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

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My mother was hit with a horrifying case of shingles on her face from Sep 2017 and suffered until March 2018. The pain has been gradually healing and then since late March, she has been pain free (praise God). She is intensely worried about PHN pain returning.  Does PHN pain come back? Do any of you know any cases where PHN pain returns after months of being pain free 100%?

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  • Posted

    Yes it can and does return unfortunately. Please tell her NOT to focus on the fear of it returning. Try and stay positive and be thankful for everyday she is pain free. IF it does return it may not be as intense as what she experienced in the past. It varies in intensity with some of us. I wish her all the best and pain free days for the rest of her life.

     

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  • Posted

    I've been steadily improving, at first very slowly from shingles in October 2016, but the last few months have gone much better, so I can identify with this. What I've heard is that in the phase I'm in, where you're much better for a stretch (I've gone almost 3 weeks with no pain to minimal pain and I can hardly believe it) it can worsen again. So I'm prepared for that. But I've also known people whose PHN has essentially gone away and only rarely get twinges. It's usually when they're tired or over-do it, such as if it's in the back, they did a lot of lifting. So I'd tell her, that after this long, I think she should relax and it's likely it won't come back. HOORAY!

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    • Posted

      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.

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    • Posted

      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.

       

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    • Posted

      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. 

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    • Posted

      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. 

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    • Posted

      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. 

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    • Posted

      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.

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  • Posted

    Hi. It can go away and stay away. I had it in my neck and took a few years to go away. I can feel it here and there but it was nowhere near the pain it started with ten years ago.  I have come down woth it again in a different area and biy is it wver worse than ever. 18 months in and it has lessoned but it is still bad. I can vouch that stress brings on the shingles attack sonif ahe is fine now she might not have an issue in the future. The key is to find what caused all her stress to break out the first time and find ways to cope or deal woth the stress. Ie breathing meditation or mindfulness. Intense worrying gave me mine both times i beleive. Also fighting my life and job alot. I really beleive it comes from the mind   I have done lots if research on vaccines and would be very careful with going that route. I really beleive if u know what stresses u u can avoid another bout without having to get a shot. Check out this dr called dr bergman. He does a youtube video about the vaccine and it really seems his beart is in the right place. Best of luck and thanks for giving the rest of us hope this thing can vanish. I dream of the day im over this. Good luck

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  • Posted

    Hope7777. I do understand the frustration you must be feeling seeing a loved one go through what your mother has. I have researched this disease endlessly since I got my definite diagnosis and the science is there to explain the "why and how" just not how to totally ameliorate the painful symptoms. There are trials going on even now that may show promising results. Alternative medicine such as acupuncture, etc., may help in certain cases but remember, each person brings their own set of personal genetic makeup to the table and where one will have success in one arena another person may not. It's best to have an open mind and try them all and seek support on the bad days when nothing seems to work. This forum is very helpful on those very days of being at wits end.. at least someone else understands and sympathizes with what is happening to you or your loved one. I've survived this long with it and lived a fairly fulfilling life but I'm on this forum and I too check out the trials and am always checking in on the web to see if anything new has turned up to help treat it. With any luck this will be the end to your mother's trial and this will be over for her. 

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  • Posted

    Hi hope 

    I have suffered from shingles for the last 10 years. I have PHN further along the nerve endings from the actual outbreaks I get. Sadly it does go but it can come back ( mine comes back when I’m tired, run down or when I’m getting another outbreak) it has also left me with allodynia ( extreme sensitivity to clothing )

    Tell your mum to not let it rule her life and thoughts ( it can do so very easily) she should remain as relaxed as she can and therefore reduce any repeat symptoms she might experience 

    Love Kate xx

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    • Posted

      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.

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    • Posted

      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

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    • Posted

      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. 
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    • Posted

      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.
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    • Posted

      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.
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