Phn 100% Gone For Months... Can The Pain Come Back???

She took tramadol when the pain was bad in the past, and gabapentin. However, none of these medications worked that well for her. She struggled for about 7-8 months before the pain finally subsided

I'm so happy to hear that you're doing much better! I think a lot of it has to do with positive thinking and positive confession. I'm a 100% believer that our bodies follow our mindset. 

My father and I work from home most of the time so we are around to help her often. She rests a lot of the time and takes walks around our neighborhood. 

I am very upset to see that the first response to this thread says that PHN pain comes back after months of being pain free. Then can ANYONE live in peace??? How does that even work scientifically? If your nerves are healed enough to function correctly for months, how come it will just revert back to a damaged state? It doesn't make sense to me. I would understand if the PHN is gone for a few days, but we are talking months here.

Hope7777, I've had my PHN since I was 35, I'm now 66 and it has come and gone through the years. It took decades before I had an actual diagnosis, we thought it was a pinched nerve in my back but finally we figured out what was happening to me. There were years I didn't have any pain, then years when I had the pain and it waxed and waned. I have it as we speak and live with just like everyone else on this thread does.  I, personally, don't think the nerves ever heal....I believe the virus lies dormant until roused by stress or illness and then it wakes and you know the rest. I'm just trying to convey that yes it is a horrible horrible thing to have to endure but thankfully there are, in my case at least, periods of peace.

 

I understand that people can get shingles again, sometimes even without the blisters forming. This is why my mother is going to get the Shingrix vaccine in a month, when they "restock" the vaccine at the pharmacy. Also, there are clearly people who have permanently recovered after a certain amount of time. So why is it that the nerve can function perfectly for years (in your case) and then revert back to functioning abnormally? What is the science behind it? You have to understand this is distressing for me to hear because my mom ended up in the mental hospital and developed mental illness from the pain. She lost her mind from the amount of pain she was struggling with. 

PHN does not typically recur. Since some folks here are saying it has at times recurred, I suppose it does at times. In my own case of 28 years with it, it has gradually decreased in intensity to the point that it is now just a minor annoyance. Now, there is a difference between a recurrence and an exacerbation or flare-up. If I get dehydrated even a little, I will have an extremely intense bout of itching like I used to have years ago. But, this can be stopped with a large glass of water in about 30 minutes. 

So, I would agree with Babs that it is unlikely that a return of the pain will occur. And, I would say that if it did occur, it’s likely that it would not last long. 

And, HOORAY for you, Babs, now having only minor symptoms most of the time!!!!!  I’m very happy for you. When we share positive information it helps all of us. 

Additional info:  Kay is right that the virus stays dormant but can recur when we are under stress and the immune system falters. But, it’s important to understand that there is a difference between shingles pain and PHN pain. Shingles pain is due to the virus attacking the sensory nerve. PHN pain has nothing to do with the virus. It is due to the damage that the virus did to the nerve in the past. 

Yes, we can get shingles again, but that would be a new event, not a recurrence of pain from the original event. 

I just got got the Shingrix vaccination two days ago, when it finally became available here. The producer is shipping out much more of it now, since they ramped up production of it. It requires two doses, 2-4 months apart. Hopefully It will be available in a couple months again when I need the second dose. 

Thanks Charlie. Hope, that's one reason why I posted this. I think your earlier response had two clues for me. One, she's been resting, two gabapentin.

Please realize, we're all a little in the dark here. The more I read and research shingles, pain, and PHN the more I realize even the researchers and experts are still struggling to understand the mechanisms. Charlie gave a good answer. Nerve pain is one of the most difficult pains to control, I've heard that directly from two researchers. But I hold the theory that the more those nerves can rest and settle down, the better the chance for healing and improvement. One of those researchers wrote me "The fact that you began to see improvement in the first three months and that this has continued is a very good sign. Although there are no guarantees, on the basis of the research literature, we would predict that you will continue to improve and that at some point your pain will be reduced to mild or might even disappear."  BTW, that "improvement" was so minimal it took me weeks to realize it was occurring, but it WAS improvement.  He wrote me that  3 1/2 months ago and I've continued to improve, rather quickly. Yesterday I actually permitted myself to think that maybe this WILL disappear. But there are ups and downs, so I won't expect that soon. I've learned to limit myself to prevent over-use of the areas which decreases my pain, for a NON-vicious cycle. I keep active but know which movements just pain hurt and cause flares.

The next issue is gabapentin. I truly believe that this drug can actually increase either the pain, or the perception of pain. I was at 2700 mg in January 2017 and have been tapering since then. I've learned more than I'd like about the drug. First, you must decrease slowly and by small amounts. Each time you decrease a dose, you go thru withdrawal, which increases the pain. People then mistakenly think they should increase the meds. No. It's tempting, but getting off the drug was the best thing you can do for your physical and emotional health.

I'm very optimistic that your mother will do fine in the future. As shingles can recur for some people, quite regularly and  one can get shingles with no rash (like me) maybe the PHN pain some people feel is coming back is caused by something else. Anything is possible, but I think this is one worry, like crossing the street and being struck by a meteor, that you mother can stop worrying about.

Kate, I hope your set-backs get fewer and fewer. I've heard from some people who even after 10 years got almost completely pain free. My allodynia has shown up in the last 8 months, almost a year after my shingles. I used to wonder what the heck that was, now I know. It's intermittent but sometimes I change a top 3 times in 10 minutes. I've finally realized that if I'm feeling fine (mine's in my back/chest/shoulder) but start to have more pain sneak up that I need to take off that top!! I asked that researcher if allodynia is actually present as the nerves start to heal. He didn't know. I admit, I was a bit ticked off! Hey, you're one of the top researchers on this topic and you don't know??!!  That's when I started to realize many of them focus on small elements of the MUCH larger picture. I also started to get a little more disillusioned with the work being done on PHN. But work IS still being done, it's just horribly complicated and it's not like a basic headache--take a pill and it's gone.

Babs 

Thank you so much for this message you have no idea how lovely it was to read it. I’m sorry you are in a similar boat to me! My allodynia started about 3 months after an outbreak ( below my left knee outer part of the leg ; shingles always on the outer part of the left thigh ) I googled everything! When it’s itritated it’s like a bruise with nothing to see. I can’t wear skirts that are at a length where they rub or dressing gowns ( anythingthe wrong length) the light brushing is enough to set it on edge for days! I had a shingles outbreak last week and the patch of skin was “alive”.xx

Glad to read all of the above posts. I have been struggling with PHN about 2 1/2 years. Have tried just about everything offered/available. I have windows where the pain remits and they are wonderful. My allodynia however is extreme. No bra for months and when home no underpants. Often at home just pad around in a nightgown. Still I remain hopeful. And grateful for the love of my husband and family and 2 very close friends. Happy for all who are pain free. 

Hi Babs. Would you be willing to share the name of the researcher you reference? You were the first person to respond to me on this site. Glad to hear you are doing so well.

His name was Dr. Dworkin. He was mentioned to me by another researcher and I came across several articles with his name. I sent him an email thanking him for his work and we corresponded briefly. He very kindly sent me links to various articles about PHN. I learned a lot from them, mainly what how difficult it is to crack the mystery of nerve pain and PHN.