Yes I know the workbook. I can see how you might see it that way. It’s written for all levels of competence/reading ability. It’s not bad, but I wasn’t super impressed by it.
Glad to hear it wasn’t just my impression
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 condition so I tend to keep to myself. 🤷🏼♀️
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.
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!
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.
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.
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.
Hello. I came down with shingles May 2016 when I was 48. I am a nurse anesthetist, so I'm very familiar with pathophysiology and narcotics. I won't waste time explaining my profession. Its akin to a nurse practitioner who does their masters degree in anesthesia. Anyhow, my pain was at a 9 at first. Used an old oxycodone bottle liberally. It didn't do much if at all. So I quickly found a pain specialist. These are anesthesiologists who finish their residency and then do a pain fellowship. This was a group of 3 docs. The first was an older gentleman....kind...he said he would start me on an older drug that historically had been good for phn pain.....methadone. It didn't do much for my pain at the dose he prescribed. My next appt I saw the next partner. He stopped the methadone and put me on MScontin. At the dose the nervous doc prescribed, I had little relief. Then I saw the third partner. He had a better resume than the other two, much smarter. He stopped the oxycontin and put me on fentanyl patches. It's a powerful drug. Kills a lot of people who misuse it. We use a ton of it in surgery. It wasn't helping me. I called him and he upped the dose. My second call he bumped it up again. Now I was on doses that terminal cancer patients use. Still no relief. So we went back to methadone and increased the dose a bit. Finally some relief! Some.... Then we tried another route....an intercostal nerve block. Injecting a local anesthetic mixed with a steroid. I was heavily sedated. No success. During this May through September I was also taking lyrica. I traveled to Cleveland Clinic. The M.D. I saw said he thought I would have the phn for at least 2 yrs. He wanted to try a treatment called Qtenza. Read about it at their website. The doc said it had a 50/50 chance of working in his experience. It was very painful but it was because they didn't give me pain or sedation meds. Needless to say it didn't work. Now the pain guys at home were getting frustrated and nervous with the amount of narcs I required. We all worked for the same anesthesia corporation and this may have played it's part. I had to find a new doc. I called my anesthesiologist friend and she recommended a friend of hers. Thank God above he is wonderful. I am so blessed. Truly. He right away upped my methadone and it brought my pain down significantly. From an 8 to a 4-6. He tried an epidural on me to see if it would help. I didn't feel a thing and had no sedation or pain meds. He's got the touch, but it didn't help the pain. So during this time I was on 60 mg of methadone. 20 mg every 8 hrs. and lyrica. I went to see a neurologist to see if she had any ideas. She put me on nortriptyline. It really helped. It's also an old antidepressant. It IS indicated in the treatment of phn pain, however. We ended up increasing the dose some months later. Still on lyrica at this time. Forgot! The first group had me using 2 creams. One was 5% lidocaine. The other was ketamine/gabapentin/anti-inflammatory cream compound from a special pharmacy. This was my last resort when I was in uncontrolled AGONY. It was very helpful when it kicked in, but i had to have someone put it on. I cried bitterly and occasionally screamed from the pain when my mom put it on. Back at my pain doc we upped the lyrica to 200mg every 8 hrs. I take my nortriptyline at night. It makes one sleepy. I was given a prescription for celebrex, so I thought, what the Hell. I take it once in a while. I don't mess with Tylenol or ibuprofen. Daily, long term use is very hard on the liver/kidneys and mine was dealing with enough already. Also forgot to mention that when (at 48 hrs) I knew I had shingles, I was immediately started on an antiviral (and steroids). The antiviral is the protocol at onset. Not much of the literature support the use of steroids during onset of phn, but I did what I was told. Oral steroids are NOT something to use freely. It is some serious sh_t. and really messes some patients up. Prior to this all I was on two antidepressants and a mood stabilizer for type 2 bipolar. Still on these meds plus another antidepressant, making it 3. My pain doc jumped on the bandwagon of legalized marijuana here in Florida. He wanted me to try it. It is supposed to help heal nerves, too. I don't know if it helps my pain but we are still trying different concoctions to see what will work best for me. It comes in drops, creams or vaporizer. It helps my anxiety for sure and really helps me sleep at night. Now methadone can cause heart rhythm problems so I required an EKG every 4 months. With my last one I did have a change. We switched one of my antidepressants because it can cause similar rhythm problems. A week later my EKG was back to my baseline. But my pain doc wasn't happy. He wants me to cut the methadone down by half. Now I am working on decreasing the methadone SLOWLY and pretty easily. Decreasing methadone too quickly is Hell on earth and worse. While cutting back on my methadone we are adding a new drug to replace it. It is called Xtampza ER. It's extended release oxycodone. What's good about it is they have built it so that it is abuse deterrent. I take it every 12 hours. On it's website you can get a coupon card that covers most of the cost for the first year. So that is my narcotic journey. I have done a ton of reading on the internet to educate myself on the meds that help nerve pain, that have been studied and the consensus say it is indicated. Oh, my shingles went from breast bone, under my breast around to my spine. It felt like I was in a vice or bitten by a shark. I have lived topless at home since I got sick. I go out shopping or doc appts and shirts are torture. The shower hurts. Sweating down my back is horrible. I mostly sweat head to hip on the side of my shingle. It is bizarre. The narcs and menopause cause my sweating. I have recently heard about the use of an old anesthetic drug for phn. A powerful narcotic I've only used in surgery. Ketamine. They are successfully using it intra-nasally and intravenously. You can read up on it. It is also being used intravenously for depression that isn't responding to meds. For phn, when IV ketamine is correctly administered in the right/safe setting (hospital or out patient surgery) the weird side effects and hallucinations rarely happen. Research and find a facility in your area where the ketamine IV treatment is frequently done. Don't misuse any of the meds. They can easily kill you. I have to say, be careful to take what other patients say as the Bible. Many lack the education and understanding of the treatments and meds. Read the medical websites like Medscape or Mayo Clinic website. Educate yourself on this stuff. I'm still learning. It will empower you. You may even end up knowing more than your doctor. Good luck.🤝
Thanks for your detailed sharing of your PHN “journey” Bonnie. I am having some pretty significant pain this am so want to respond again when feeling better. I have had PHN since Dec 2015. Was misdiagnosed however for 4 months,had an atypical presentation. This website has helped ease the isolation I have felt. My husband is wonderful but has grown weary.
Wow Bonnie. That's a LOT of heavy duty drugs you're on. I find it a bit scary, so please be careful. The location of our PHN is similar, back/chest. I only use Gab and am currently on 1200 mg/day down from 2700 a year ago. I was diagnosed with shingles in October 2016. I also use Aspercreme 3 times a day and 2 extra strength tyelenol 3 times a day, plus a prescription NSAID I've been on for years. I've heard the NSAID can work to enhance the Gab. I've also worked hard to manage my activity to avoid activating the pain any more than necessary. At it's worse, I used a straw for drinking as lifting a class of milk was too painful. I'll spare you the details, but anything that caused pain due to lifting, turning or bending, I limited. Now 15 months later there is a definite improvement. I've gotten back parts of my life, but I did have to quit working. Take care and I hope you find some relief soon. Ironically, as I taper off the Gab (I have to do so VERY slowly 100 mg/month, honestly) some of the pain seems better too. Or at least the way I react to it. Eventually for many of us, it can become more of an annoyance (on a good day) than a life-changing level of pain.