Exhausted post shingles

Shingles can hit both sides of your spine. It's not that common but it does happen. I would stay on those anti virals. That's the only thing that helps me. When I feel awful I double up on those anti virals and I feel better, not great but definitely better in 24 hours.

Thanks for the info - will remember that! 😀👍

They need to update those photos and descriptions don't they! I don't know what your final diagnosis is, but I've now learned personally and especially from this group that there are many variations on the symptoms and rashes. I've seen shingles several times, but never thought, as did my doctor, that I had it. It wasn't until 2 weeks later that I had a new patch, which looked like classic shingles.

Babs,

Also, the medical profession needs to update and disseminate the correct knowledge regarding the Herpes Zoster-Shingles disease, diagnosis, treatment, and pain management.

Merry Juliana

Unfortunately shingles is caused by a virus and antibiotics will do nothing to help. There are some antivirals like Valacyclovir but they don't cure the virus. From my experiences with shingles the antiviral meds only help to lessen the severity of the shingles outbreak if you start taking them very early during an outbreak.

Jazzyanne,

Antivirals stop the virus from replicating, and therefore decrease the severity and duration of the episode. They are worth taking, because otherwise the pain is much worse and lasts much longer. The voice of experience is speaking here!

Merry Juliana

Thanks x

Dear Babs,

First, I am so sorry for your suffering and pain. Shingles is one of the worst pain known to mankind. This includes childbirth and passing kidney stones, and I have done both. My initial episodes with Herpes Zoster-Shingles was the absolute worst pain I ever experienced in my life of 65 years.

Often times, many of us who have recurrent episodes use ice to numb the neuropathic pain. If you are having muscle spasms in your midback, then heat does feel wonderful and is beneficial.

As you are having excruciating pain, I would return to your physician and ask for a strong opioid to alleviate the severe pain. Until the overdose epidemic in the US, that is how the agonizing pain would be treated, with Neurontin or Lyrica as an adjunct to treat the neuropathic pain.

There is no reason you should suffer and not be able to sleep due to incapacitating pain.

Studies have shown that if the pain fromHerpes Zoster-Shingles is well- controlled by the end of the first month, the chance of developing Post Herpetic Neuralgia PHN decreases markedly.

Have your vesicles-blisters dried up yet?

The symptoms of Herpes Zoster-Shingles during the acute phase often include chills and sweating, generalized joint and muscle aches and pains, fatigue and exhaustion, and malaise. Depression can ensue due to the severe intractable pain, inability to get out of the house and socialize, and being ill. Many physicians are abysmally ignorant re the severe pain and other symptoms of Herpes Zoster-Shingles. They often think of it as a rash and a little pain. They do not realize the devastation that can occur if not treated properly in the beginning.

I am a Nurse Practitioner in the States. I have Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty years and twice in my right eye. I was one of those who was not diagnosed early, received no pain medication, and suffered unbearable agony the first two times with this disease. Two ENTs

thought I was narcotic seeking. The neurotologist actually diagnosed me.

Please let me know how you are doing.

Best Wishes

Merry Juliana

Thanks for your support. I didn't take time (or brain cells) to write more last night but here's the background, it's not all the doc's fault (BTW I've worked in healthcare for over 30 years as a medical secretary so I'm familiar with the system.) First, you nailed all my symptoms over a 2 week period, that's why we didn't catch it. We were traveling and I didn't realize what the chest pains were, we were very active, at high elevation, etc. which were all logical triggers. I didn't notice any "bumps" (there was only one that looked like a vesicle, and about 5 others scattered over about 8 inches) until a week later. When we got home, 4 days after that, I actually still felt quite good but knew that I should see a doc in case it was shingles--I diagnosed them in both my dad and husband in the past. Doc and I agreed, too late for anti-virals and he didn't think it ws HZ. Then 4 days later I had classic vessicles in a small patch on my front (same T-4-5 location as the back) and increasing pain. It was again the weekend, so I called in and they suggested the lidocaine patches. Well, you probably know they're only good for 12 hours, but the pain is 24 hours.

Then I switched to the 4% cream every 6 hours.  Monday I saw my regular doc, he confirmed the DX, but as I don't tolerate most meds well we started me on a low dose of Gabapentin. Even after the first done of 100 mg Monday night, it made a difference. I finally slept most of the night, but when I woke up, I was still comfortable. That's compared to pacing, taking a shower and waiting to take more acetominophin and cream. Yesterday (Tuesday) I had had 100 mg in the AM, 100 mg in the PM, but because of stupidly taking the antacid, it didn't work. I can tell when the NSAID, lidocaine cream or Tyelnol start wearing off, but I was relatively comfortable yesterday, until that night. I called a pharmacist at 10:30, he said, take another Gab, so I did, but didn't seem to have much effect. I had more intense pain than the other days. So the night was 90 minutes of sleep, awake and pacing for 2 hours, repeat until 6:15 am...

I'm hoping with a better regimen today, I'm writing this at 8:15 in the morning my time. I think we'll have to increase the GB more quickly. I'm not really at an effective dose and as I seem to tolerate it, we'd better accelerate it.

What I was looking for was 1) a connection to someone, so thank you so much, and 2) any suggestions for dealing with this. I think I'm already doing everything I can (off of work, cream, pain meds, GB, showers to relax and distract) I can try the ice or heat again. I think some of the pain IS from muscle strain/tightness, not the virus. 

My doc said he feels this IS PHN, even this early, what do you think? This is so atypical.

I am so sorry for what you've gone through and the fear of the unknown and wondering if this WILL get better makes it so much worse. I'm trying to stay positive, but you all how hard that is when you're in pain.

Babs,

PHN by definition is the chronic neuropathic pain in the same area as the Herpetic rashly lasting 30 or more days after all the vesicles-blisters have crusted over, usually at the 3-4 week time frame. Therefore, it is too early to call the pain you are having PHN, but definitely classifies as the acute pain of Herpes Zoster-Shingles and should be treated as such.

There are other definitions of PHN, with the continuations of pain all based on the time frame of the eruption, anywhere from one to three months, either initial eruption or complete crusting over of the lesions. That being said, you are still in the acute phase for one month.

Just so you know, Google the Lysine-low Arginine high diet connection to Herpes viruses. These are amino acids that everyone eats. Lysine suppresses the Herpes virus, and Arginine "triggers" the virus. I have found by avoiding peanuts and cashews and macadamias, Yummy!!!! all high in Arginine, my episodes of Herpes Zoster-Shingles are less severe and of shorter duration. Before I knew of this diet connection, my episodes were horrific. Some individuals take Lysine supplements to avoid recurrences, but please know there are serious liver, kidney, and cardiac adverse effects with this supplement.

Again,

Please keep me posted 🌞, as I like to know how my "friends"/ "patients" are doing.

Let me know how I can help you!

Best Wishes

Merry Juliana

You all are incredible, just getting a response helps. I replied on a different thread that I started. I called the doc, he's increasing the Gab today, but we're still going slowly. I'll be on 200 mg 3X a day for the next two days. Unforunately I now also have the blurried vision and shakiness. But I'll put up with it if it helps the paini. It's early afternoon but I'm going try a nap (whiich I only do when I'm really sick). The exhaustion makes it harder to deal with this, as you all know.

I did read about Arginine, I am avoiding those things now and chocolate.

Thanks again,

Babs

I don't want to hijack the original thread, but as Merry replied here I wanted to respond. How's this everyone, my HUSBAND was just diagnosed too! I'm not surprised. He had them about 10 years ago and was dealing with the same wonderful, crazy trip and other things the last month which gave me stress over-load. I actually diagnosed him (and my father) previously, so when he said he had chest pain (like last time) and asked what I thought of his rash, I said it didn't quite look like shingles, but as I had to call the doctor we'll ask.

They had him come in, and by his appointment it looked like classic shingles rash! The doctors almost ready to retire and he's never seen a husband and wife with them at the same time. So, he'll be fine, got the Valtryx, but it's unbelievable.

Babs,

Truth is always stranger than fiction. At least you two can be supportive of one another. It must have been some trip!

Merry Juliana

The trip was epic. A 6000 mile road trip over 3 weeks including many National Parks in UT, AZ , and NM, thru NE, NY, OK etc. It was our 40th anniversary trip and months in the planninig. Incredible views, hiking, fascinating people, but exhausting. However, regular life also goes on.   A 6 week span also included: a ballroom dance competiton for me (wonderful and successful) a short anniversary trip, the death of a beloved pet, transitioning to retirement, Social Security, job changes, Medicare, a 25% increase in healthcare from $1100/mo to $1500/mo (ouch). Then my part-time job almost tripled my hours the week of the trip and  6-8 weeks afterwards.

The last is what put me over the top I think. I'm semi-retired, 61, former healthcare worker now in private industry working 10 hours per week. now about 26 hours. I joked before hand that I'd unpack in a month or two.  I've been off of work this week, obviously, but not sure when I can go back.

At least I'm seeing progress in my health. I'm being VERY careful with any movement as I realized using my arms only aggravates the problem, so trying not to twist, lift etc. I got sleep last night, finally, and the increased Gabapentin should continue to help.

Merry, I do have a different post that I started. I'm not sure how your forums work. Is it OK to continue our discussion here or should we move it over there?

There is an envelope at the top line where you can place private information.

I am happy you started semi-retirement off with a bang! Love to dance-ballet & ballroom, travel, the national parks...but the stress and exhaustion was there to precipitate an episode.

Best Wishes

Merry Juliana

Do hope you are on the road to recovery Babs!  I, too was diagnosed 2 wks into his shingles adventure/nightmare.  Went to the ER on 10/30 and was diagnosed in ER w/ thoracic strain!  Totally missed it!  Two days later, I went to my own Dr. Who diagnosed shingles.  He started me on Acyclovir and Prednisone for 10 days.  He says, I am PHN now even though it's been about a month since initial blister.  I have dry rash on my right side, broke out w/ a blister on my left arm the other day and some more dry rash upper right torso and one close to neck.  today I have some small rash under right eye.  Dr. Saw the ones on torso yesterday and doesn't believe these are shingles related.  He thinks it's an eczema.  I do have sensitive skin.  I beg to differ.  Merry, is this common to continue to break out?  Thank heavens for you Merry, you help us soooo much!  We are on a get-away ourselves and I am resting as much as possible.  I am on Gabapentin 300 mg tid (3 X day) and take it 9 a.m. - 3 p.m. And then 9 p.m.  also, using the 4% Lidocaine patches at bedtime.  Seems most of my discomfort/pain is in the evening and during the night.  I have used a TENS in the past too!  Hope this info helps any and all who are suffering.  Hugggsss to all who have been helping and supporting us through this.

Hi Donna,

My thoughts on rashes:

If it looks like a duck, quacks like a duck, feels like a duck, waddles like a duck, then it's a duck!

Meaning:

If the rash has similar vesicles-blisters and the burning lancinating pain of shingles under the rash, then it is shingles. If the rash responds to lotions, emollients, and hydrocortisone ointments, then it is eczema. Eucerin rocks for eczema, btw!

I have eczema, too!

You can have a recurrent episode after the initial rash in a different dermatome.

The key is whether you have any other symptoms such as the burning lancinating pain under the rash or whatever you felt with the initial rash..

Best Wishes

Merry Juliana

Left arm is a blister and the others dry rash.  It took 2 weeks after the initial blister for pain and burning to start.  

Thanks for your response Merry and the tip on Eucerin.  I think I have some Aveeno cream I have used before.

It's just the "not knowing" and coincidence that these rashes/outbreaks occur  during this shingles outbreak that have me wondering.

For the eczema,

I take a bath, after which I slather on baby oil with aloe vera, then eucerin ointment (with petroleum).

I have very rashy and dry sensitive skin.

I wash with dove liquid soap for sensitive skin as most others cause rashes.

Hope this helps

Merry Juliana

Wow, Donna, are we "sisters from another mister"? We sure are in similar situations aren't we. I checked my hubby for more rashes today, and he said "why, I'm on Valtryx". Yeah, I wondered too if it could happen, we'll keep an eye on him and me (I mentioned earlier that he's now got it too, again!) Yes, the unknown is so hard, for me my hardest times are noonish and 6:00 pm ish when the meds need to be retaken. I'm trying hard to stagger them, but it doesn't work.  I do mine around 7:00, 2:00 7:00 and use the 4% ointment so I can have more continual relief. If I wake at 4:00 I can take Tylenol and put on my ointment. They're increasing my Gab slowly, as I have troubles with meds. I'm at 200mg 3X a day, but it will increase Saturday. I'm not sure what the max is he'll give me.

I'm sorry you're dealing with it too, but doesn't it help to find someone who understands? I mentioned earlier that I have SEVERELY limited my activity/use of my hands/arms and twisting. So I felt pretty good this am, then felt like I was being a wussy wimp so started little stuff, like bending and tieing shoe laces, putting away 1/2 gallon milk. Yup, the pain's back up to a 4-5 vs. 2-3. When it gets to 8, that's when the tears start so I'm laying low again.

Thanks for the PM info, I guess what I  meant was more what the protcol or etiquette was here for posting or hijacking someone's thread. I'm very active on a travel forum and it's considered bad form to start asking questions in the midst of someone else's thread. It seems that here, it's fine.  Thanks again Merry and to everyone else. This is one of my bright spots in my day.  I also started another thread about how to maximize treatment, rest vs "powering through", but the more I read here, the more I realize that slow-and easy seems to be best and that this is a much longer road than I or family/friends will understand.

Yes, and you are older and wiser not to worry what people will think! Gasp!

Merry Juliana

Do hope you and your hubby will find some relief!  Yes, it does help to hear what others are doing for relief.

Napping and taking it easy this afternoon.  Just hope I can sleep tonight.  You might try the 4% patches.  I cut mine up and place them here and there.  A good friend of mine told me she does that.

Where's the "like" button?

I considered that with the patches, but the problem is they really should not be on the body more than 12 hours, even switching locations, and my pain is too intense to not having something on. The pharmacist and I felt that the 4% gel is a better option as I can keep applying it. The first time I used the patch (my gosh, was that just 5 days ago, it feels like I've had this for months!) I put it on at 10 am removed it at 10 pm, then reapplied one at 3 am. Then got the gel, put it on at 8 pm and within 20 minutes got lightheaded, ringing in my ears and felt lousy. We immediately washed it off. I realized later that I still had too high a level of lidocaine in my body, hence the reaction. I am sensitive to the drug, and you may not be, but be very careful with it. It can have serious side effects. The gel loses effectiveness because of the way it's absorbed in the body, which is sort of bad news, but makes it safer to use. 

I hope you sleep tonight too Donna. Having even one good night of sleep made such a difference for me.

Babs,

Careful,

as too much lidocaine or an allergy to it can precipitate seizures....

Merry Juliana

Thanks for the caution. I'll try and cut back. My hope is that gel loses it's potency so quickly that it's not a concern as compared to the patches. I'm trying to use it only 3 times a day, but by 5 hours it's almost worn off. On a goofy note, I'm on an anti-seizure med with the Gab., so won't they balance each other out?  Just kidding.