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

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.

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

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.

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.

Read other posts here, it will help.

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

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🤷🏼??? 

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. 

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.

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. 

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.

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.

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.