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jeaneen09890 jeaneen09890

Pain contol

Good morning all. Yesterday was a rough day for me and I threw  everything in the arsenal at my PHN. Routine Lyrica (take 400 msg daily), put on two lidocaine patches, used my heating paid and took (over 24 hrs) a total of 30mg of 10/325 oxycodone. Finally got some relief.  The pain med use is a catch 22 to be sure. I would like to taper but on days like yesterday that seems unlikely in the near future.

Interestingly I had developed a rash on my arms and legs last week and my NP called in a cream for me. It is the same cream Charlie has been using. Small tube and coat only $4 but I, like Babs, have a pretty large portion of my body to cover. Have never tried Aspercreme may give it a try.

I know it is a highly sensitive subject, but have any of you had experience with opioids to control your PHN pain?

30 Replies

  • charlie58834 charlie58834 jeaneen09890

    Regarding the triamcinolone acetonide cream, don’t put it all over the entire skin area affected. Just a very small bit in the most sensitive areas works well for me. 

    Opioids:  they will work well initially. Then you’ll get less effect with longer term use. Opioids work well for acute, or short term, pain. Not so well for longer term pain like PHN. Along with decreasing effect with long term use, opioids are well known for causing “rebound pain.”  This is a syndrome in which the pain med actually causes more pain. I cannot tell you the number of times I’ve seen patients who are having uncontrollable pain, but experience a decrease or even total loss of pain when opioids are stopped. Then there is the problem of addiction. In 19 years of hospital work, the most addicted patient I ever saw was a PHN patient. So use them at your own risk. 

    • jeaneen09890 jeaneen09890 charlie58834

      Thanks for your input Charlie. While I am not worried so much about addiction at this point, I am worried about tolerance and side effects of opioids. I have never taken as much as prescribed but I have been having symptoms that my body “withdraws”, when I take less. I was just looking again at Margaret Caudill’s book on pain mgt and Dr. Peter Abaci’s book Conquer Your Chronic Pain.  I do respond to the Percocet so it is hard to consider not taking it at all. But I have been giving serious thought to trying. Thanks. Helps to have the input from someone who has your background. Jeaneen 

    • babs99203 babs99203 jeaneen09890

      I'm not a fan of opiods at all. My sister has to occasionally use them (numerous back surgeries, on disability etc.) and I can always tell she's on them, but she think's she's fine. Same as when hubby had them two months ago post-surgery. Yes for short-term use, but that you have to be very careful about the constipation that can occur. It's not just annoying, it can have serious and miserable side effects. That said, when I had some really bad days, I did wonder about using a small amount for a short-time, but both my doctor (who's done a good job managing this) and my pharmacist were very opposed. I use my Gab, Aspercreme, Extra-strength Tylenol and my prescription NSAID. I've never heard it suggested, but what about adding and NSAID? There is research that shows that gab and and NSAID have a more enhanced effect when taken together. In the evening (I only take my NSAID Nabumetone twice a day) when it's time for my second dose, I swear it does more for me than the gab.

    • jeaneen09890 jeaneen09890 babs99203

      I am uncertain how to proceed. Most of the reading/research I have done over time had usually mentioned that PHN pain can be severe enough to require opioids. I was pretty blessed for 64 years with relatively good health. The pain of this PHN was/is so frightening and disabling. My NP recently suggested upping my Lyrica  and I tried it briefly. I could barely get off the couch. I appreciate your input and Charlie’s. I would have to taper the Percocet because I have been taking it pretty routinely. Last night I said to my husband “maybe I am just a wimp...”. The other thing I struggle with is pronounced allodynia. I in very limited in what clothing I can wear. And even a loose waistband can really set my pain in motion. Thanks for your feedback. Will ask my NP about the possibility of an NSAID in the future.

  • babs99203 babs99203 jeaneen09890

    You are NOT a wimp, but, is it possible as you said you've been using Percocet "routinely" that it's lost it's effectiveness. Jeaneen, that would be bad news on many fronts, and I think you understand what I'm saying. Charlie would understand the pharmacology of this more than I, but this does seem to be like a lot of meds to hae little relief.

  • sheila48912 sheila48912 jeaneen09890

     I sympathize with you. I have used every patch, cream, opiate and device on the market. I even had a morphine pump actually surgically implanted in my body for 9 months which gave me  tremendous relief but caused me great distress as well: sleepwalking and not being able to function at all.  Are use time release opiates and breakthrough pain opiates to include gabapentin. Have tried all of the antidepressant as well. Some days are not so bad, mornings are the best time, other days I am immobile and in agony. Not only do I have PHN over 90% of my torso I have severe neck, hip and back problems.  There have been times when I am feeling better and become brave and am determined to titrate down on the opiates which only throw me in into a state of extreme pain which I cannot control as once it starts it’s difficult to stop. I spend the majority of my time in a hospital like bed watching television or reading. I’m in my ninth year of this suffering but refused to give up .🤷🏼‍♀️  Keep the faith and continue to try different protocols until you can be somewhat  comfortable. 

    • jeaneen09890 jeaneen09890 sheila48912

      Thank you Sheila. So glad to have found this site. The “opiod crisis” has swung the pendulum away from stronger pain control options. But Idon’t think I could have survived the past 18 months without knowing when the pain reaches the point that it  has me in tears and barely able to function, that I have something stronger to take. My sister just asked me yesterday about whether I would be a candidate for some sort of implantable method of pain control. I currently only take quicker acting hydrocodone. It does work. Sometimes I wonder if the 400 milligrams of Lyrica are doing much.

      I am going through a period of not sleeping well and that makes coping with the PHN even more difficult. When my pain takes off it usually starts in my right side and then encircles my trunk. I am right handed so even brushing my teeth can be a challenge. Lack of sleep and the cold has turned me into a couch potato. I read and watch TV.  I scour the internet frequently looking for any new ways to treat this chronic disorder. Thanks so much for responding. This on line forum has truly eased my sense of isolation. You and all the others on this site are in my thoughts and prayers. Jeaneen

    • sheila48912 sheila48912 jeaneen09890

      Jeaneen, before you commit to an implantable please research carefully. I had a Morphine pump for 9 months, and able to control type of med, combine meds and alter strength/dose. However, even though I had tremendous relief I was a “zombie” and it rendered me stupid and forgetful. In addition I began sleepwalker and would get lost in my room or wake to find myself in a strange position, area or doing some sort activity. Had to have it removed because it was wearing through my skin. Now on hydrocodone for break through pain in addition and one time release Morphine a day. I do use creams and ice as well and have to rest several times a day. My doctor did talk to me about a spinal cord stimulator that is supposed to help with pain but he couldn’t guarantee it and I do not want any more procedures, I’m already scarred from multiple unrelated surgeries.  I did try acupuncture and it did help my back and neck but it did nothing for the nerve pain. Thought about a stem cell procedure is well still considering it as soon as they have perfected the harvesting process. This forum  is an excellent way for us to exchange information and recommend other protocols that may have been overlooked. I wish everyone well, keep the faith 🙏🏼

    • jeaneen09890 jeaneen09890 sheila48912

      Hi Sheila. Thanks for your input and concern. My PCP has never recommended anything implantable. I have been to a pain clinic once and they just wanted to add a drug Baclofen which I tried for one month with no benefit. My sister asked the question because she doesn’t understand the chronic nature of PHN. I too take opioids for breakthrough pain and I have been trying to take less and to space out the times I take it.

      My heart goes out to you and to all who suffer from this little understood condition. Hope you are having a decent day. Jeaneen🙏🏻

    • charlie58834 charlie58834 jeaneen09890


      I'm curious about whether the "pain clinic" you went to provided training in cognitive behavior therapy [CBT].  Pain clinics run the gamut from great to poor, to worse than poor ones that simply get people on more addictive and/or sedating meds. 

      A quality pain clinic would have training in CBT as a core component.  It is the standard of care for chronic pain.  A counselor or psychologist would be available to assist you with depression, anxiety, and other issues related to chronic pain. 


    • jeaneen09890 jeaneen09890 charlie58834

      No Charlie. Nothing like CBT was discussed or offered. I have seen a psychologist here and there was some CBT emphasized. Unfortunately we live in a small community and there are not much in mental health services. I am familiar with CBT and do try to embrace the principles. Thanks for your concern.

    • charlie58834 charlie58834 jeaneen09890

      Sorry you had such a limited experience in the pain program.  They really can be very effective at helping people manage pain better.  So, anyone reading this, PLEASE check first before attending such a program.  A good pain program will offer psychological services as part of the program, and will not be guiding you toward more opiates or other addictive medications. 

      Interesting, your experience with their recommending Baclofen for PHN.  It is a muscle relaxer, often used for spinal cord injury or in other conditions that involve involuntary muscle spasms or tension.  I have never heard of it being used for neurological conditions, as it affects muscles, not nerves.  PHN is purely a nerve condition, involving only sensory nerves, not motor nerves. 

    • jeaneen09890 jeaneen09890 charlie58834

      The closest true Pain Clinic is probably 3 hours away from us at the University of Michigan. I am seeing a neurologist there next month. Ironically when we decided to retire to our lake home I was quite healthy. My former PCP referred to me as a “low consumer” of health care.

    • babs99203 babs99203 jeaneen09890

      For those not familiar with CBT, there's a thread called PHN and Depression and Charlie's given excellent advice regarding the program. I've tried very hard to follow the principals and it has truly helped me. Jeaneen, I'm glad you're not considering anything implantable. Sheila's experience, unfortunately isn't uncommon. I heard a terrible discussion today on NPR about the FDA and Medical Devices. There's a new book about the problems with the protocols and approval for them. Many of them are still not truly researched years after they had "limited" approval.

      Jeaneen, on a bright note, literally. Did you get to see the Michigan Fireball last night? That sounded pretty exciting.

    • charlie58834 charlie58834 jeaneen09890

      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 there. 

      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. 


    • sheila48912 sheila48912 charlie58834

       Charlie, I certainly agree with you on pain management clinics. In fact, I am changing to another doctor as we speak because my current doctor just throws drugs at me without even checking to see if I have any conditions that would pose a problem for a particular drug he is recommending.  I no longer trust him. Fortunately,  I am the type of patient that refuses to take any drug until I research it and compare it to my blood tests. In one of the posts Baclofen was mentioned, my doctor also prescribed that for me, does nothing. But I will say that Diazepam helped  me with pain and sleeping,  but due to the nature of its addiction and possibly shutting down my respiration I took myself off.  My pain starts to ramp up in the early afternoon, I’m pretty good in the mornings. Living in Southeast Florida poses a problem because of the storms and high humidity. Considering moving to Arizona, also the dry climate there helps with my severe arthritis

      I have tried to cut way back on the opiates but once the pain starts I cannot control it and I have tried everything. I truly believe in mind over matter and patient heal thyself but with all of the physical maladies it proved unsuccessful.  Although, I do try to engage in some forms of meditation, light yoga and stretching. Too much activity increases pain so I’m very careful. I do walk everyday, at least two blocks.  Dr recently prescribed Lexapro, I have tried many antidepressants in the past only to find the side effects unbearable. I have not started the Lexapro yet.  In researching I discovered a warning that a person with low-sodium or a bleeding disorder should not use.  I suffer from both.  Wouldn’t you think my doctor would know not to prescribe that. I implore all of you research any drug thoroughly to be sure that it will not jeopardize your health any further.  Has anyone tried Stem Cell therapy yet? Evidently, there has been some success with using one’s own stem cells but the FDA has not approved it in this country yet. They are doing it at the clinic in the Bahamas and in Europe. Many thanks to all for your input, it is very helpful to have others out there share their experiences and treatments. I no longer feel so alone. Family and friends do not understand the nature of this  insidious conditionsad  so I tend to keep to myself. 🤷🏼‍♀️

    • babs99203 babs99203 sheila48912

      Wow. You're a strong woman, but this would be hard for anyone. One thing that caught my attention was your comment about a bleeding disorder and low-sodium. My daughter has Von Willebrand's disease. It's a clotting disorder akin to hemophilia, but not nearly as severe. Twice, she's also had hyponatremia, which is low blood sodium. (When people ask if you can drown from drinking too much water, a silly way to put it, yes. You can dilute your electrolytes etc. to the degree it can be life threatening.)  May I ask if you have VWD or something akin?

      Thank heavens you do your homework.

    • sheila48912 sheila48912 babs99203

      Babs, no I do not have VWD.  None of my doctors have concluded the reasons but I think the  medications could very well be the problem. Also I love water. I take a baby aspirin required bedtime because I have prosthetic heart valves which may be part of the bleeding problem and  have battled anemia since my teen years My troubles medically speaking actually started when I was very young with the onset of menses  and was finally diagnosed with StageIV Endometriosis when I was 29 years old. Radical surgery and then hormone replacement. Nothing has been the same for me since that time. Also, many of my medical problems are genetic and as you can well imagine the shingles and the ultimate consequences of them have further compromised my efforts to good health.

      Quality-of-life is nearly nonexistent and as I age it becomes more difficult to cope but cope I do! We don’t know what the future holds for us sufferers but with advances in medicine we could very well have relief soon. No one wants to live like this but we must stay strong, our families need us!

    • charlie58834 charlie58834 sheila48912

      Hi Sheila, 

      A suggestion, to apply CBT to your current thinking and situation (only if you want to!):  Consider how thinking that you have “nearly nonexistent quality of life” might be affecting your emotional state. I fully understand that you, and all of us here, have significant pain and health issues. But thinking in this fashion might be decreasing your quality of life in itself. Thoughts do create emotions, which explains how we feel worse when we focus on or magnify the negative aspects of our lives. 

       I Used to have this same thought. So I would ask, “is this thought 100% true?”  The statement as it’s run through your head would mean that almost nothing is a positive experience for you. That’s just rarely true. Even when my PHN was at its worst I could honestly say my marriage was good, I still enjoyed food, I still could laugh at good jokes, and so on. If the thought is not 100% true, it’s an unhealthy thought. 

      Then ask, “Does this thought make me feel better or worse?”  I’m pretty sure it makes you feel even worse than you felt before you thought it.  If the answer is “worse,” the thought is unhealthy and leads to a lower emotional state. 

      So, if the thought failed EITHER rule, change it so it’s healthy, then ditch the old thought and replace it every time with the new one. 

      Possible examples of healthy thoughts:  “this PHN is really difficult, but I still can enjoy some things in my life...I’m not going to allow PHN to ruin my life, I will focus on what’s good and improve my quality of life...The pain is hard to handle, so I’m going to do something positive every day and then focus on what part of it I liked.”  

      My examples might not fit for you, so you might want to come up with your own replacement thoughts. Then test the new thought to make sure it passes the tests for healthy thoughts. Because why would you want to run thoughts through your own head that are either untrue or make you feel bad?  That would be self-defeating, right?  But, believe me, we all do it at times, and we usually don’t know that we are harming ourselves. 

      I hope I’m not coming across as lecturing. I don’t mean to, I’m just trying to help you to get you to where your life is better for you. 

    • babs99203 babs99203 charlie58834

      When I first found this topic, I thought it wasn't for me. I'm a bit cynical and very analytical, so I thought this is a bit too New Age Pollyann-aish for me. Then I thought, this guy may have SOME ideas I can use because what I'm doing now sure is not helping me truly deal with my PHN. Yeah, I'm on Gab, Aspercreme, prescription NSAID, etc.  but when you have to quit a job, feel old, useless and lose 80% of what makes you YOU due to this, I wasn't doing anything to handle the emotions and depression that came with this whole me.

      So, I thought, maybe I should use his "screening tool" for some of my thoughts. Sonuvagun, he was right and it DID help! I'm not little Mary Sunshine, but I realized that thinking the absolute worse didn't help me or anyone who cared about me. So, when I get really down or am having a bad day I use this. It's easy, it's free, it's logical (BIG plus for me), it doesn't hurt me and I can do it anytime.

    • sheila48912 sheila48912 charlie58834

       Charlie, I could not agree with you more. I have helped many of my friends use visualization and a positive mindset to overcome insurmountable odds. For myself, if I only had PHN to overcome it would be simply a matter of moving the focus elsewhere and going on with my life. However,  that is not the case I am battling multiple extremely painful conditions that are inoperable and exacerbated by weather and stress.  I utilize deep breathing exercises and stretching to alleviate some of this pain in addition to all the other protocols discussed in this forum. I am well aware of how the mind can damage the body and I do try to remain positive and focus only on the things that bring me joy. My self isolation has proved to be most toxic. I am alone and have no one to turn to except the help I hire which I couldn’t manage without.  I have much to be thankful for and know that it’s up to me to change my life. There are so many others out there in much worse shape so I remain positive that I can go on.  


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