PHN? Slowly healing? How do you know?
Posted , 10 users are following.
I may have had a (bad) epiphany last night, but some background, again. My first outbreak was late October was minor on my back, then two+weeks later, a small patch on my breast--no anti-virals as it was too late. I then started the typical severe pain, used lidocaine pain cream, Gabapentin eventually at 2400 mg/day, tylenol and a prescription NSAID. I'm VERY slowly getting back my life, but am not driving (Gab Brain), am doing more of the household work but certain things my husband still has to do-no heavy (5lbs or more) of lifting. And gradually doing things like shopping and taking walks.
I've been telling people that I've been slowly recovering from shingles but last night I again read about PHN, and I guess I have to admit that I've got it. It's been four full months. BUT there is a great improvement, which at times makes me hopeful, but at this rate it could be 2-3 months before I'm pain free and off meds! I guess I wanted to deny what as happening.
So is there any clarification as to what to expect, when this may end and more importantly 
if it IS PHN, can I still post in the shingles forum?
On a more serious note, I'm glad that I'm doing much better but realize I have to put "normal" back in it's little box, along with all those things I used to do and enjoy. We have our usual big family vacation in two months and I realized that many of my usual activities may have to be dropped or adjusted.
2 likes, 35 replies
Ellie1943 babs99203
Posted
Hi Babs. I don't think shingles/phn have a 'normal'!The virus seems to have a mind of it's own and everyone has a different experience with it. If Merry sees this post I'm sure she will come on and advise being a fellow sufferer and a nurse. Just continue to rest and allow the body to heal in it's own time. Best wishes. x
Shoe_Lady babs99203
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I have put my "normal" life on hold for 3 years. Beginning to accept my new normal. Traded running for walking, hot yoga for gentle cool yoga, the gym with swimming, scheduling a relax day after 2 full stressful days (if I can at all manage), going to bed as early as possible, eating mostly fruits and veggies raw, meditation, and with everything I do considering wether it is good for preventing shingles or promoting shingles. Very different life I lead now, but I am doing really well. Good luck
Merry19451 babs99203
Posted
Yes, as you have Post Herpetic Neuralgia, you may still post in the Shingles forum. Remember, you still have two months before the family reunion!
Fondly,
Merry Juliana
Millwood babs99203
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gayleen65023 babs99203
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Hey Babs, sounds like you may have a case of PHN, as everything I have read and experienced myself has said that if you have Shingles more than 60 days then you are at high risk of not only having PHN, but your shingles reoccuring. Granted they are not as severe as the first time...Thank God...I am now having my third breakout in 2 years. The first of course was the worst. As I mentioned in my original post the rash, itching, burning pain lastest the first 2 months, but the nerve pain lastest longer. The fatigue was horrible. However, thankfully I did manage to eat very healthy and tried to walk a bit every day. Lots and lots of water and vitamins and loaded up on the Lyzine. I have had some great advice from others and it looks like going dairy and gluten free does help, however sometimes I am not so disciplined. Hope your breakout doesn't last too long and you make a full recovery. Best wishes, Gayleen
babs99203 gayleen65023
Posted
Thanks all. When I come across the PHN info again, I suddenly realized what I had feared for so long. I shouldn't have felt shocked, but I was. I told myself nothing had really changed, I knew it was going slowly, but this somehow made it so much harder. Time to suck it up again.
babs99203
Posted
Since I wrote this, I'm doing better emotionally. Oddly, I found that it's almost a relief, in a perverse say. For weeks and months it was the bogeyman, hanging over me--don't do this, be careful with that or you'll get PHN. Well, I can stop worrying LOL! Seriously, I'm just glad that in my case, I am slowly improving and that I can even (slowly) decrease my gab. I've only dropped from 2200 to 2000 mg in the last 3 weeks, but it's a start. My goal is to be able to drive again in the next week or two. My "gab brain" is getting better, but I really don't want to risk doing something stupid and have an accident, so I'm waiting.
Shoe_Lady babs99203
Posted
Please still be very careful about your activity and any kind of stress on your body, i.e.: exercise, emotional, lack of sleep, diet, etc. I know how great you feel when you start feeling better and come off the meds without extreme pain, and some people will never experience this again. I hope this is you. However there are many of us who have thought we beat the monster, and to our surprise the whole episode returns from beginning to end!! It has taken me years to realize I had to change my life completely. I have not gone back to my favorite stressful activities and I try to do everything to keep peace and balance in all my days. This has helped decrease and lessen the severity of my episodes but, unfortunately not rid of them completely. Be very careful and I'm happy that you are coming off the gab. I do not like that med.
babs99203 Shoe_Lady
Posted
Thanks SL, I HOPE I've learned my lesson, but this is very good advice. The good news is, some of the stressers I had previously are gone. Work has changed, and in fact I may retire soon. I've made conscious decisions to avoid some situations and realize it may always pop back up. One of my best activities I had to drop, is ballroom dancing. I enjoy it immensely and get great joy from it. I'll have a lesson again on Sunday, but as my teacher also previously had shingles, he knows I need to take it very slowly. I know it will be months until I'm at a truly low level of Gab, maybe even a year or that I'll be on a maintenance dose, I can handle that.
Merry19451 babs99203
Posted
Shoe Lady is very wise regarding the entire realm of Herpes Zoster-Shingles and the philosophy of life in dealing with Herpes Zoster-Shingles in a healthy constructive manner.
You are also a positive role model in dealing with this disease for all of us to emulate. I appreciate your reaching out to all the newly diagnosed patients, your warmth, and knowledge.
Fondly
Merry Juliana
pattitracy babs99203
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Millwood pattitracy
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Millwood
Posted
That is PHN. No "om" on the end. Darned auto correct!
babs99203 Shoe_Lady
Posted
Hello again Shoe Lady, I just spent 15 minutes trying to track down your post. Well, I appeared to have over-done it after having 4 very good days in a row. God, it felt SO good to be driving, shopping and enjoying life! I had hoped to cut back on the Gab again this week, but now I'm much more uncomfortable.
So the hard question is: If one feels much better, then the pain increases again, any theories as to if one will feel better again? Will this be up and down but still moving toward full recovery? I'm starting to think not... I have to be grateful that my "worst" pain level is much better than others, that the lower Gab level has helped with my blurry vision and cognitive issues, but right now I'm very discouraged.
Millwood babs99203
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Shoe_Lady babs99203
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Oh Babs, I am soooo sorry. Unfortunately, this is exactly what I was trying to prevent from happening to you. However, I completely understand with the overwhelming excitement that comes with thinking you are getting your life back! The bottom line is, you have a virus. Even when you feel like you don't, you do. You must treat your body, mind, and soul at all times as though you are pampering each one them. Yes, it is common to have the symptoms reappear frequently. You WILL feel better again. The good news is, if you behave wisely during your "feel good" times, you will see that they last longer and the episodes of pain and or rash will lessen. You are exactly right that you must be grateful. Gratitude for your good days and gratitude that your bad days could be worse strengthens your mind and helps bring peace to your emotions which in turn encourages your nerves to relax. So, what to do on a good day?? 1.Do only a LITTLE BIT more than you do on a bad day. Rest after you go shopping. Shutting your body down for 20-30min after an activity does wonders. 2.Enjoy every minute of this day! 3. Get outside. Sit under a tree, plant a plan, garden, etc. 4. Fill your body with fruits and vegetables, especially: mangos, papaya, wild blueberries, red apples, pears, banana, spinach, red and green leafy lettuce, asparagus, green beans, artichokes, celery, sweet potato. 5. Lots of water. Be gentle and kind to yourself daily. This is a journey and you can get through this?
Merry19451 babs99203
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Barbara,
I am so sorry you overdid it, but please remember you are progressing. The key is Baby Steps. Shoe Lady is spot on in her advice to you. You do get back what you have regained when you have overdone it, faster. Don't punish or berate yourself. This is a learning experience for glorious you, me, the magnificent Shoe Lady, and all our friends who are going through this with us.
You are a dear sweet lady.
Love,
Merry Juliana
babs99203 Shoe_Lady
Posted
Thanks SL (I keep thinking you're the Shoe Lady I buy my ballroom dance shoes from, but I know you're not--anyway, that gave you a special place in my heart). I thought the virus was OUT of my body, once it's PHN and not shingles, but yes, logically, it's still there, maybe somewhat dormant, but not gone I imagine.
I WILL take your advice next time (maybe it's finally time for a tatoo). Along with the dratted virus is the depression, either from the virus or the Gab decrease, so that didn't help. But today I am feeling much better physically and emotionally. That feels so much better. When you're down like that, it's hard to remember the good days.
Full confession: I also shoveled some snow. I live in WI and I LOVE winter and snow and it seemed light and fluffy and didn't hurt at all when I was shoveling. Yes, I feel like an idiot. I'll do better.
babs99203 Merry19451
Posted
Thanks Merry, it was a rough four days. Then believe it or not, my wonderful, over-worked husband woke up with shingles AGAIN this morning! When mine was diagnosed back in November, a week later, he got it (2nd time in 20 years). This AM he had me look at his back and it was quite a large rash that came up over-night. He saw the doctor within 3 hours of that and got the anti-virals. So he should be good. I did feel that his stress was caused by my illness which was hard. I've also had a lot of difficulty at work (no surprise, right "oh, aren't you feeling better yet?" in the words of my boss today when I said I couldn't do something yet, "well, that won't last forever!" with a bit of sarcasm. I looked at her and calmly said, "yes it may. I have nerve damage." That shut her up!
Merry19451 babs99203
Posted
Barbara,
It is a good thing I wasn't there, as I wouldn't have been as kind...Sometimes I do wish this plague on former bosses/mean spirited individuals who have no empathy.
I am sorry your husband has this as well.
I was driving from Delaware to Florida and back with a medically fragile friend and her friend who has major mental health issues. I saw my best friend from Kindergarten (Friendship of 61 years) and another friend from Kindergarten. The driving was stressful due to the woman with emotional issues. She had not treated my medically? fragile friend well when I stayed with my kindergarten friend an hour away. I did enjoy my friends' company, however. It is fantastic to be home! I didn't have a Shingles episode while I was gone!
It was warm and balmy in Florida in the low 80s, low humidity....
I am glad you are doing better, now...
Fondly
Merry Juliana
Shoe_Lady babs99203
Posted
😂 I call myself the "shoe lady" because I am like the old lady who lived in a shoe who had so many children she didn't know what to do!!!
I have 9 children and am expecting my first grandchild ( even though I am only 45!!) in a couple weeks. To say the least, I am a little busy and a lot is expected of me.
Trust me, I have been dealing with this for 3 years and I have made many of those same mistakes. (You know, doing the things we love even if it may be too much for us, like shoveling snow 😜
It is very hard to train yourself to think and act differently than you ever have. I feel so deeply for all your losses, but I promise you, you will find new things that bring you joy that fit better in your new lifestyle. As you get depressed, I get very short tempered and the littlest things irritate me. Work with it and forgive yourself?
Shoe_Lady Merry19451
Posted
Wow Merry!! If that didn't bring on Shingles, well then, I think you are in such a good place 🎉 Now that your home, baby yourself and sleep a lot to fend off any post traumatic stress😂.
Shoe Lady
Merry19451 Shoe_Lady
Posted
Dear Shoe Lady!
You are a Sweetheart!
I didn't know that you have insomnia, as well... I have it for at least 7 days before any of my other symptoms appear. I do not sleep during the day when I have it either. I might sleep 2 hours, if I am lucky.
I have been extolling your virtues here, btw!
My trip was wonderful, as I was with a dear friend driving down and back, and saw two more great friends?, and made another friend's acquaintance...Just the one trouble spot....And I don't have to live or work with her... LOL
Love
Merry Juliana
babs99203 Shoe_Lady
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Shoe_Lady babs99203
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😂😂😂