Depression with PHN?

Hey Ron,

Thanks for your reply, and the nice things you say!  I remember what it was like for me when I was about 2 years into living with PHN.  Not easy!  As I said before in this forum, I had some real problems with severe depression.  As others have pointed out often, it's even more difficult when people don't get it that your pain is continuing and is severe, because there are no outward signs.  From their point of view it seems like we're exaggerating our pain or maybe wanting attention.  From our point of view they seem unsupportive or maybe uncaring.  So having this forum provides some level of support from those who, as you say, have earned the T-shirt! 

I found it very helpful to have a therapist to talk to about my PHN back around that time.  Despite what people sometimes say about therapy, most people get better and feel better after just a few sessions, and that is backed up by rigorous research on outcomes. 

Depression magnifies pain, which then magnifies depression, and the snowball continues to roll.  So, it's important to defeat depression using all means necessary.  At best, depression makes life unpleasant, and at worst it can kill us.  It's a really bad roommate to have.

Personally and professionally, I recommend finding a therapist who specializes in CBT.  You can screen therapists using the web.  Just do a search on "CBT therapists."  You'll find sites that allow you to plug in your zip or city.  Then you get to read nearby therapists' descriptions of their approach to helping people, as well as their photo and a list of the age groups and problems they prefer to work with.  It's not that CBT is the only way to go.  There are many therapists of other orientations who would be helpful.  But the research in rehab psychology has supported CBT as the most effective orientation for medical issues at this time.

It's clear you're really having trouble with PHN, and that's actually pretty normal at this phase of the disorder.  I don't want to see anyone go through more than they have to with this difficult problem, so I hope you'll follow my advice.  Please continue to let me know how things are going. 

P.S.:  Please remember always that PHN lessens with time.  It's easy not to believe that, as it happens so slowly, over years' time.  But, it does.  The important thing now is to find ways to manage it so its effect is lessened, in the present. 

And, to everyone with PHN [and those who have not had it]:  Please get immunized against the zoster virus [the chickenpox virus, herpes zoster].  While it is not common, you can get it again!  The immunization decreases that chance.  I hear there is a new immunization that is more effective than the older one, and this might be worth checking out.  But either one helps. 

Are you recommending that we got the shot while still suffering from a PHN?  I had the shot prior to getting the shingles and now have PHN going on 8 months.

I would talk to your doctor about that if I were you.  There is a new vaccination that is deemed more effective than the standard one.  Whether your doc recommends it, and whether it will be covered by insurance are issues to check out. 

This post caught my attention because I have found the one thought that helps me the most and gives me the most relief from anxiety and negative thoughts is the idea that I will get better or, in other words, the nerve pain will lessen with time. All my friends who have had shingles and the nerve pain tell me that eventually the nerve pain went away or lessened to a degree that I were able to live a normal life. I have also been told by all my doctors that my pain would go away but it would take awhile. On all the medical websites it states that for most people PHN pain does disapate.

If I remind myself that the pain will go or at least lessen sometime, I feel much better and am able to pull myself out of the despair I sometimes fall into when I am alone. I live alone which is not helpful. But, I did find a 

psychologist who practices cognitive behavior therapy so I think that will help me, as well.

Do you know if there are any support groups for PHN where people meet

in person not just online groups?

You have had PHN much longer than I have .  The initial bout was just 6 months  ago.  For three months after the rash I had horrible deep pains.  I must say those are gone.  I am left with the awful burning, itching pain.   I covers a large area of my right side, underarm (the worst) and back.  Impossible to wear a bra.  Pain meds do nothing.  Deep breathing and meditation (what I call focusing on pleasant things, sort of) , any distraction helps. Trying not to dwell on the fact that this may go on indefinitely help also.  Strangely, rubbing a cool wet wash cloth over the bad spots , air drying and applying 4% lidocaine creamy (available over the counter) gives some relief.  The skin over the previous rash area is sort of irritated and pimply.  Does anyone else notice this?  Does it go away with time??  I too, would like more ideas that help others

I have found using a non itch cream helps. I have to avoid being in hot weather. I took meds but that didn't help. I also find a cold face rag helps. My shingles were located from my spin to my navel on left side. The PHN is not that widespread. The area that causes me pain, itching is below my rib to the navel area. My skin in that area feels a bit rough and raised. Every time I wash my hair the area becomes irritated. At night I take to a wooden back scratcher to get relief. After 8 years, I have given up on the PHN going away. I must say I have just grown to live with it.

Hi Caseysue,

Not sure what you're doing now to manage the pain.  Ruth's suggestion of lidocaine cream or gel is a good one.  What works better for me is Aspercreme, which has 10% salicylate in it.  Other creams are available with salicylate [it's really aspirin, but the anti-inflammatory is applied topically].  Nothing will rid you of the pain.  But, there are things that will help with pain management. 

Ruth I dont know where you live some pain doctors who a lidociane patch which I hear helps some.

I have phn almost 3 years had the spinal cord stimulator implanted 3 months ago took some pain away.

Now binging weened off of fentanyl patch down to 12mg from 75

Dr increased Lyrica to 300mg 2x a day not much difference.

Last week had night pain starts around 10-10:30  ends around 4:30

cant sleep till it goes away my doctor''s statement call the reps

from the company, he wont give me any more meds.  That's ok Im going to a new dr in January hopefully will treat me like a human not

a pay check.

Also on Tramadol 50 mg

You have to be pro-active and do research so when these drs tell you

something you already know the answers.

It's a shame these drs dont care about their patients.

Happy Holidays and a pain free 2017

I tried Lyrica and got off and went on Gabape tin. Eventually I weaned myself off that as well. They only worked up to a point. I apply an ointment to the area that burns and is itchy. It cools the area and then I am ok. I have had PHN since summer of 2008. I hope someone will come up with a cream that would heal the area. I have a patch from my navel to right past my rib cage. This huts more than one could imagine. Since the blisters healed, no one can see why this hurts so bad.

I have tried the lidocaine patch and found it messy and it falls off.  It does help but not for the 12 hours they say.  I found the cream to be better for me.  Even with my insurance, the patch is pretty expensive.  I agree with you about the doctors.  The ones I have seen do not understand this chronic condition.  This forum is so informative with people that are going through it. One other thing that helps me is acetaminophen pm at nite.  This has benedryl and it seems to calm the burn and itch.  Also the lidocaine cream. As I have said before when the burn gets too bad, a cool wash cloth rub over the area helps followed by the cream.  I find the pain and itch gets worse as the day goes on.  I am pretty good in the morning but by nite I want all clothes off.  My social life is nil as I can't wear appropriate clothing , only baggy sweatshirt stuff.  As I have commented before, this is life changing.  However, I manage not to get depressed.  I have good friends and a great family of support.  Maybe 2017 will be better!!  Happy Holidays to you!

Ruth

Thanks I will try those, last night I didnt go to bed till almost 6am

the pain was bothering me.

Yes you can't wear nice clothes I missed many parties and special

events cause I cant wear anything with a collar.  Even winter

coats hurt.

As soon as I get home I take off my shirts.

Hope they find something soon so we can all  get relief

Happy Holidays 

Paul

Hi Caseysue, Paul, and Ruth,

I've had PHN for 26 years.  Like you, I have found that creams like the Aspercreme work best to decrease pain and itching, and they have fewer side effects than oral meds.

It is difficult for others to understand how painful the condition is, because as you say, it is not visible.  So, it does help to talk to others with PHN. 

Docs:  Don't go too hard on them.  I've worked in the medical field for many years, dealing with chronic pain and other medical conditions.  With chronic pain, they face a tough battle.  Conditions like PHN are hard to manage, and we really don't have meds that are great.  The meds do just part of the job.  Docs are not trained in over-the-counter meds like Aspercreme and lidocaine gel, so they are not aware.  Most of them see extremely few PHN patients, and usually in the early phase, so they don't learn what works beyond the oral meds.  When people want narcotics the doc is faced with a difficult issue:  They are addictive, and usually work well only for a few weeks.  Then the patient wants more, and this easily leads to addiction.  I've worked with docs who say no to long-term use of narcotics, and docs who keep allowing increases in dosage.  The ones who rely on narcotics for long term pain end up with a trail of some dead patients, and a lot of folks who then have another problem to add to chronic pain--addiction. 

In my opinion, WE have to take control of our pain management, and use the docs just for part of the solution.

Also, someoned earlier in this thread mentioned meditation and yoga.  Meditation, especially Mindulness Meditation, has been shown to be helpful with conditions like PHN.  I think it helps greatly.  It requires effort on our part, but if we wait around for someone else to do things for us, we'll be waiting forever.  Myself:  I plan to up my meditation practice to see if it helps me.  Anyone else interested in doing this?

Hi Charlie   Happy Holidays to you nd your loved ones

I'm hard on this doctor because he refuses to get on the

phone and shuffles me off to reps. When I needed immediate

pain relief for night he gave me nothing.  I had night

pain for a few days and couldnt sleep at all.

Ruth suggested lidocraine   I just purchased Aspercreme

with lidocaine and in 5 mins i'm pain free.  I know

this isnt a cure all but it helps.

Thanks Ruth

Have a great holiday season

Paul

Paul,

Oh, great to hear the Aspercreme helps you!!!!!  It does help me, and it has helped lots of my PHN patients when I was working in a hospital.  I encountered only about 1 PHN person per year, over about 20 years, and all but one of them reported it helped a lot. 

So, I use Aspercreme mostly at night, to sleep better.  I buy the "knock-off" brands such as Walgreens or Target when I can.  They are just as effective and cost less. 

Sounds like switching docs is a good idea for you.

I like hearing about things that work, even if they work partially.  This helps all of us to target what we do, and to get more control of the condition ourselves.  Thanks, Paul!

Ruth,

I am practicing a lot of techniques to help me deal with my PHN. Like you I am using meditation and deep breathing. I am also doing visualization exercises. I listen to different soothing sounds like the ocean or raindrops. Your shingles outbreak seems just like mine only mine was under my left arm and left upper back plus under my armpit and over my left breast. Just like you, I am left with a burning, itching pain as well as a stinging pain under my left arm. Also, like you the skin over my previous rash area is still very sensitive, irritated and red. I can barely touch the skin on my left back even after almost three months. You mention drugs don't work for you. In my case, I cannot take drugs because I have too allergies to medications and I get too many side effects. So, I have to find other ways to live with my pain.

I use a good anti-itch cream Cera Ve and mix a little of it with Jason aloe vera gel. I also use low dose lidocaine patches sometimes. I try to eat a balanced diet and rest a lot. I had to take a leave of absence from my job. I try to sleep a lot more too. I also try to keep most stress out of my life--stress is the worst thing for increasing shingles and PHN. The main thing I try to do is focus on the thought that I will get well and the pain will lessen over time. Everyone I know who had shingles told me they went through horrible pain, some for many months. But, all of them are doing well now with little to no pain.

So, I try to keep in my mind that I will get better. But, I know that it is difficult because being in constant pain is tiring and makes a person feel weak. I live alone so it is a constant struggle for me to remind myself that my life will get better if I try to stay positive and I fight negative thoughts.  

Hi Tiffany,  your pain sounds exactly like mine except mine is on the right side.  The armpit area is the worst.  I live alone also which is a good thing since I am topless while at home.  I seem to be managing it by doing exactly as you are and still hoping it will get better or go away.  Yes, I find it very tiring.  I can't hardly believe that 3,years ago I was climbing mountains and physically active.  Now I get tired just walking for exercise.  I find I can get distracted from the pain by going to a few social activities for short periods.  Yesterday a friend took me to the movies.  Most of the theaters here now have recliners and I was squirmy but managed to enjoy the outing and distraction.  So, there is life with PHN.  Not comfortable but better than the alternative!!

 

Hi Ruth,

We seem to have a lot in common--especially that we live alone and are trying to deal with PHN pain without relying on drugs. Also, I noted that you mentioned you were really active before shingles. I was too! Only three months ago, I was full of energy, running around, involved in living a very active life as well as being college professor. Suddenly, after getting shingles November 4, 2026,  within only about twelve weeks, I have lost all my energy and I can only go out for two or three hours then I have to come home and rest. I can't run or jog or even walk my dogs like I once did. It so hard for me to get use to my non-active lifestyle. Doctors don't tell us shingles/PHN sufferers much about what to expect with this illness. I don't know what are normal symptoms for shingles and PHN. That is why forums like this one are so important. 

Shingles and PHN take a lot out of a person. I believe that this illness does knock a person out for quite awhile. I appreciate you sharing your 

experiences, Ruth, since I am more reassured that the lack of energy I am feeling and the other pain I am having are not abnormal. Also, I feel less alone in my anxiety and worry. Just to let you know, everything I have read on medical websites states that PHN does go away in most people.

Also, all my doctors have told me that my PHN will eventually diminish or disappear--it will just take time. 

I sure hope your pain't does go away. I got shingles in August 2008. Sorry to say the PHN remains. It has definitely gotten less, but I would say after the first 4 yrs it hasn't gotten any better. However, with the use of creams and staying out of the heat nor anything tight around my waist. I had them from my navel to my spine. But only have spots where I have the pain and itching. I hate when I have to wash my hair, as the warm water makes it itch. But I put my lidocaine cream on it and that makes it tolerable. I just retired, and was able to handle the PHN and work.

Yes, thank goodness for this forum.  Seems like PHN is not well studied and most people just don't understand how debilitating it is.  My daughter is in the medical field and has looked and done hours of research trying to learn more about this and has even searched for clinical trials that may be going on.  There is nothing out there.  She was shocked to find how life changing this is.  Guess we are in somewhat of a minority.  I was interested to read your comment about having dogs.  I have always had at least 2 dogs.  Now I am retired and live in an apartment and chose not to have one, but some of my neighbors do have dogs.  Before shingles, I was the designated dog walker when friends didn't want to or in inclement weather.  Now I no longer have the energy.  Really miss dogs!

I meant 2017! Sorry about the typo. 

Just like the symptoms of PHN are different for everyone, the duration of the pain and the intensity is probably different for everyone. Some people, like my friends said their PHN pain did go away after some time. I think that most pain comes and goes in varying degees and is worse when we are stressed or anxious or when we do too much. This forum is a good place to learn how we can increase our chances of lesseing our pain or even getting rid of it by working on improving our lifestyles and having a more positive attitude.  

I agree that PHN is not well studied but neither is shingles. I was surprised at the lack of information I received from doctors about my shingles and PHN. All they could do is write prescriptions for strong drugs which I cannot take. I wanted to know if my symptoms were normal and doctors couldn't even tell me. 

Yes. Dogs are wonderful. Pets are supportive and comforting when their owners are ill. I'm sorry you no longer have the energy to walk your neighbors dogs. I don't have the energy now to walk my dogs as I once did before I got shingles. I have had to hire a dog walker. But sometimes, even though I am in pain, I force myself to take my dogs for a walk because it makes me feel a bit more normal and I know my dogs enjoy me with them. 

Hey Tiffany, Welcome to our group!

You say doctors have given you little info on shingles and PHN, so I'll volunteer some info here from my years working in the medical field.  Shingles is caused by the herpes zoster virus, also known as the chickenpox virus.  After having chickenpox and getting over it, the virus does not completely disappear.  Some of it hides out at the base of the sensory nerves, along the spinal cord.  Our immune systems keep it from getting out of control.  But, under periods of stress or anything else that decreases the immune system's functioning, the virus can again multiply.  This time, instead of affecting only the skin as a case of chickenpox does, the virus attacks the sensory nerves themselves, but usually only one sensory nerve.  This causes the shingles outbreak on the skin, in a defined area called a "dermatome," the area of skin served by that particular nerve.  In some cases the shingles clears up with no residual effects, but often the nerve is so damaged that its functioning is changed.  The change in functioning is what docs call a "paresthesia," or altered sensation.  It can be experienced as shooting momentary pain, itching, burning, numbness, or other sensations, but the cause is the damaged nerve, not the virus.  The virus has again been driven back into limited existence. 

So there are two stages to the process:  The original shingles episode that is over in a week or a few weeks, and the postherpetic neuralgia [PHN] stage, which lasts much longer.  Most docs have limited experience with PHN.  In my case, my original family doc never told me I had PHN, and I think he may not have known of its existence.  I discovered it when reading a medical study a year or so after my PHN began! 

Treatment for PHN is limited, and results are limited.  It's not a disorder that we have great treatments for, and there is no cure.  Treatments include GABA [gama-amino buteric acid], other anti-seizure medications like Tegretol and Lyrica, narcotics, older antidepressants like amitriptylene, nerve block injections, spinal cord stimulator implants, topical creams and gels, and a host of more naturopathic remedies such as vitamins and amino acid supplements. 

In my experience and from this website, the most effective treatments for most people have been the topical creams that contain either lidocaine [lidocaine gels] or salicylate [Aspercreme and others], and GABA in some form as an oral medication [Neurontin is one that is not too expensive].  But, you will find some people who say they get good results from the other methods. 

Most docs will tell patients that PHN goes away in a few years, but while that sometimes happens, it's not entirely true.  I've had PHN for 26 years.  Its severity has decreased a good deal, but it's still something I have to manage. 

Depression:  Very common with PHN.  One of its most common symptoms is fatigue or low energy.  So, your low energy may be due to some medical issue, but it could also be due to depression.  Depression is a very treatable disorder.  The most effective treatments are cognitive behavior therapy [CBT], exercise, and antidepressants.  Other types of psychotherapy are also effective, but CBT has the most research supporting it, by far. 

For me, exercise has been extremely helpful in improving my energy level.  At first, of course, it makes you more fatigued.  But if you continue at least 3x/week, you will develop more energy. 

Glad you have joined us.  There are some really great people here who care a lot and want to share what's worked for them!

Shingles was diagnosed 8 weeks ago when I was on a cruise ship.  It started with pain on my upper inside right arm with a rash developing in the arm pit.   Went to see the ship's doc who promptly put me on the antiviral drugs.    The rash spread aross the top of my breast and around to my back.   Never had the pustules.  There is no doubt in my mind that stress is what provoked this disease into action.  I feel for everyone who is coping long term and given how I feel will probably be joining this club. Like you, Caseysue, wearing a bra is extremely uncomfortable. The pain in the arm pit drives me nuts.   How can an area feel numb and pain at the same time?  I have also developed pain that goes right down my arm bothering my elbow and across the top of my hand.  Unfortunately, my dominant side is the right so it is really interfering with things I love to do.   Back to the armpit which always feels sticky (only way to describe it) because of skin rubbing against skin.  Dr. has prescribed 300 mg of Lyrica a day.   Anyone else on this drug?  The feeling of electrical discharges has reduced although still there but mostly just a lot of constant pain.  I am trying to come to terms with the distinct possibility of living with this the rest of my life (heading towards my 70th birthday) and trying to figure out how to deal with the everyday stress in my life.  I have sat with an ice pack under my arm and across the breast for relief.  Cold washcloth also helps. On advice of my cousin's daughter who is a naturopathic dr tried applying St. John's Wort Oil with no effect.   I will try Aspercreme. Am supposed to get my usual bi-yearly mammogram which is always painful so don't feel I can subject an already tender area to this procedure. Caseysue, do you use deodorant?   I went without for quite a while but trying to use it again. Wonder if it would be prudent to buy one without aluminum in it.  I appreciate all the support offered from charlie and everyone else who is coping the best way they can.  Thank you for allowing me to express my thoughts.

Hi Sandy,Sorry to hear you are also affected with this very nasty disease.  I was diagnosed a year ago.  Believe me, things do get better but it takes a long time.  I have PHN in about the same areas you do.  Yes, I still have pain but it seems to have become more localized around my right shoulder blade.  The armpit was the worst.  Better now but I still sleep only on one side with a tiny pillow that I made tucked in the armpit as I can't stand skin on skin there!  I can now wear a bra with very wide straps for part of the time when I must dress up some.  I find that exercise is good although it does seem to aggravate the skin sensitivity.  Cold wash cloths help.  I use a lidocaine cream at nite.  I tried the Lyrica and it didn't seem to help and I missed my glass of wine in the evening so quit that.  I now take 300mg of gabapenten twice a day.  I was doing 3times  day but found it was affecting my memory.  I think the 2 times does help.  This nerve pain is so weird.  Sometimes I can feel nerves even on my scalp.  As far as getting mammogram, I know I could not tolerate that so I so self exams regularly and hope that is enough.  Good luck with this and hang in there as it does become manageable or else maybe you sort of get used to it.  Mind distraction is a fabulous way to cope.  I can forget it if doing something I really love!

Hi Sandy,

Welcome to our group.  Sounds like you've read about Aspercreme helping, probably earlier in this thread.  It's important to keep in mind that PHN does decrease in severity with time.  Slowly, but it does. 

I have recently discovered another topical med that helps, I think better than Aspercreme:  Triamcinolone Acetonide cream.  It is prescription in the US.  My dermatologist prescribed it years ago for eczema.  It takes an extremely small amount to work, rubbed in gently.  Another person on this site was getting some type of cutaneous [skin] injections with this drug, experimentally, and she said it helped lots, so I decided to try it topically.  You'll have to ask your doc how often you can use it.  For me, it works even when Aspercreme fails during a particularly strong flare-up. 

If friction is part of the problem, I have an idea for the armpit:  Chamois Butt'r.  It is used by cyclists who tend to get saddle sores.  I have not used it but a friend swears by it, says it is the best product to prevent friction.  Worth a try maybe.  I have not tried it for PHN because mine is not in an area where friction is an issue [facial]. 

Since I have tried so many creamd, etc...I have ordered somr Chamois Butt'r. There are days when I only have minor irritation. But I put Aspercreme with 4% Lidocaine evert night. Since I have been dealing with this for 9 yrs. I look forward to trying new ideas. I am so hoping it will help.

Welcome Sandy. It sounds like your shingles outbreak is similar to mine and some other women on this forum. My ordeal began in November 2016 and I was left with PHN. The good news is that it does get better, VERY SLOWLY as Charlie always reminds us. I am gradually coming to terms with the fact I may have this pain forever. But, because it seems to be slowly decreasing, I am learning to live with it. I am even planning to go back to my job in a couple of months. Many things can aggrevate the pain and others things seem to lessen it. Trying to eliminate stress is one of the most important steps you can take by using relaxation techniques. Also, stay active and focus not on your pain but on something that brings you happiness. Good luck!