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
babs99203
Posted
Merry or Shoe Lady--advice ASAP please? Hubby was diagnosed on Friday with the shingles, again, if you remember. He's on the Valtryx but I just looked at his rash and it seems very atypical (if that's possible with shingles). It supposedly follows his left lower cervical/upper thoracic nerve, so it goes from the back to the front and on the shoulder/neck area. However, it seems to pass the mid-point in the front and go past it about 4 inches. I thought that the rash (I had almost none) was supposed to stay on the one half of the body. Is this a mis-diagnosis?
We can't think of anything else he could have come in contact with for contact dermatitis, no new foods, clothing soaps or detergents. The rash does seem like they are vessicles. So far our Doc has been spot on, so this really threw me. No fever, he a little itching, no pain.
Anyone else have any ideas?
Shoe_Lady babs99203
Posted
I am one of those "atypical" people who get it on both sides. I know many do not believe it can cross the midline, but I get it like an exact mirror image. The stabbing pain and tingling of my skin is exactly the same. The flu like symptoms and complete exhaustion and insomnia, is exactly the same. I have found that shingles does not follow any rules and in my opinion I believe the virus has evolved over time and they stick to what they first discovered about it as the law. I am reading a book right now that talks about 31 different strains of shingles! The most accurate thing I have read so far! I send my prayers to your poor suffering husband?
Merry19451 babs99203
Posted
Shingles does indeed cross the midline, even 4 inches. Many individuals have Shingles on both sides, which confuses the Physicians. It is a misnomer that Shingles only occurs on one side.
If the rash appears like Herpes Zoster-Shingles and follows a dermatome pattern, then it is Shingles. It occurs in different discrete dermatomes on both sides of the body. Shingles does not read the text book... Only foolish physicians believe that Shingles follows the set of rules.
We the patients know better...
Fondly,
Merry Juliana
Millwood Shoe_Lady
Posted
babs99203 Merry19451
Posted
Thank you SL and Merry, that's a big relief. We'll sort of--at least we know about shingles. Yes, I too would like to know the name of the book.
Healthywoman Shoe_Lady
Posted
Hello everyone
I'm glad I found this forum. I will share what I have found to be helpful. Please don't take my advice. Check if interested and decide.
OTC Lidocaine cream 4%
Super Lysine liquid extract
Super Lysine tablet
Pure essential oil - helichrysum There are other pure essential oils that seem to help with nerve pain
If using ice, place on top of head or opposite side of pain .. same with heat
For teeth neuralgia, clove oil has been helpful, also metaluca
People have different health conditions when getting shingles. My experience and uses may not be appropriate for everyone.
Hope this will help.
Alowell1 babs99203
Posted
I was glad to find a recent thread on this as I'm struggling with it. 3 flares since last June & I finally know the proper diet but the stress thing is gonna be the death of me!
My PHN was still with me from the first so it feels like it gets worse each time. Also my toes go hot & cold by the hour & I only had the rash with the first flare. Anyone else have this specifically? I also have headaches, constant eyelid twitching, & some other issues It took me until last week to even figure out what's plaguing me as the doc couldn't diagnose the first rash!., grrrr
i also wonder if I have autoimmune issues as I'm only 45 & very healthy & fit? I can't tell yet as most of my issues seem to be from good ole zoster. I did have a huge stressful event that began all this. Thanks for any thoughts!
babs99203
Posted
I posted this in a different forum but I thought it may be helpful to others. In the two months since I created the forum, I have continued to improve. When I posted it I was 4 months post-diagnosis. I have also gotten much more realistic about how long I will continue to heal and to what degree. I haven't been able to drop my Gab as I had hoped, but I am almost pain-free much of the day. I expect to be on the Gab and cream until the fall, or later. But I AM enjoying life and have gotten back 75% of it! Here's my other response.
"I AM NOT Pollyanna, look on the bright-side type of person. I am pragmatic, analytical and highly-skeptical, type A so trying to figure out why on earth I'm not healed and why can't I fix this becomes wearing. However, I've finally learned to acccept the small improvements, the gentle glimmers of hope. I have even written down what positive changes I see, not matter how small. If a month ago I couldn't drink without a straw (the glass was too heavy) and now I can, that's huge! If now I can go 5 hours between meds and cream, another sign of progress. I only started driving a month ago, and now I can drive. I can carry my purse without (too much) pain, etc.
I started 10/25 and am still on 2000 mg of Gab, Extra strength Tyelenol every 5-6 hours (used to be 4 hours) and same with Lidocaine cream. I also take a prescription anti-inflammatory which helps (it was prescribed 20+ years ago). Also, I'm 61 and did not get the antivirals, otherwise in very good health, had some minor depression issues but had some nasty stuff with this condition and the meds.
MANY people don't improve at all after the 2-3 month window so I have to believe I am still healing. I feel very lucky that I am, and it seems you are too. We just have to be very patient, avoid things that make it worse, but push ourselves a little to get more strength and feeling of control in our lives. I am back to my passion which is ballroom dancing. I took it up four years ago, but only seriously about 18 months ago. I smile, I laugh, I challenge myself but most importantly, I don't feel like an invalid. Can you find something that gives you that joy?
Take good care, and don't stay too discouraged too long."
Barbara.
bsue babs99203
Posted
Hello... Started my opthamolic shingles/phn journey Dec 21st and was diagnosed Dec 26th. After months on gabapentin, which truly was masking everything and not really helping to do anything but make me sleepy - I still was very uncomfortable with excrutiating, at times, itching. So I took myself off the medication (not for everyone nor should it be) and started taking herbs that address the nerve inflamation - vitamin c, stinging nettle, and Quercetin with Bromelain, plus drinking stinging nettle tea with citrus rinds, in additon to acupuncture. I also started walking. After about a month I did notice some improvement but the real help came 2 weeks ago when I discovered Hemp CBD cream, which btw is THC free. It isn't cheap, but it's not totally outrageous either. You can find it online. The problem isn't totally gone but my forehead and around my eye has some periods of normalacy. Also before finding the cream, I was using coconut oil for relief. It did a good job of relieving the agonizing itch as well. In sum, things aren't perfect but I'm getting better. I hope this finds you too feeling better.
babs99203 bsue
Posted
I'm glad you found something that helped. I was just reading that the post-itch is actually harder to treat than the post-herpetic pain. I'm still dealing with it. I've cut back on the Gab, down to 1800 mgs/day, still using the other meds. I am VERY slowly improving, but it is improvement. I'm back to more of my normal activities, like you I'm walking, also able to do my ballroom dance lessons and easy competitions, which is a tremendous help. But I still have limitations. I quit my job, it was too hard. As I decrease the Gab, I'm getting miserable side effects (increased pain, depression, more memory issues) but I want to get off the meds. As the body re-adjusts, I am doing better, but there's about a week or more where it's more difficult.
As long as I see any improvement, I try to not be too discouraged, but it is hard. Some people don't, so I'm still grateful.