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Groovygal67 Asked August 2018

Shingles pain. Any advice?

My husband was finally diagnosed with not only shingles but Grover’s disease. I guess as for the question and comment I didn’t see much about shingles here and I’m very surprised especially since it's worse for the elderly. I have never in my life and all the years we’ve been married seen my husband beg for death, cry help me, help me and scream to the top of his lungs raising the roof on the house. We were called from our neighbors. This has been ongoing with the shingles, I don’t know when it ends. He’s completely worn out from the pain, says it’s fire being held against him. They won’t get much in pain medication because it’s a new thing so they’ve started him on more nerve medication. Nothing seems to help this man. He can get sleep, no rest and neither can I.  He fell in the kitchen, cut his head he's starting to stutter. I can't understand him anymore he’s giving up. Has many health issues but this has been the worst thing I've ever seen, it’s taking him to a place he wishes to die rather than go threw the episodes he sometimes can have over thirty a day. I’m helpless and would welcome anything even just a friendly hello. I'm desperate.

Llamalover47 Aug 2018
Okay, I am going to say, above all else going on with him, that cutting his head is deemed a medical emergency. Sorry that I'm just now getting on this post. Please act on it.
I had Shingles when I was 20.
Painful, but not too bad. I am now 71 and my 67 y.o. husband got Shingles 2 yrs ago. My dr told me to get the Shingles injection so I did. I never got Shingles a 2nd time (from hubby).

preston Aug 2018
Ozone machine with hose going into a closed trash bag that you have your leg or arm in. Worked for a friend of ours in about 2 weeks.

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anonymous439773 Aug 2018
I’ve had shingles five times. First time was on the side of my face in 1979. I can’t remember what they gave me, but it took several weeks to clear up. The other 4 times I’ve had them they were around my rib cage to my back. I’ve had the two part vaccine. I’ve taken alcyxlotvir and keep amitriptyline on hand for the pain. I also have diabetic neuropathy and use amitriptyline for that as well.

baskethill1 Aug 2018
I had shingles and was told you cant get the vacine for 6 month after it goes away. Just fyi ..consult your doctor ..Though i believe it is a dead agent.
I was given some meds to clear it up . Before that i used cortizone 10.. After i used tramadol.. but i think it depends on the person ( clearly) Might want to try something with a numbing agent

moecam Aug 2018
Our neighbour had shingles & it effected him greatly - he ended up going for laser cauterization of some nerves in his rib area to lessen the pain level - this guy missed getting the anti-viral because he thought the rash was a reaction to a cream he was using - talk to his dr to see if that sort of thing would help him

A friend woke up early morning with shingles & was at dr's door when they opened - got the anti-viral right then & it lasted only 2 days - so if anyone thinks it might be shingles run don't walk for help

bones53 Aug 2018
My sister, around age 75+/-, had shingles years ago that were so bad she ran around the house naked. Could not stand the touch of wearing clothes on her skin. My brother-in-law responded, "If only it had happened years ago. . ."

Mary9999 Aug 2018
I have just finished a four-month bout with shingles and the after-pain (PHN) that can follow, depending upon one's age. I'm 75, and I did get the early vaccine (Zostavax) a few years ago, which obviously did not prevent my getting shingles. My rash began on April 9.

Here's what I've learned through this: Get an antiviral prescribed the moment the rash breaks out. It is supposed to lessen the pain and the severity of the outbreak. After the rash clears up in a couple of weeks, for the lucky ones, no ongoing pain remains. PHN (post hepatic neuralgia) remained with me until just recently. The older one is, the more likely they will have PHN.

To treat the rash and the subsequent PHN, I tried calamine lotion, aspercream, lidocaine cream, which all seemed to soothe the skin on my painful torso. My torso, spine to belly button on the left side, felt like I'd been in a fire and it was burned skin. Every movement, piece of clothing, sitting, walking, all hurt. I was in such a state for months!

I also was prescribed Gabapentin, which is for pain-killing after the outbreak, 900 to 1200 mg per day. I have finally weaned myself off this drug. I hated the side effects (weight gain, balance problems, losing hair, confused speech) but it must have helped with the pain. I was always afraid to stop it, in case the pain became much worse!

Since shooting nerve pain was part of PHN (like hot needles), I had a nerve block at the pain clinic, hoping for help, and I also took an antidepressent (Elavil) for a couple of months, as the tritricyclic drugs (eg, amitriptyline and nortriptyline) are supposed to help with nerve pain.

Finally, after almost four months to the day, I'm finished. I feel nearly back to normal, and I'd do nearly anything to avoid getting shingles (and PHN) again. I had the first of the new shingles vaccine (Shingrix), which is in short supply but can be located. My Walmart pharmacy had some. It is one shot now and the second one in 2-6 months. (Medicare Part D will pay some, depending upon one's coverage and supplement coverage.) You can read about Shingrix's effectiveness on various websites, and you also can get lots of information (more than you ever wanted to know!) about the horrible shingles.

MaryKathleen Aug 2018
I am so sorry for what both of you are going through. My dad had a bad case around his waist. It was so long ago that I don't remember what they gave him for it. A couple of years ago my friend had it on her face and eye. It damaged her eyesight permanently.

I would say, it your doctor won't/can't help, try a pain management doctor.

The new vaccine is SHINGRIX, I too am very scared of Shingles. I just got my second shot. It comes in two shots taken 2 months apart. My insurance paid for it. One CVS pharmacy said it didn't, Medicare said they did pay for it. So, we went to a different CVS pharmacy in our town and they affirmed Medicare did pay for it. Get on a list if they are out of meds.

Isthisrealyreal Aug 2018
My dad got them on his face and it went to his eye and over his scalp, he was prescribed Lyrica and said it helped.

He said that nothing completely alleviated the pain but made it bearable.

Im so sorry that your husband is suffering to the point of wishing death would come, my heart goes out to you having to stand helplessly by and endure everything he is going through. A scary place to be.

Keep trying all the suggestions and get his doctor to give him some nerve meds. If he/she won't, time to find a new doctor, there is no reason for letting someone suffer when there are solutions available. I think I would ask for something for myself as well🤯.

Hugs to you!

RayLinStephens Aug 2018
We were prescribed Acyclovir (Zovirax) for my DH and later for my Dad. I kept the leftovers!

The sooner you start with the creams, the faster the healing - thankfully both were diagnosed quickly.

Get yourself a Shingles Vaccine ASAP - and I just learned yesterday that there is now a Booster Vaccine for it. I got my shot in 2015 when DH was in hospital because I knew stress will bring on the shingles. Now I'm on the waiting list for the booster.

From what I learned online, it seems to me that shingles has mutated since it used to be basically around your middle but now it can be anywhere, including your face.

Why isn't your husband prescribed something for pain? Anything to help is better than pain. He should have been prescribed morphine by now. I am so sorry you both are having to deal with this. Shingles scares the heck out of me, that's why I didn't wait for Medicare to get my shot.

Litlebit67 Aug 2018
My husband used a 2.5% HYDROCORTISONE and it helped a lot.

HolidayEnd Aug 2018
CBD lotion could help (it’s marijuana oil that has no THC, so relieves pain and itching without the hallucinating effects). It’s been shown to relieve seizures and nerve pain in some people who’ve not gotten relief from pharmaceuticals.

You could try it although in some people it’s ineffective, in other people it’s worked miraculously.

DeeAnna Aug 2018
Ask your local pharmacist at Walgreens for over-the-counter itch/pain relief topical medications.  Their website lists the following as topical treatments for shingles pain:
Walgreens:
-- Terrasil Shingles Skincare Ointment1.5 oz. $29.99
--Capsaicin 0.075%

cdc.gov/shingles/about/prevention-treatment.html
Suggests:  Wet compresses, calamine lotion, and colloidal oatmeal baths may help relieve some of the itching.

BarbBrooklyn Aug 2018
(((((Hugs))))))! Has anything topical been tried? Like stuff for sunburn like solarcaine? That helped my husband.

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