I need to know if this is just the shingles or the MS?

[Sissy]

I am just getting through a bout of shingles and am still having a lot of what I think are the "paresthesia symptoms"!? Where my right side stings like a bunch of fire ants have taken over my skin! I have to keep a constant pressure on it to stop the stinging.

I can't even describe how bad it feels! I have to keep the area covered with ice to stop the pain! Its horrible. It can go on all day long. No amount of meds stops it. The area feels kind of numb sometimes. Even my mouth and tongue feel numb at times. all of the lesions are dried up and I just want to sleep.

I need to know if this is just the shingles or the MS?

[JerryD]

I'm so sorry that you are going through this agony. I've never heard of this before. I think that you need to talk to your neurologist or PCP asap. good luck

[jreagan70]

If the pain is around where the shingles rash was, you probably have postherpetic neuralgia, the pain that remains after a shingles outbreak. post=after, herpetic=herpes virus, neuralgia=nerve pain

Google postherpetic neuralgia and see if what you're feeling is what's described.

I hope you feel better soon.

[22cyclist]

I agree with the previous poster, it sounds more like shingles, especially if you can get rid of the pain by putting pressure on it. That sounds more like parasthesia. The best thing you can do is call your neurologist and tell them your symptoms so they can decide what to do with you for the moment. I hope you feel better soon.

Take care
Lisa

[pennstater]

Hi Sissy,

Sorry to hear. I had similar experience at the end of last year. I didn't have shingles though. Mine was from MS, but any pressure made it worse. water, clothes, anything touching made it worse. Thankfully, with IVSM, it went away. I get residual zaps, but short lived and not anywhere near the intensity.

I hope you get some relief soon. I know how brutal it is. I was in tears for days.

[Sissy]

Well I did go to the Mayo Clinic site and looked up," postherpetic neuralgia"! Yep, I think that is it.
But I did not say anything,"here" about the other things that were going on also ( sorry I didn't mention them here as it takes so long and I am having so much problems staying awake and out of pain long enough to write it all down!!)! But in a "nut shell" that is what seems to be going on.



So (I went to see my GP yesterday after posting) and she said that she thinks it might be both! The shingles looks good, but I seem to be having a flare a long with the shingles. No one said anything about the neuralgia but I'm inclined to think that is one of the things going on too.

[grammy2many]

PAIN

I've had all 3 - shingles, neuropathy and post -herpetic pain. Here is how mine differed:

- Shingles had red that had severe pain that would not go away no matter what I did. Ice didn't help - heat helped some.

- I had severe neuropathy in my upper arms that felt just like fire ants were marching and biting on me and the only thing that stopped it was applying ice bags. Stopped for awhile and came back later. This went on for about 6 months about 5 years ago and has never returned since. (and hopefully never does again. There was no red rash, but just the irritation.

- I have some post-herpetic pain after the shingles. No rash, but feels like a sunburn-type irritation where the shingles outbreak had been

Hope this helps.

[BadAttitude]

If the pain is around where the shingles rash was, you probably have postherpetic neuralgia, the pain that remains after a shingles outbreak. post=after, herpetic=herpes virus, neuralgia=nerve pain

Google postherpetic neuralgia and see if what you're feeling is what's described.

I hope you feel better soon.

This.
I wound up with postherpetic neuralgia after delaying treatment of shingles, thinking it was merely poison ivy. Delaying treatment for shingles increases the risk of developing postherpetic neuralgia. Hopefully you were placed on an anti-viral regimen.

If your doc determines that it IS postherpetic neuralgia, he may prescribe a tri-cyclic anti-depressant. It's what my doc prescribed and it did help alleviate the pains, although I still get them from time to time. I was very glad to see them subside. I hope you feel better soon.

[Sissy]

I called my Neuro guy, but ever since I got a neg. on my spinal tap he seems to have written me off...?? When I asked his associate the same question I need to know if this is just the shingles or the MS? (he does not seem to care or hear me!) They made me an appointment for July 23!

Why is it I can get more advice here than I can from my Drs ? I feel like my Neuro Dr. is out of the loop on MS. My feelings are hurt by his attitude....I guess that is silly of me. But now I have to wait over 6 wks for his evaluation of my shingles/ MS. Does this mean after 6yrs I no longer have MS?.

[Maggie2015]

so sorry--and my experience with shingles vs. MS + doctors

Sissy,

Oh, I am so sorry--first about your pain and second because your doctors, including your neuro, aren't hearing you.

In my opinion, July 23rd is too long to wait for you to be in the kind of pain.

I had shingles when my daughter was 9 months old. This was before my MS diagnosis. She and I were visiting my family in Michigan for a month in May and we were taking a bath together and I remember feeling a burning along my left side of my stomach (from my hipbone to my ribs).

A day or two later, I got the blistery rash and googled it, and it came up with images for shingles that looked exactly like the rash I had.

So I headed for urgent care and they gave me Vicodin? Nothing else that I can remember. I slept for about four days.

When the lowest of my lower back pain gets out of control, it feels fiery and burning, comparable to shingles (though it isn't. Although jeez, I don't think it is).

Oh, Sissy, I totally understand your question: "does this mean after 6 years I no longer have MS?"

Of course it doesn't, but you are being treated in that way, so it seems that way. I feel similarly with my back pain. For me, it seems as though once they determined it wasn't a relapse, it wasn't an "emergency."

But in this kind of pain, it sure feels like it's an emergency. And you know what: I think it is!

Do you have anyone who might give a call for you to get you in earlier for an evaluation and I HOPE WITH ALL MY HEART, some relief! What I mean is, is there someone who can be very forceful on your behalf?

This is not meant as a criticism of you in any way. I just know that when I call I am so concerned about being polite and not demanding, or I am in so much pain I can't summon the energy to be assertive.

You deserve better treatment than you are receiving. And goodness, I completely understand why your feelings are hurt. Mine certainly are and have been when I've received similar responses.

It's flat-out sad and flat-out unfair.

I am wishing you the best, from one pain-filled person with MS to another

Maggie

[Sissy]

You are so sweet!!! Thank you for your kind words! I think my daughter is in agreeance with you about my care, she is a nurse also and says she is going to call for me ( I'm a retired peds nurse and don't like to make waves if its not for someone else)!

The only relief is when I lay on that side (rt. Side)! If I am standing or trying to walk it feels like a horrible cramp, being stung by fire ants and every step I take makes it worse! Plus I can't stand anything touching me!! I'm sorry I know I'm repeating myself...But its like you said I feel like no one is hearing me!!

My poor husband is 77yrs old and waiting hand and foot on me! He has health issues himself and can barely get around. He can see how hard it is for me to get up and down, then he says I walk around holding my side in a bent over position because it hurts to much to stand up straight. Plus my clothing just touching me makes me want to scream!

I noticed that the pain is starting to move into my breast and to effect the left side of my chest somethings. Maybe its just the way I moving or not moving. Who knows its been going on for any 7 weeks or so now. I'm loosing my mind I think!!

[jreagan70]

Hi Sissy:

A lot of people with shingles are treated by their primary care doctors.

You said you saw your GP. She can prescribe anything the neurologist can prescribe. Why isn't she helping you with your post-shingles pain?

[Sissy]

Yes my GP is the one who is helping me with my shingles. My pain Management prescribes my pain meds. But nothing seems to be helping with this pain I take a lot of meds already. I already take a lot of meds. My GP thinks some of it is my MS but my neuro does not. So I'm just trying to get through the best I can!

[Fed Up]

Yes my GP is the one who is helping me with my shingles. My pain Management prescribes my pain meds. But nothing seems to be helping with this pain I take a lot of meds already. I already take a lot of meds. My GP thinks some of it is my MS but my neuro does not. So I'm just trying to get through the best I can!

I felt like I've become an unwilling host to the shingle and finally, might be rid of it. I had body aches, like the flu--only worse with shingles. Even after the lesions were gone, I had plenty of pain from it. Kept breaking out with it until a few months ago.

I've started taking Lysine daily and it sure helps keep it at bay and no shingle pain, finally--after 2 years.

I have a area, similar to yours with burning etc. At the top left of my spine. I first thought it was shingle related, now I am not--the shingles are gone and this lingers on.

Good luck, please know I empathize with you. Definitly, urgent care is where you should have gone, I am SHOCKED they didn't give you anti-virals and other meds for comfort. As said, it is a urgent condition and you should see a doctor within 3 days of the outbreak for better results.

I feel your pain. fed