Why DON'T I hurt today? I should, but I don't, what's the science and how can we bottle it?

Posted , 5 users are following.

I first had shingles on 10/26/16, and have had PHN in my back and chest since then. I take Gab (down to 1300 mg/day),a prescription NSAID I've been on for 3 years, Asprecreme 3 X daily along with Extra-Strength Tylenol. Like you, I've had terrible stretches of pain, have had to quit work and pace myself. However, I've been slowly improving, but have good days and bad. One thing I truly missed during all this, is my ballroom dancing and private lessons. After also dealing with time-off due to injuries on top of missing months from the PHN, I'm finally back to dancing once a week.

I've gone slowly, avoiding certain moves, figures and holds to prevent the PHN from getting worse, During class today, many times I took a few second break to "shake-off" the pain (my teacher asked me if my hands were numb). It doesn't really help, but it's a distraction. BUT hours later at home, I realized I forgot to take my Aspercreme and Tylenol because I had no pain! Usually at 4.5 hours, I'm getting uncomfortable, then after 5 hours, it's definitely noticeable. Today, 6 hours later, nothing.

How can this happen? I hurt during class, but I also had a blast with moving and stretching in ways I haven't let myself do in over a year. I should hurt! Is it the endorphins? Increased blood flow? WHY and what does this mean for dealing with pain? I know that distractions definitely help us from focusing on just the pain, but I stopped dancing 3 hours ago. I've noticed this other times too. I DO soak my feet in ice cold water (lterally. Lake Michigan is only 33 degrees and 1 mile away. That's where our water supply comes from) after dancing, but that was only my feet.

Charlie, any ideas? I know tomorrow or the next day won't be like this. Maybe I just have to dance every day (what a dream come true.)

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24 Replies

  • Posted

    Glad for you Babs! The last time I felt like that I was attending one of my grandson’s soccer games. It was a beautiful fall day and I was able to sit for most of the game and really focus. Hope and pray you have turned a major corner.
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    • Posted

      At least I had a good day. Yesterday was terrible. Not necessarily a bad day for pain, but emotionally, I was a wreck. That damn Gab and it's side effects. I was as down as you can be. Well, if you take it, you know the side effect I mean. I don't want to alarm anybody, I'm fine and I'm safe, but I HATE what it can do to your mind. I have to remember when those days happen, they do not last. I do not feel that way every day, but it's so hard to remember that, literally, when it also affects your memory and processing. Jeaneen, you WILL have good days and better stretches. We just don't know when or how long. I hope you can look back to weeks or months ago and realize there are small improvements. Once I see that, it helps.

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    • Posted

      I take Lyrica, also an anticonvulsant, and I really dislike the way it makes me feel at times. I feel like I have “fog brain”. I tried backing off on it once and my pain was horrible.

      Still so glad you were able to dance today and I hope your evening has been comfortable.

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  • Posted

    Kind of a mystery, but a nice one to explore and learn from. Hydration has a huge effect. How we are thinking is also a huge contributor. No doubt some other factors as well. 
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  • Posted

    I'm still feeling pretty good today, but I don't want to test my luck. We're getting heavy snow in WI, and I LOVE being out in it and shoveling (I need the exercise). But I don't know if I'll do any of that, I'll let hubby. I know that dancing helps, but I wonder if these changes and fluctuations are also tied into that damn Gab. When I drop, I seem to have some predictable changes to my mood (sometimes they're quite extreme), pain level, fatigue and fogginess and vertigo/dizziness. Some months are worse than others. They'll hit me for a few days, then go away.  It's usually worse 10-20 days in, not when I first drop.

    But wouldn't it be wonderful if a new one is decreasing pain? I think I mentioned this a few months ago, and tho it's not a narcotic (when did we all start saying opioid instead??) maybe it can screw up the pain levels also.

    If I could, I'd dance every day, but my instructor does have a life and there aren't many other opportunities. But at least now I'm doing it twice a week.

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    • Posted

      Babs. Don’t shovel snow, but keep on dancing. Snowing here too. We use our snowblower! Which of your meds is new?  I think not knowing  day to day how well we can function, certainly affects mood. I know it affects mine. I use to think of myself as very resilient, not so much since PHN hit.
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    • Posted

      None of them are new. I've been on Nabumetone, my NSAID for 25 years, the Gab started October 2016. By "new", I meant a new, positive side effect or outcome from this PHN. That was confusing. If I shovel, I'm very careful to do more pushing than lifting and twisting. I just want to move some of the snow away from the house so that my husband can use the snowblower. I used to cross-country ski too and this is the first really good snowfall we've had in years. WI isn't quite the winter wonderland people think.

      I agree, one of the worst parts of this condition (among many, actually) is feeling like a frail, decrepit person. Without realizing it, I physically and emotional withdraw to avoid more pain or embarrassment. There's nothing like starting to cry in front of acquaintances because of the meds and pain, right? I used to go years without crying, now, anything can set it off. Or for once, trying to do some little thing, then paying for it a few minutes later as the pain starts. BUT yesterday was a very, very good day and I'll have more, I know...I just have to remember.

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    • Posted

      There is certainly a sense of loss with enjoyable activities curtailed. We retired to our home on a lake. I had started doing some kayaking with my husband and that is out. Anything requiring repetitive motion is a trigger for me. I had hoped to garden, but have had to settle for putting a few flowers in pots. I belong to a book club (we meet monthly) and a Women’s club that meets once a month for lunch. Have met some nice women but being in pain for parts of each day makes forming new relationships difficult. I read a great deal and my husband is wonderful! I try to focus on something positive each day. But like you, I cry more than I ever have.  Have 3 great kids and 5 grandkids and they are a source of much joy. Hang in there Babs. I envy being able to dance. Jeaneen 
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    • Posted

       Babs and all others on the forum regarding my previous post which I inverdantly before I edited it, so sorry. Hopefully, you can all understand the post and overlook my errors.

       

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  • Posted

     Babs, I’m in my ninth year of this her Hcondition coupled with some other medical maladies that cause chronic pain. Mornings are best for me as the sun Wayne’s the pain increases. Nighttime rest eludes me as it is only intermittent. This forum has help me a great deal and that it has reduced my isolation  as I have to pull back from many of my friends because I cannot impose on them to understand that I need to rest throughout the day. Sadly I’ve only had to pain-free days in nearly 9 years and I call those “Tuesdays“ because the only day I can remember where I had no pain at all was actually on a Tuesday. Since the onset of the shingles and subsequent pH and I have had two other surgeries which further damage my torso region to include being wired together after open heart surgery. I am only 67 years old  and struggle daily to seek out those little things that bring me joy. One thing I can recommend for all on the forum is I bought a hospital like bad so that I could get comfortable. I am unable to lie down or sleep on either side so I sleep in a near sitting position but that comes with consequences as well. I have tried every conceivable remedy to reduce this pain but always have to fall back on opiates and as we all know the side effects are horrific  however, without them I’m completely disabled. I still hold out hope that one day there will be help for us because it is a miserable way to live in fact it ruined my life but I do manage to make each day count in someway whether it’s a single project reading a book. I have to hire much of my household and automobile work done because I’m no longer able to do it. 
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    • Posted

      I saw your apology about the errors, do you think any of us care dear LOL!!! Call it Gab Brain, PHN Brain, whatever, it happens a lot. I'm sorry you seem to have one of those really difficult cases. I almost feel guilty coming here mentioning that I've seen improvement, but I wanted to offer hope to other people that it often can get better. On my good days, I look back and see what I can do more easily or with less pain now, than I did months ago.  I hope you've been able to see some progress.

      While physically, I've still been having pretty good days this week, but mentally, I'm having more depression, fatigue and a feeling of fragility. Hey, can't it all get better, do we have to "balance" it like that. Not Fair! As Shingles and Life is so VERY fair, right all?? Hey, I saw a terrific movie. The Post with Tom Hanks and Meryl Streep was outstanding, gripping and suspenseful. I highly recommend it. Afterwards, several us of starting talking about it and our memories of those days.

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  • Posted

    Can anyone HELP me with treatment ideas??? Has anyone tried 8% Capcacin treatment??I am a 46-yr old female,  athlete and full-time employee on long-term disability due to severe shingles  (3 months of outbreaks in spite of anti-vitals) and now PHN.  I have to go back to work full-time in 4 months!   Its ruining my life and I can't live through this forever.  I wish it would just kill me but I have a wonderful family to love and support.  The pain is horrific. Constant in spite of 600mg Lyrica and Nucynta at night (opiod).  I am still working part-time and its so hard.  I have tried all the drugs possible.  HELP!  I have to go back to work b/c we rely on my medical benefits.  I have had PHN for 6 months.  I don't feel ANY BETTER.  Will I have this forever?  Please help me. 

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    • Posted

      I’m sorry. This is so hard to deal with, isn’t it? But you’re not alone. I just have time for a few comments . First, there is no easy, quick way out of this. There are a few things that can help, rest and avoiding whatever makes it worse helps. Capsaicin may help. Most of us haven’t tried it as I’ve read it will likely cause greater pain and burning  before it hopefully counters. Some have had good luck with it. More of us have had good luck with lidocaine pain patches or cream, I use Asprecreme three times a day.  Lyrica or Gabapentin are often commonly used. Some have better luck with one or the other. I also take Tylenol three times a day with Gabapentin also three times a day. Time should eventually help but everyone is different. For some it’s months, for others years they have to deal with it. Measure your improvement by small gains, accept that you need to be good to yourself, take it easy,ask for help,rest.

      Read other posts here, it will help.

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    • Posted

      Hi Kwellness,

      Sorry to hear of your difficulties. We’ve all been through something similar, so we can empathize. Mine has been for 27 years now. Not to scare you!  It’s important to know that PHN does decrease in intensity with time. My symptoms, while very severe at first, has decreased to a point where it is more of an annoyance in my life now. Some of that is due to time, some to learning to manage it better, and some is due to getting control of the depression I originally had with it. 

      I decided early on to avoid oral meds, so I’ve since managed pain and itching with topical creams/gels. Aspercreme and lidocaine gel were my best friends. Currently I’m discovering that an eczema cream helps even more:  Triamcinolone acetonide. It’s an anti-inflammatory cream. Making sure I’m well hydrated has helped a lot with the itching. And using cognitive behavior therapy (CBT) changed both my mood and my pain level. Where once I would have described my life as you do today, my life improved vastly when I began using CBT. It’s a mainstream therapy, and can be accessed through a therapist who specializes in it or from numerous books on it. 

      So, try the topical creams and gels. Like any treatment, they will not erase pain and other symptoms, but they probably will help. Managing this thing is a matter of finding things that work partially, then adding them up for better control. And changing the way you think. 

      Charlie

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    • Posted

      Hi Charlie, as always you give very good advice. I am embarking on a meditation therapy to see if I can’t control some of my pain. If it was just PHN I could cope but after a recent surgeries with unexpected complications I have further nerve damage.  Also, the deterioration of my spine has become extremely debilitating but I still hold out hope, and I refuse to give up ever🤷🏼??? 

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    • Posted

      Meditation is a very healthy path for pain management.  Use CBT also for even better success.  Here's a list of books someone asked me for on another thread on this site:

      Here are 4 books:

      Mind Over Mood, 2nd edition:  Change how you feel by changing the way you think.  Greenberger, Padesky and Beck.

      Retrain Your Brain:  Cognitive behavioral therapy in seven weeks.  Gillihan.

      The Anxiety and Worry Workbook:  The cognitive behavioral solution.  Clark.

      Cognitive Behavioral Therapy:  Seven ways to freedom from anxiety, depression, and intrusive thoughts [Happiness is a trainable, attainable skill].  Wallace.

      Look for these and others on Amazon, and check out reviews and samples of the book. 

      If you look for a therapist to help you, ask if CBT is their "primary approach to therapy."  On search sites, I've found that most therapists will say they use CBT as well as many other approaches.  But usually they don't do a great job of it unless it is their primary specialty.  You will know if your therapist is using CBT by their focus:  They should be asking you how you think about some situation, and then helping you to think differently when your thinking is making you more anxious, down, etc. 

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    • Posted

      Well, life sure changes. I wanted to update this and see when it was I felt so good, I thought maybe I just dreamed it. So, 26 days later and 2 weeks post 100 mg gab drop, I've got more pain again. Six days ago I had a dance lesson and it went poorly. In the days leading up to it, I'd had more pain and low feelings, which was expected after decreasing my gab. But I was exhausted during the lesson and my mood worsened and I got feeling more discouraged and overwhelmed. After one fox trot, my instruct just said "hmmmm". That's NOT what I usually hear, to say the least. So. All good things must come to and end I guess. Usually I'm upbeat and energized after a lesson and so grateful to be able to do this again.

      I don't know what's happening. Is it the drop and I'm now I'm on too low a dose? But I'm still on 1200 mgs, or is it SAD? Or am I pushing myself. God only knows. But I felt so good 10 days ago. The pain itself has changed. My mind is much clearer, but the pain is more immediate, sharper and gets set off more easily. This must have to do with the lower Gab dose as the brain and nerves are reacting differently now. I had increased my activity the previous month as I felt good, had energy and really felt I'd turned the corner. I've got to back off again.

      So, I may tell others, this is a long road, there will be ups and downs, but I thought I was past it. So, here I am, frustrated and discouraged. I think I'll have to cut back and wait it out, but boy, this stinks.

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    • Posted

      Depression is a possibility.  You talk a good deal about low feelings and discouragement.  Depression is strongly associated with pain magnification/exacerbation.  When I had serious depression, and then went on antidepressants, I found the pain much easier to manage once the meds took effect. 
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    • Posted

      Yes, there is that element. I’ve had problems in the past to a mild degree and the Gab definitely cycles me thru it.  But this is different. It’s like earmuffs. When the Gab/earmuffs are on or at a higher level, it’s less noticeable or muffled. Now it’s more aggravating and immediate.  I always wondered if the med drop and pain drop followed the same curve. I think right now, it’s not. But I’m not increasing the Gab  and it’s very likely in a few days it will moderate. As a wise man said, it’s just for today. Right?
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    • Posted

      Hi Kwellness,

      I saw your other post today also. It’s pretty clear you are depressed, “despondent” as you say. Please read my post above, starting with talk about meditation. Look for a CBT therapist and talk to the therapist about getting on an antidepressant. Not an old one like amitriptylene, a newer one like bupropion or celexa. If you’re going to succeed at return to work, you’re going to have to get control of depression, and doing so will help you manage pain better. 

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    • Posted

      I've got good news on two fronts. Yes Charlie, I finally realized I needed help and I'm now seeing someone. CBT and your name came up several times and she's WONDERFUL! When I hit that wall two months ago, I think it was because of the Gab drop. The pain and my perception of it was different, but I definitely had neurological (?) problems too. About a month later, I had a crying jag, totally new to me, and a dear friend happened to call. We talked for about an hour, she asked if she could call her therapist to see if she had an opening, I said yes, and here we are. Ironically, after about 15 minutes of talking to my friend, the switched flipped and I felt better! That despondency hasn't come back, but I know it may. However, Angela and I are working on tools to help me deal with acceptance and how to cope when it happens again.

      I seem to be in that group who are very affected by the gab tapering, I'm down to 1000 mg now, and my mind and memory are much clearer. The other good news is that, as of right now, my pain, again, is MUCH better. I do think that the PHN is improving, but that that can change too.  I'll try and handle that when it happens. My trifecta after a taper is: more pain, confusion, fatigue and depression. But now I wrote down that THIS HAS HAPPENED BEFORE. THIS WILL NOT LAST, I WILL GET THROUGH THIS AND BE BETTER. Knowing that I could have a good stretch after 8 solid bad days, was a God send, as all of you here are too.

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    • Posted

      Please read my newest post, I hope it gives you hope. This is NOT a straight road, there may be lots of downs, so you can't notice the ups. But there ARE ups. Please consider seeing someone, and the RIGHT someone. Charlie's info helped me so much, but I reached that point that I knew I needed more tools to handle the tough times. Believe me, I was VERY resistant to that, but it's help me and my husband. This mess is more than one person can handle.

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    • Posted

      Babs,

      that IS great news!  I was just about to ask how you were doing, so I’m glad you posted your story. I like the true and helpful thoughts you list below also. 

      People are usually scared to death of going to a therapist, but when they go their  experience is usually a lot like yours. 

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