn't help. Finally it just faded away.

I will always think it was an irritated nerve because that's what I think an irritated nerve would feel like, if that makes any sense!

But, it was on my surgery side, and it makes sense to me.

I hope this goes away for you. I still remember how badly that hurt.

Cindy

[Debi]

Hi Marianne!

I just happened to stop in here and feel compelled to reply.

I have had both neuropathy (still do) and shingles. What you are describing with your feet and hands definitely sounds like what I experience - the burning can be intense at times especially if I wear certain shoes - I suffer after. My hands are not as bad - but they get numb, and I do have tingling. The pain is worse in my feet but I think thats because you have to put shoes on and that irritates it. Besides the burning, I also get stabbing pains out of nowhere that only last a few seconds and then go away - thankfully, since I don't think I could bear it more than a few seconds.

I had shingles a few months ago so its fairly fresh in my mind. I had pain on my right side, starting in my back where I had my surgery actually, that came around to under my right breast. The pain steadily increased, it was a deep muscle pain that affected my whole right upper quandrant, including my breast. About 4 days after it started, I noticed the rash - I had already googled and pretty much was looking for it. THe pain was intense - in fact it was incredibly depressing becasue it affected the same area that had been affected by my surgery and the pain was the same. The skin layer pain and annoyance of the rash was nothing compared to the pain inside. I even walked like I did after surgery, arm up protecting my side, and listing to the right side. Anyway, I was on Loritabs and the doctor had said that oxycontin was next - the pain is that intense sometimes.

I googled for you and came up wiht the following. By all means, I think you should keep pursuing an answer through your doctors, but it doesn't hurt to arm yourself - good luck, and keep us posted!

There is, in fact, a condition called zoster sine herpete (i.e., zoster, the virus, without the herpes blisters), in which nerves are affected without the usual rash associated with shingles. In this case, the nerve involvement causes pain and extreme sensitivity, but the rash just never shows up.

Usually with shingles, once the pain sets in, it can last for up to three days before the rash appears. Sometimes this period of pain before breakout lasts longer — the severe pain associated with shingles can continue for weeks, even months, before there's a rash.

[mariannebreathes]

Thank you -so much EVERYBODY!

The pain is less- and I think the fear was making the pain worse. I was immobilized by fear.

My neuropathy seems to come and go and is not that extreme. That Magnesium oxide is really working for me!!!

The breast and back pain has settled down to a soreness and like a light sunburn. Just 4 lortabs a day now.

I have to leave the house= but want to thank ALL of YOU and GOD. He sent me a message today somehow........and it was "Don't DOUBT" and it has helped me immensely.

HUGS AND PRAYERS to you ALL

Marianne