Calling 111 with shingles.

Hi Mynxie. Sorry to hear you're suffering the dreaded Shingles. It truly is horrible, worse pain than labour! I think probably cool showers regularly and maybe baby wet wipes, (perfume free) in between would be better than anti perspirants as they might make you itch and pain worse. I had it on my right shoulder, arm down to the hand, wrist and thumb and still have the PHN almost two years later. I don't think I got the anti-virals quick enough either as the pain came after the rash appeared on shoulder/upper arm first and I didn't notice it for several days. Carry on with the pain meds and whatever the doc prescribed. If it's not enough, go back to him/her. Amitriptylene helped me at night, an old anti depressant but often given for this type of pain now. Best wishes, Poll

Hello Mynxie,

I started with shingles last June and have had three recurrences since then. There was a delay in getting me on antivirals the last time because my doctor prescribed an alternative medication that turned out to be unavailable. The result was that I've developed a bit of post herpetic neuralgia, so you certainly did the right thing in getting it diagnosed and starting on antivirals quickly.

Thankfully, my incidences have been relatively mild - especially the recurrences. 

The first time I was diagnosed I was prescribed codeine 30mg alongside the antivirals but I'm now on amitriptyline for the PHN. I think your dose of 10mg is the minimum that you can take. My doctor started me on 20mg (2x20mg) and has since prescribed 25mg tablets, which I'm finding much better at controlling the pain. My pain is relatively mild - it feels as though I've pulled muscles in my side - yours sounds much more severe and I wonder if it would be worth asking your doctor if you can increase the dose. I think the maximum is 75mg.

I do hope that you get some relief, and quickly.

David

 My initial dose of amitriptyline should read '20mg (2x10mg).

 

Thank you for your advice. I spoke to the doctor on the phone this morning and she has upped the amitriptyline to 25mg. I know this will really knock me out but at the moment I'm quite happy with that - anything is better than the constant searing pain. Its a shame in a way that there isnt more of an outward 'show' of the infection - half a dozen or so patches of rough looking skin doesn't relate in any way to the pain I'm experiencing. I think my husband understandably can't get why I'm making so much fuss!  I am still in bed as I find that when I get up the pain seems to intensify at the moment. Maybe when I take the increased dose age tonight it'll be more manageable tomorrow.

I'm glad they've upped your amitriptyline. It may or may not knock you out. It may make you drowsy but it can also give you disturbed sleep. It tends to do both to me.

However, if you find it does give you relief from the pain, please be careful not to do too much. It's tempting, but you may just need to rest. Trying to do too much can simply exacerbate the condition.

As for the rash, I've only ever had a fairly minor rash that looks a bit like nettle rash. It's the other symptoms, which can be very varied, that often cause the most problems.

Hope you get some relief soon.

Mynxie

Please do not use deodorant under your arm...you may surprise yourself and discover you do not need it after all these years!. It will burn terribly...

Please purchase an over the counter OTC

topical Lidocaine or Benzocaine Cream of the highest percentage available (ask the pharmacist) to apply to the area. This will soothe the nerve endings. Do not buy gel as it contains alcohol.

Please continue resting, as any movement causession those shocks of pain.

Best Wishes

Merry Juliana

Thanks Merry, I'll follow your advice. I think I'll try a coolish bath tonight as I can't bear the thought of the shower hitting it - it seems to be spreading and is now across my back, right round my armpit and right down the underside of my arm with tingling starting on my thumb...

Why is it so much more painful sitting on the sofa rather than lying in bed I wonder, and you're right, every time I move it hurts. This is not a nice infection is it? 

I cannot understand how anyone can put up with years of this pain especially in your ears or on your face, you must be extremely brave! 

Thank you for taking the time to write to me, especially as I know it hurts you to do so. 

Best wishes

Mynxie Lyn

 

Hi Mynxie,

If you're having a bath, oats may help. Put some oats in a muslin bag - or anything that will substitute - tights or a sock - a let it run under the tap as you fill the bath.

I know what you mean about the shower. I only have a shower and my rash, mild as it was, was sensitive to the pressure of the water. It helps to deflect it.

I made a mixture of colloidal oats in coconut oil, a little olive oil, and a few drops of lavendar oil to use on my rash after a shower. It certainly helped. I'm sure I've got the recipe somewhere, which I can post if you think it might be helpful.

David

Mynxie,

The good thing is I can help wonderful people like you through my own experience!

I learned to view life as an adventure with blips in the radar...I learned to thrive instead of being the "victim" or "survivor."

A sense of humor helps tremendously.

I know how agonizing the pain is. I am 65 and realized when I had Breast Cancer, I didn't need deodorant anymore. The hormones dry up as we age...lol

Merry Juliana

David

What a fantastic idea...I would love the recipe! For other shingles patients and eczema!

Merry Juliana

Yes please, I'd love the recipe. I'm open to any advice at the moment and it's so valuable to be able to talk to people who know what it's like having this horrible 'thing' As far as I'm concerned it can go back where it came from as soon as it likes, preferably sooner!

Yes, I think the same as you (though it's obviously easy for me to say when I'm less than a week in!) whatever doesn't kill you makes you stronger as they say.....

only trouble with that is that if I don't admit how painful it is to my nearest and dearest I think they'll expect me to be as 'normal' and not rest 24/7 as I feel I need to do just at the moment!

Mynxie

I quite agree with admitting the pain is excruciating. It felt like I was being electrocuted through my ear canal to the center of my brain while giving birth via my ear canal. I literally wanted to cut out my inner ear..a la Vincent Van Gothic!

Merry Juliana

Well that made me laugh even though I shouldn't - it's such an accurate description I can (almost) feel what you mean! All I've done is put a tray of chips into the oven and the pain is making me cry, now just how can that be?? And I thought I had a high pain threshold, now I feel like a 2 year old and want to stamp my feel and roll on the floor in a tantrum about how unfair it is!! except I won't of course, it would be far far too painful  

HOMEMADE ECZEMA CREAM/SKIN MOISTURIZER

Items needed:

1/4 cup of oats

3/4 cup of coconut oil

Few drops of rosemary oil {optional}(I used lavender oil as I didn't have rosemary oil)

1 tbsp of olive oil

Recipe:

1. Finely grind the oats to a powder/flour consistency and set aside. {You can use a blender, food processor or a Magic Bullet type of appliance.}

2. Over a low heat, melt the coconut oil in a pan until it has a liquid consistency. 

3. Add in a few drops of Rosemary/lavender Oil. {If you are adding it.}

4. Add ground oats in the pan and mix until well blended.

5. Now, pour the olive oil into the mixture until blended.

{This is what it will look like once all items are added…}

6. Once all ingredients are mixed, remove from heat and pour in to a small storage container. {It filled up 1 1/2 baby food jars.} Let it harden for several hours.

Now that your recipe is complete… Apply to hands and skin as needed and feel the magic at work! 😉 This recipe lasts for a long period of time so enjoy!

-----

WHY OATS? Oatmeal contains healthy fats. When they come into contact with your skin, these fats help to add moisture to soften and repair your skin.

WHY COCONUT OIL? Coconut oil works wonders as a moisturizer for all skin types, especially dry skin and aging skin, leaving you refreshed and looking wide-awake. The fat in the oil helps reduce the appearance of wrinkles without any irritation.

WHY OLIVE OIL? It is a great skin moisturizer, in part because it contains linoleic acid, a compound not made by the body, but which prevents water from evaporating.

WHY ROSEMARY OIL? Rosemary essential helps in toning your skin and removing dryness. (Lavender oil is antiseptic)

see my reply to Mynxie.

xx

Thank you, will send out for some coconut oil tomorrow- have everything else in the cupboard I think. 

Thank you

I'm sorry I suggested trying it Mynxie. I didn't realize the rash was actually into the underam area, I was thinking it was on the underpart of the upper arm or the side of your chest. For some reason I never got a real rash, just the intense pain. Glad Merry caught this. And yes, after a "certain age", our bodies don't need as much (or any) anti-perspirant or deodorant.

It's hard to figure out if telling what to expect will make it more depressing or help you to prepare, but as our affected area is the same--that nerve around the bra line to the front--and I'm 3 months into this, I'd like to offer some advice. But be aware the mind/brain still takes a while to accept what you really have to stop or give up, so it's easy to keep trying to "work through it" or "suck it up like a big girl". It took people here, particularly Merry and David for me to get it. And a dear friend who said, "you HAVE to go back to the doctor AND stop working". I was then out of work for two months.  You are dealing with nerves and nerve pain, this is quite different from a cut hand or broken arm, you want them to stay as undisturbed (you stop moving and be as pain free-ish as reasonable) to aid healing and prevent PHN, a longterm condition. So, don't bend, don't lift, don't twist, don't lean and talk to your husband. He won't know how painful it is until you tell him. My dear hubby and daughter/son-in-law were absolute angels the last few months. Now that I'm doing better, I try and help, but know my limitations (usually) and when I feel the pain, I just stop and rest.

Thanks Babs - you're quite right, I've figured out today that movement of any kind in the affected area sets off the pain so am resigned to staying flat in bed for now. I'm pleased it's not in my right arm as at least I can still type and eat! I'm surprised there isn't any better treatment these days - though I guess that until it affects you you have no idea of the pain involved.

Mynxie

It is more painful when you sit as there are more pounds per square inch of pressure on the site when you sit than when you lie. ie less tissue to absorb the weight of your body, so to speak...(physics)

How are you today?

Best wishes

Merry Juliana

Thanks Merry (or would you prefer Juliana?!)

Still incredibly hurty but I have had times when's it's not quite so bad. I'm very lucky in that I have a tv ap on my iPad, a good wi if connection and plenty of books on the kindle in my bedroom. I've just downloaded an audio book - problem with that is that it tends to send me to sleep! If I get up to go to the bathroom it gets worsebut there's no way I can get out of that one! I wish I could find an article for carers of shingle sufferers that could explain just how it feels as I don't think I'm very good at describing the pain - toothache down my back and arm is the best I can do! 

And how how are you today? Where about are you in the States? I'm not far from London so a fair way from you! I've made some good friends on line through playing Scrabble, never thought I'd find more on a shingles support forum!

lyn

Mynxie,

My first name is Merry, thank you. My ide

I am fine, today...I have never played scrabble on-line before....I admit to being addicted to crossword puzzles and word games on the phone.

My father was an excellent cross word player and Scrabble player and taught me everything he knew.

My husband and son and identical twin are extremely supportive of my various health issues, as I am of them.

I live in Millsboro, Delaware, which is on the Atlantic Ocean. It is one of the original thirteen colonies that rebelled against King George III. I live in a rural wooded area.

Keep resting and sleeping.

Best Wishes

Merry Juliana

I did wonder how you were able to type, that explains it. When you're better, you'll find yourself using your right arm more than your left. My hubby had to help style my hair (went pretty well actually) as I couldn't use the hair dryer. Merry, thanks for the physics lesson! Now that I'm careful about leaning/lifting/bending, I find the worst thing is sitting and typing at a a keyboard. I finally (duh) figured out that if I use my laptop as literally a laptop and put it on my lap, it's easier to work.  Mynxie, you're holding up much better than I those first few days. I totally lost any sense of humor. I found I HAD to try and distract myself, as I didn't get any anti-virals and those early days were, well you all know.

Yes, others have no idea how bad it is. On top of it is the feeling of helplessness wondering how to get comfortable and find some relief. I'm glad lying flat helps. I really couldn't figure out anyway. It wasn't until four days after I started the gab it was better.

I don't play online scrabble, used to do Sudoku and crossword puzzles. I did decide to try Sudoko today for the first time in years, trying to keep the brain active. Well it sure didn't work. As the pharmacist couldn't believe I was awake, let along functioning on this dosage of Gab, I can only do moderate Higher Order Thinking, hence, no driving and family getting a good laugh at me.

 

Thanks Babs

I'm seriously considering upping the painkillers as it's been so bad today it's had me in tears. I've been taking the odd prescription co-codamol (30/500) when it gets really bad but it's barely taking the edge off it. The prescription says 2 to be taken 4 times a day but if I take that much I'll be right away with the faries which to be honest is beginning to sound quite appealing. I can't concentrate on anything anyway because of the pain so maybe I should just go for it......

has anyone any idea how long this acute pain lasts for? Is there a time when it tones down a bit or does it stay at this level? I'd rather know so I can prepare myself and my family. My husband bless him had booked a night away for a surprise over Valentine's Day and I've had to tell him I won't be able to do it - I'm almost 100% sure this isn't something that's going to go away in the next few days! 

I do do think that when things are really bad you have to see the funny side but have to admit I'm struggling really hard to find the funny side of this!

Mynxie,

Often, the acute pain stays for a month to three months. I would consider asking for adjuvant medications such as Gabapentin-Neurontin or Pregabalin-Lyrica, and Cymbalta. These help with the neurogenic pain. A neurologist or pain management physician is often better at adjusting the dose, but your own physician could possibly start you on one of these and titrate the dose up....

Also consider the use of Lidocaine patches-prescription or Lidocaine or Benzocaine Cream topical OTC.

Best Wishes

Merry Juliana

There is a lot of variation but from my perspective, I had three absolutely horrendous days (pacing and sobbing at night) and a lot of pain for about 1 month. For me, the Gabapentin did help with the pain, but the downside was the confusion, incredible fatigue/sleepiness and numb feeling. There were bad days, worse days and better days. I said yesterday I can't measure recover by days, but rather weeks. I'm sorry to be so blunt, but after a few days, I'd have to remember that one or two weeks ago, this hurt more or I couldn't do whatever. I STILL have to do this. The healing curve is very slow, but it will be better, honest.

I'd talk to my doctor's nurse at least weekly, often three times a week as they'd monitor my pain and symptoms. When I hit that bad spell, I was at about a 5 to 8.  A 5 meant a lot of pain, but could get distracted for a bit and enjoy a movie, 8 meant, crying.  So it's been more than 3 months and I'm generally a .5 to a 2 now. Sometimes up to 3.5. Now I only cry about every two weeks or not at all!!

SO, the pain does decrease, the times between the bad pain get longer, and you feel better doing things that hurt previously, but it may be a week or weeks till you reallly notice it.

"When you're going through hell, just keep going." We'll be here, don't worry.

I would say that after a month the pain on my hand and arm was considerably less than it was in weeks 2 through 4.  I had taken the shingles shot several years ago and was told that I should have a mild case, but it didn't seem mild to me.  In months two and three, the pain got progressively less and less.  Now, week 13, I mainly have a healed up patch about rhe size of a half dollar on the palm of my hand and up onto my thumb.  This is still tender but I only have the intense, stabbing pain occasionally.  I was able to resume my normal activities by week four, but I'm retired so I don't have too much on my agenda.  I sleep late and don't cook.  I get lots of rest.

Let Hubby scroll thru this forum!

How true your words were David! The 25g amitriptyline did the job last night and I was almost pain free until about 3pm when it started again. I'm so glad I took your advice and decided to give it another day before leaving my bed as I'm sure it would have set me back. This morning I was thinking I would be fit to catch up on the chores by tomorrow but now I'm not so sure! Do you find yours is worse in the evening after the night time painkillers have worn off?like you, it's not the rash that gives me problems more the deep pain and numbness which I find very uncomfortable 

If you remember, our shingles and pain are in the same place. The act of siting up and getting out of bed activates those muscles and nerves, which set it off. I had a cracked rib and it reminds me of that. I'd lie there, rather than getting up sometimes. Plus, remember there's a much smaller dose of meds in your body in the am.

Yes, late afernoon/early evening is tough. Your body's just more tired and the meds may again be at a lower level, along with your blood sugars. Ebbs and flows.

Yes, the amitriptyline does wear off. I had a relatively pain free night last night but it's jippy again this morning. These last few days I've been taking codeine during the day but I'm going to speak to my doctor on Monday if I've still got PHN pain during the day as I think I may need something to supplement the amitriptyline.

I'm glad that you're reticent about the chores! At the very most maybe do something light but expect a pay-back: the surprise will be if it doesn't come!