PHN Pain Triggers

You're so right about fatigue or lack of sleep. It took me a while to realize that. I agree, I can't tell if the fatigue somehow allows the pain to worsen or if I just can't cope with it as well. I've got a big trip coming up in 3 weeks and working extra hours so luckily I figured out I HAVE to keep the stress level down as much as possible and take care of myself to prevent a flare.

Now if someone had only told that tooth that broke and now requires a crown! I'm hoping I don't need a root canal on top of that. Until then I'm realizing one of the few good things about all this is that the Gab is an anti-anxiety med. Otherwise I'd be a bit of a wreck now. I've had terrible experiences with dentists (couldn't hit the nerve to deaden it) so I'm justifiably very apprehensive when I go to the dentist.

Hi Babs,

About the relationships of fatigue to pain, stress to pain, depression to pain, anxiety to pain:  Fatigue, stress, depression, and anxiety all increase our experience of pain.  They tend to "magnify" the pain experience. 

Part of what we do when we are having negative emotions is to focus more on the negative.  Self-damaging, but it's human nature.  When we focus on something more, whatever it is, it seems bigger and more powerful. 

Now, instead of reading this and getting even MORE stressed, depressed, and anxious, use this knowledge in a positive way by turning the process around.  If negative thoughts and increased focus on negative events makes our emotions and pain worse, the opposite is also true:  Focusing on positive events and thoughts makes our emotions and pain BETTER. 

This is strongly supported in psychological research.  It works.  Also, a good antidote to stress is meditation, or deep relaxation. Setting aside a little time each day to learn and practice these has a very good effect on our mood and our comfort.  There are free apps that teach these.

So, PHN is a huge stressor, and for most of us it is one of the biggest challenges we will have in our entire life.  We have to recognize the negative effects of it, but if we stop there, we just feel depressed and powerless [worsening our pain].  It's really important to take it to the next step and start finding what helps and practicing that every day. 

 

To Babs and all others who are interested:

There is a fantastic article in New York Times today, 4/9/17, about making our lives better.  It's not so much focused on pain as it is on generating a more happy and productive life, using simple techniques that are proven in scientific studies.  The title is "Get Happy, Four Well-being Workouts."

I read another article a few weeks ago that was featured on the Huffington Post with similar info. I was able to find this one, thanks. In all honesty, I always have been a very pragmatic, a bit more pessimisstic optimist (plan for the worst, hope for the best) kind of person. The last few months, I've found myself finally falling for that Happy Horse blankety blank, if you get my drift.

If one IS a more positive person, it's much easier to make lemons out of lemonade. But if you aren't and you're in the midst of a very hard time, it's so difficult to re-think all of this. That said, I have purposely tried to find a little good in this every day. Such as, being on the Gab lowers my anxiety about a terrifying upcoming dental appointment!! LOL, but i'll take what I can get.

I never want to minimize what someone else is going through, but if possible, try and see a little light and don't get sucked down too deeply.

"This too shall pass".

I agree that focusing on the positive aspects of your life can improve your pain. I have always been a very positive, "can-do" type of individual BUT after eight years of enduring this horrible condition I fear that it is beating the life out of me!!! My daily existence consists of a drugs, lidocaine gel's, resting, more drugs, more gel's etc. Sleep eludes me and stresses are ever increasing trying to manage daily life being in a severely compromised state. HOWEVER, I seek out the little joys that make me smile and add them up throughout the day then express gratitude for what I am able to do. To all of you suffers, if you can find your way to a positive, joyful view of life it will ease your suffering. I take one day at a time and do not focus on the future, God bless all of you! 🙏🏼

Sheila, and all others on the site,

Thanks for your contribution, Sheila!

One very important thing to remember about PHN is that it does improve with time.  Slowly, but it does get better. 

Also, if you are having a great deal of difficulty coping with this condition, PLEASE consider the fact that you very well might be depressed.  People always want to deny depression, which prevents them from dealing with it adequately.  EVERYONE gets depressed at some point in their life.  If it lasts more than a couple months, getting help will make your life lots better.  It is painful for me, as a psychologist, to see people avoiding treatment when they need it. 

I got very depressed early in my PHN experience 26 years ago.  I got help, really worked on it, and that changed everything.  Not only my happiness and ability to enjoy life more, but also my actual pain experience.  I used therapy, antidepressant medication, and CBT. 

Charlie, In my case the PHN has not improved and has actually become worse over the last eight years for two reasons: my body has become used to the meds and I do not wish to increase the strength again and had to have two surgeries:

1. Open heart surgery to replace valves (31/2 years ago)

2. Hernia surgery (1 year ago) and an abdominal repair were a morphine pump was removed the previous year which resulted in heart failure and pneumonia, also I bled out requiring a blood transfusion. My chest is still wired together and there seems to be nerve damage in the chest region and then other areas where work was done internally still causes pain that feels like nerve damage. The area where the original PHN started remains unchanged and the pain never stops, extremely painful and encompasses a large area from my left thigh/groin up to the left ribs in around of the right kidney. Depression is a problem for me as my existence is a complete reversal of the life I once enjoyed coupled with isolation. Still, after eight years I haven't given up!

Sheila,

Two questions: 

1. Are you using Aspercreme?  It helps to knock the pain down a bit for me and some others.

2. Are you getting treatment for depression?  It is very treatable, and in my experience, usually fairly easy to treat.  There is no reason to continue to be depressed, and depression always magnifies pain.

A few weeks after my shingles started I was REALLY down--it was Christmas and I lost so very, very many things I'd been looking forward to for months. Luckily my employer offered an EAP and I ended up calling them when I finally realized I needed help. I had tried to see a therapist that someone recommended, but there was a 6 week wait!! However, those EAP people were wonderful. Between their support and better pain management, this forum and understanding shingles and the meds, I could deal with it better. There is definitely a connection with Shingles and depression, then throw in the meds which can cause depression and it's a tough battle.  I'm so glad that part is over, though I still get down and discouraged, it's less severe and for shorter times.

Babs,

I'm really glad you went to EAP and got such good help. Most people never use EAP through work. Other avenues to counseling are available whether you work or not:  Community mental health centers are available to everyone in the US. Medicare and Medicaid pay for counseling. Most people think it will be really expensive, but in actuality most folks attend a few sessions and feel better. I went to about 4-6 sessions, then used CBT on my own to manage depression. I still have PHN, but I can honestly say I am a pretty happy guy. It's an annoyance to me now, not a life-stopper. 

My Mistake was getting shingles at the height of the holiday season and before the end of the year. That's the busiest time of the year for therapists (Happy Holidays anyone?) and as I've worked in healthcare for over 30 years, including 2 years for a therapist, I know who the quacks are in town. I almost had to laugh, here I was in crisis, reaching out and the best she could do was offer me her first cancelation, which turned out to be 6 weeks later! My friend offered to give up her appointment with that highly recommended therapist, but as that was still two weeks out, I hated to do that to her. Thank heavens for supportive family member, friends and that EAP.

Hi Charlie, yes in fact I am using Aspercreme and have done for a long time. As far as the depression goes I have used medication, meditation, activity etc. I rather think it's more sadness than depression as I had to retire earlier than I had planned because of this condition. Also discovered that my mood is ofttimes related to how much rest I have had. Some nights the pain is so bad that it's hard for me to sleep. I have researched depression thoroughly and just don't seem to fit in any particular category. For me, focusing on the good things in life and being grateful helps me immensely.??

I too sought out therapy but it didn't seem to be for me. Therapist said there was nothing wrong with me which I tend to agree because I'm a very positive gregarious person. I was saddened to hear that you were stricken during the holidays, that is a shame. We all seem to have our sad stories about this horrendous condition but again, one day perhaps in the near future we will have help!🙏🏼

Sheila,

What antidepressant are you on, and what dosage, if I might ask?  My reason is that docs often undersprescribe dosage and don't monitor depression properly to evaluate the dosage and the individual patient's needs.  You say it is sadness, but you sure sound depressed, talking about having lost almost everything and being isolated.  Neither should happen if you are not depressed, even with PHN. 

Charlie, you may be right. I am taking no antidepressants at this time. There are other reasons for my sadness, death in the family, father crippled and alone in another state, A son with some personal problems that I cannot resolve. So much of it I think is not being strong enough to help them as I was in the past. I try very hard not to be a burden to them. None of my family or friends live in the same state, we are scattered from coast-to-coast. Although today I have decided to get dressed up and go out. It's beautiful and sunny and there's no reason not to get out and enjoy it. One can only stay closed in the bedroom for so long.

Dear Sheila, depression is not about being strong or even about being sad, it's about a dark cloak that takes enjoyment out of life-that makes you struggle to enjoy the things you used to, it's thinking that you've always felt this way and you always will even though you think you used to smile more and have more zest for life. It's also about feeling loneliness and isolation, so you are showing many of the symptoms of depression. There is also situation depression which is depression when anyone WOULD feel depressed as life sometimes is so hard to deal with. I've never cared of that "God never gives you more than you can handle". OF COURSE HE DOES! And not everyone handles it as well as they'd like to. I really question that therapist you saw. See my above comments about "knowing who the quacks are in town". Not every theapist is great, is not every teacher, plumber etc. is great. You have health issues which are very trying and have caused both physical and emotional pain. Yes, you may not be as strong physically or emotionally as you were before, but there is help and a way to feel better.

I'm glad you got out today, that's a terrific start, but as you already reached out once to someone, albeit not the right person for you, please think of reaching out to a professional again.

Take Care,

Barbara

Babs and Sheila,

I'm very glad you got out today.  Part of lessening depression is simply acting un-depressed.  In other words, do stuff you did when you weren't depressed.  Part is exercise.  Sometimes therapy and meds are necessary or useful also.  I pretty much agree with Sheila. 

There's a difference between sadness and depression.  Sadness is short term, and people are able to get out of it for short periods even when it is occurring.  Depression is staying in a low mood for a long time, with few or no breaks.  So if your mood has been low for more than a couple months at most, you are probably depressed. 

You're right that you have stressors such as father's illness, scattered family, and son's personal issues.  But, if you weren't depressed you'd be much better able to deal with these, change or accept them, and still enjoy life a lot of the time.  Also, when we are depressed we focus more on problems and stress, and ruminate on that instead of enjoying life.  That's why CBT works so well:  It teaches people to change those "depressogenic" thoughts and to think more true and helpful thoughts. 

I know I tend toward depression, always have.  So, one weapon in my arsenal is Wellbutrin, an antidepressant.  I just do better on it, and don't almost ever get depressed.  My family has instructions if I'm unable to make my own decisions:  "Don't let the docs take the Wellbutrin away!"  These meds don't "make people happy."  They make it easier for you to do that job.

I have tried a number of different antidepressants and discovered that the side effects were worse than the so called depression that the doctors explain generally manifests itself with sufferers of PHN. Once I was able to get those drugs out of my system I was doing better emotionally and mentally. I get out for a walk every day and as I said in the previous post manage to complete at least one project a day. Still travel on occasion, actually spent seven days in Scotland for Christmas with my Son. I will be going to Chicago to stay with him for a couple of weeks at the end of this month, we have theatre tickets. So I do manage to enjoy some parts of life although I'm in a bit drugged state which I resent. While I am never pain-free, and have learned to endure much of it, I feel it important for all of us to look at ways we can enjoy life knowing we will never have the life we once lived. So many others try to minimize what we suffer that I think we have a tendency to withdraw and try to join like-minded individuals which is why I am so grateful for this forum. We are a group of kindred spirits in the PHN Club.

I don't want to push on the antidepressants, as I'm not your psychologist.  However, I want you to know that most modern antidepressants present minimal or no side effects for most folks.  SSRI's such as Prozac, Zoloft, Paxil and others can cause difficulty with orgasm.  Wellbutrin does not have that as a typical side effect.  It's REALLY unusual to hear a patient say they have horrible side effects with modern antidepressants. 

If you felt sedated, your doc probably had you on amitriptylene [Elavil] or nortriptylene [Pamelor] or a similar "tricyclic" antidepressant.  Those are generally useless for anything other than sleep, in my opinion, and they aren't good for that because they stay in your system all day the next day, leaving you with a "drugged" feeling. 

Anyway, I'll leave it at that.  For others reading this, please don't be afraid of modern antidepressants, they are fantastic meds that help a lot when prescribed at the proper dosage and given a chance to work [takes a month or more]. 

Hi Charlie, I did not say I had horrible side effects only meant the side effects didn't mitigate the perceived depression. I have tried all of the antidepressants that you mentioned in your post. I currently have Cymbalta which is supposed to be for depression and pain but I haven't started it yet. What are your thoughts on it? I am reluctant to take any more drugs than I already am but it doesn't appear the pain is going to improve if I don't continue to try new treatments.

Charlie, I meant to comment in my previous post on your recommendation on Wellbutrin that helps you with depression. Oddly, I had been described that on two separate occasions to help me stop smoking and it seemed to help other than I always had a funny taste in my mouth from it but I was unaccustomed to drugs of any kind at that time. Now having to take all the meds that I do these days I know that that is just part of it. 🤷🏼???

Sheila,

Cymbalta is an excellent med for depression.  I took it for awhile, and I have had many patients who were on it.  For pain, do not expect it to be a dramatic effect.  You will be disappointed.  Instead, expect a subtle dampening of pain after you've been on it for a month or more.  Some people get this effect earlier, but I tell people a month.  I did notice some improvement. 

For the antidepressant effect:  All the antidepressants take 3-4 weeks or more to "kick in," and a couple months to get a full effect.  THIS ASSUMES THAT YOUR DOC AND YOU HAVE ALREADY WORKED YOUR DOSAGE UP TO WHAT IS EFFECTIVE.  Finding that dose can take a couple months or more, so you have to be patient. 

It is common to see PCP's who do not push the dose higher when someone doesn't initially respond to an antidepressant.  They switch the med, rather than upping the dosage.  This is usually a mistake, unless the person has an unusual side effect that is a real problem. 

Psychiatrists are usually better at this, as it is their area of expertise, after all.  It is extremely unusual when someone can't find one of the many antidepressants that work and have tolerable side effects.  If their doc knows what he/she is doing, and the patient really is trying and taking the med every day and giving it a chance, one of these meds will eventually help at some dosage. 

I have seen people who seem to look for side effects, to expect them, rather than to try a med and look for the benefits.  All drugs can have side effects.  Antidepressants, the modern ones, usually have very few and mild ones.  Also, it is common that someone reports initially some side effect such as "feeling jittery," and after a few months on the med either loses that side effect or tolerates it as a mild annoyance. 

Because I want you to feel better, Sheila, I am hopeful   you will try Cymbalta, only when you are ready, and that you will stay on it and work with your doctor.  If the beneficial effect is mild or you can't initially see any, that you will continue to work with your doctor and really find a dosage that does work, for you personally.  When the medication begins to work, you might see a little less fatigue, a little more energy, a little more tolerance of difficulties, more interest in pleasurable activities and getting out, improved concentration, and [if you had been having any thoughts of dying or suicide] no more such thoughts.  Of course, all of these WON'T happen immediately, or even all at once later on, but most likely when the med works SOME of these improvements will begin to gradually occur, with more jumping in later the longer you've been on the helpful medication.  And they add up to significant improvement in life. 

Sorry to go on an on.  I get passionate about depression, and making sure people get better from it, because I've been in that state and I don't want anybody to have to go through it, or to stay in it.  Nothing made me happier in my career than seeing someone come out of depression and stay out!

I'm on a lot of Gab yet, 2000 mg, and I had two pharmacists suggest I add Cymbalta as it can help with pain and I could possible decrease the Gab. I too am very reluctant to add more meds, but as I am doing better without adding it, I'll pass on it.

You also mentioned you're on a lot of meds. I realize that often is necessary but I hope these are being closely monitored by a doctor who knows everything you're on and a good pharmacist.

Thank you Charlie, I knew you would have the answer. I don't think that I am suffering from any sort of depression and I do not have the personality type conducive to thoughts of suicide. Life is too beautiful, and I'm a Mom! I am quite sure that the opiates cause my fatigue, lack of energy and difficulties concentrating. Met with my pain management doctor today and are switching the meds around so that I can get off the high doses of OxyContin and Oxycodone. Of course, I have to titrate down first and then make the switch which I think I can accomplish in two weeks. I will let you all know if the new protocols improve my particular situation.

Hi Babs, I only take 1200 mg of Gabapentin a day. I'm also on OxyContin ER and Oxycodone but I am a very conservative user because they are nasty drugs. I have been battling this nerve pain for nearly 8 years and have tried many different applications. I also suffer from disc degeneration, herniated disc's, two ruptured discs, osteopenia, extreme lordosis and spinal stenosis, to include arthritis from the base of the neck down to the hips. That pain in and of itself I can manage much better than I can on the nerve pain. I am now trying meditation and deep breathing exercises during the really bad periods instead of popping a pill. However, there are times when even the medication doesn't help. Pain 24/7, never have complete relief. I don't know about the rest of you but I'm up three and four times a night awakened by pain. I continue to pray, research, read all of the posts in this forum, ask questions of all doctors I encounter and will share whatever I discover.🙏🏼🤷🏼???

Great news that you and your doc are decreasing your opiates!  I've not seen many people have good results on long term use of them. 

Charlie, it was at my suggestion to the Dr that I employ a less toxic med regime and advised him that I no longer want to take ANY drugs. I will have to take the time to titrate down slowly as I know from past experience that stopping the drugs too soon presents with severe withdrawal symptoms! Interestingly enough this past week I have cut my meds in half and experienced less pain. I had determined that the oxycodone seems to actually cause pain. I did some research and discovered that can be one of the side effects! I am thrilled that what I believed is true, Dr. concurred. He recommended Fentanly pain patches. In past years I refused to even consider it, I did fill the prescription but may attempt to manage my pain through natural means. Anti-inflammatory diet, light exercise, rest and meditation. May lose a few nights sleep but I can recover from that. Hopefully, this post can be beneficial to others on opiates. I will continue to update everyone on my progress.

It is quite well known that opiates, when used long term, can actually cause pain.  It is common to see patients who get off opiates and stop having the pain they were taking it for.  It is called rebound pain.  This is one of the many reasons opiates are questionable for long term use. 

So, your doc is going to use Fentanyl to detox you?  Hopefully not to just switch you over to it, as it is a very powerful opiate. 

Hi Sheila,

I think you would be wise to try other means to relieve your pain rather than the Fentanyl pain patch. Fentanyl is the strongest opiate there is and could cause you more harm than good. It's also very addictive. As Charlie and others including myself have pointed out, talking to a therapist, relaxation exercises, eating a healthier diet and many other natural methods can help with pain. Good luck. 

This is wonderful and courageous.I'm tapering from my gab, but even going from 2000 to 1900 causes me problems. I keep telling myself that it's necessary and it will pay off.

Yes, I couldn't agree more, hence my quest to eliminate all meds and opting for a more natural means of managing the pain. As I said in my post I'm titrating down on the opiates but have the Fentanly patches available, inclined to not transition to the patch. It will be a matter of being able to manage the pain without any sort of meds.

I have suffered for nearly 8 years and have refused the patch each time offered. I am almost sorry I had the prescription filled because I'm well aware of the consequences of Fentanly. I will update you all as time goes on.

Charlie, I was aware of the rebound pain and that's why I opted to stop instead of switch to a different opiate. Not my doctors idea, mine. I have spent untold hours researching this horrible condition and know what the options are, but I do believe natural healing. No more drugs!

Charlie as I said in my post I may not use that at all. It is at 50mcg Fentanly patch which from what I understand is the lowest dose. Dr prescribed it to me to replace the use of OxyContin ER, not to titrate down. Did I mention that I have a number of inoperable neck, back and hip conditions as well which are nearly as painful as the nerve damage? I still maintain that with vigilance, utilizing natural means, I can control the pain without the assistance of meds. Or at least that is my goal

Tiffany, I couldn't agree with you more. And as I just posted a reply to Charlie my plan is not to use any drugs. Although the Fentanyl patch is the lowest dose my body is already addicted to the opiates which is the reason I'm titrating down. As of this date I have cut my the meds by 2/3's in little more than one weeks time, utilizing more natural means to control the pain. I have suffered some withdrawal symptoms but nothing that I cannot handle. My quest is to eliminate all meds. Thanks to everyone for your concern and advice.

Babs, fortunately gabapentin is not nearly as dangerous or harmful to our bodies as are the opiates. Because of the nature of nerve pain and the severity of it most pain doctors will try all other means before resorting to the opiates. At least that was the case with my doctor. Remember I have been at this for nearly 8 years . And while the opiates particularly the OxyContin extended release helped immensely I knew I was getting into trouble. I have always been an individual that went to the health food store when I was ill as opposed to a doctor. When my back would be so compromised that I could barely walk I would attend Yoga and Pilates 3x's a week. Also opted for acupuncture. It wasn't until the shingles damaged my nerves that I was unable to get control of the pain. So doctors put me on the gabapentin and the antidepressants and we slowly moved into low doses of opioids. I knew it would be disastrous because our bodies become used to them and we have to keep increasing the strength/dosage which is exactly what we did until I said enough. Now I'm reversing my treatment to use any other means to control pain and eliminate the meds entirely.

Charlie, so sorry it has taken me this long to respond to your questions. Yes, I use Aspercreme with lidocaine, I even have all natural horse liniment which really helps. I have a TENS machine as well but that aggravates the pain. A gel ice pack helps somewhat. I have addressed the depression and have tried few different antidepressants that either made me ill or so fatigued that I could not lift my head off the pillow. I’m currently in the middle of a major move and will seek out help for depression when I am settled again. This move is an attempt to decrease the pain by leaving a very hot, humid climate with sudden weather changes: South East Florida to Tucson, Az 🌵 where the weather is fairly consistent and dry.  I am struggling with severe arthritis as well and a hot dry climate is indicated. When storms move in off the ocean, which is where I live now, I am completely immobile and in utter agony.   Sleep eludes me, hence fatigue consumes me. But every day I manage a few tasks and rest in between. I refuse to let this beat me even though I’m in my ninth year. PHN coupled with the arthritis and severe back/neck problems have literally destroyed my life but I am still alive and have a wonderful family so I refuse to succumb.  Of course, we all know that aging plays a role in many of our difficulties, I am nearly 68. Do not know what happened to those years but I plan to live many more🤗 

Information about antidepressants, to use if/when you are interested in giving them a chance again. Nausea is a somewhat common side effect with SSRI’s such as Prozac, Paxil, Zoloft, etc.  Fatigue or feeling tired in the day is very common (about 100%) with older meds, the tricyclics, such as amitriptylene (Elavil), nortryptylene (Pamelor), and Tofranil. Wellbutrin (bupropion) extended release (XL) has the lowest side effect profile of any of the antidepressants in my experience, and works every bit as well. Most people I’ve treated responded best to 300 mg, XL, but work with your doctor. 

Hope you enjoy Tucson. Weather now is pretty nice there.