PHN Survival Skills

Boy Steve, you seem awfully young to me get Shingles. I hope you don't have an auto immune problems, since it seems to me that yo ought to be able to fight them off.

Right now, I'm sitting with a top on, as I do most of the time when I'm alone. When the top goes on, the Lidocairne cream goes on as well

I sure hope you fight it off!!

I'm glad I come across as young but i didn't mean to give that impression.

I'm 65 now and first suffered at about 56ish.

You've made my day.

All I can say is to try Lidocaine patches or cream, whichever works best.

Hi  You mentioned Lidocain patches/cream  can you tell me  where you pain is?  did you use the patches?  I have used them but found I could not tolerate the 12 hours off and because my shingles pain was under my right breqast and around my back to my shoulders, after taking the patches off my skin was so hyper sensertive I could not have any clothes on the top area (thank goodness I live  on my own)  What is the cream like?

im 62 next week and live  in Cambridge  UK

Hi Jocelyne. I am now 70 and currently live in Derbyshire having moved here from Norfolk last year. The most extreme I have tried was a nerve block injection given, coincidentally in a Cambridge hospital. Sadly it didn't work. My pain is from on and under left breast, round the side and on the shoulder blade. I have tried the patches but they offered little relief, so I am still persisting with 450mg of Lyrica which does help somewhat but only by a small amount. I do hope this helps. Ian x

Hi Ian sorry for not writing to you ,  So you attendied  wonderful Addenbrooks to  lol   Yes I live near Newmarket the wonderful  Racing area. You are a mirror imaged to my area but on the right  If that makes sence.  I cant get to sleep again  its 2 20 am   and yes Im up in pain so trying to take my mind off the pain  (please excuse any bad spellings)   What is Lyrica?  I do take OXYNORM which is an "immediate release" and yes it does work,  I can take it every 4 hours  but I am really trying to take it  when I cant take or have used all my other drugs.  I also suffer from arthritas  so these meds I  have to take them tooooo.  I have to attend  the pain clinic at the cambridge hospital,  I should have gone on Saturday for 4 hours but  I refuse to drive when my pain gets bad. I have 3 more years before I can retire. but Im off on sick leave now for my second month as I am struggling to wear clothes suitable to wear in a senior school  when like you im sure tops  rub on the areas and for me a bra is impossible.   Why cant I find any  groups for people like us who have been hit with the shingles and PHN   What would we do with out this site   Thank you for allowing us to talk to people who are truely in pain .  Speak soon  I wish you well  Jocelyne Cambridge  U.K

So sorry to hear you are still suffering. Things haven't eased with me either but I am taking the route of just Lyrica which leaves me with a clear head, but increased pain. I am trying mind over matter lol. Not easy but at least I can enjoy life in the clear spells x

Hi Ian,  sorry to be may be a bit   wird  but you mention Lyrica  can I ask what is it??? when I re read this  you said "im taking the route of just Lyrica which gives you a clear head" sorry feel a bit stupid but what is it??  Jocelyne Cambridge  UK

It is not stupid at all. It is an anti epileptic drug also known as pregabalin x

ahhhhh  now I have learnt something to night...  I take 300mg x3  4 times a day..  but it seems its not working for me now. Do I now go to my doctor and same its not working but will he increase it again, yesterday I drove about 20 miles away to meet with my school union lady to discus my options a do I resign from school because  Im not coping with running back and forth to class lessons  I support certain students in a senor school. then drove back none the wiser  do I go sick again and get my doctor to give me another medical cert to send into school.  Now I hear I dont qualify for any more full time pay, from the 23 of  this month,  My body today gave up again crying with pain under my right breast area, also having reflux during the night, to the stage where I struggle for air,  I have a narrowing in my throat  food often gets stuck so I have had two ops to stretch the area but it goes back again. Just one silly thing  the surgeon injected inside my throat with Botax  during the op, three hours later on the ward  I was told to sip water the nurse pulled the curtain round me   I started to sip the water only to find my face throat and lips swell up and I was gasping for air, I was rushed back into the operating theatre  with as doctor kneeling on my bed trying to put a tube down my nose, I was fighting him off, it was in a silly way a comody film with the doctor on the bed and shouting bring the crash trolly... I dont remember  any thing after that  two days later I was sitting in the ward being told by my surgeon what a fighter I was..  Im ok now  well sort of  Friday I must go for another beriam swollow  xray in hospital because im struggling again.  hence the  problems last night.  Tell me why is it we all seem to have one issue after another  with our health.  sorry Ian  ramberling on again  well im 62  thats my excuse.

Take care  gentle hugs  Jocelyne Cambridge  UK

Hi Jocelyne. Sorry to hear of al your problems, keep at it and I am sure things will improve. My thoughts with you x

High level pain killers like Tramadol together with 10mg Amitriptyline (acts as a pain killer with nerve pain as well as an antidepressant). Vitimin B12 good for building nerve tissue. There is an ointment made from an extract of Chili pepper (capsaicin??) that some people have found helps.

Actually, just worked out I've had it for 9 years, it does improve with time or maybe I've just got used to it.

One question that you should answer, is it just PHN or do you suffer (as I did/do), recurring shingles which is an autoimmune problem and can lead to to you getting other problems (as it did with me) like Polymialgia Rhumatica.

Angie:  

I had one doctor in his 80s that actually hugged me and said "I am so so sorry but I have had patients that had some improvement after 5 years".  He was right there was some improvement where I actually have say 4 to  8 hours on some days that are "pain free" meaning still pain but not distracting to the point where you cant do anything.    I was lucky I worked for an employer with good benefits.  However I had been promoted to a senior position (300 staff) and being ill or not up to any given day was just not on.  I ended up on disability - but also taught for a year as a kind of alternate employment opportunity that I was thankful for given the hours where quite discretionary and allowed me to "hide", rest etc as needed.  However the entire experience was devastating in giving up ones career to this ailment.  In terms of disability if you have it - a long road.  I was fortunate that here in Canada I also got disability from the government - they didn't fight me, however it took a lot of effort to deal with the insurance company that my employer has.  Be strong and be clear about the pain.  I have both deep pain and surface pain - frequency, duration and intensity are all different.  It is important you document it and be clear - it isn't just "pain" it is complex pain that varies during the day.  I have done all the drugs/neurostimulator implant etc.  Now it is primarily narcotics and various topical creams.  However some days are totally wiped out other days are more managable.  THe problem for employment, volunteer work, social engagements is that you never know how much capacity you will have in any given day to do something.  Plus no one understands what it is like.  I do realize some people have it worse with trigeminal nerve pain for example.  FOr seniors PHN is the leading cause of suicide as a result of chronic pain.  I think for cancer unfortunately the pain in many cases is short lived along with the person.  PHN is not terminal.  I even went for accupunture, had botox injections, had hypnosis and mindfullness based therapy.  THe last two did help to some extent but is basically about zoning out when the pain is really bad - you still cant do anything while zoned out.  I also heard marijuana helps - i take the pill form but it isn't the full range of drugs that you get from the "weed" .  I wish I could be more positive about it all - one changes their lives to cope but the impact is still huge.  Given you are at the 2 year mark and relatively young that will be to your advantage in dealing with this.  I could not even bare the feel of a shower for years but in the last year have been able to shower again and not be in terrible pain from it.  There are experiemental studies using ketamin infusions into the brain to disrupt or rewire the pain pathways which is showing some success.  For me I wish I could have a topical that would be more numbing but that doesn't seem to be possible.  I even asked for third degree burns or frostbite in the hope that it would totally destroy the nerves so they would feel nothing.  However was told that wasn't possible although thermal distruction is used on occasion but it has to be a guaranteed terminal condition before that would be done.   I also tried the chili peper capsaicin.  Went to florida to be treated with Quetenze given not availalbe yet in Canada.  It was the most painful procedure I have had in my life - truly 2 hours of agonizing at a 9 and 10 on the pain scale. I was actually clawing at the walls just to do something.  Later was told many patients are actually put under in the hospital before the product is applied.  It didn't give me any relief - maybe for a few days.  However everything is very specific to the individual - what works for me or doesn't may or may not work for you.  Keep trying and feel free toask me questions.  Perhaps this site and provide some of us with the understanding we are not suffering alone.   take care   jim   

My sympathies... You don't mention Lidocaine patches or cream. Have you tried them?

Hi croft4penny

I use the patches not the cream. I can wear the patches in the day. I don't think its auto immune. I had a few courses of antibiotics prior to the shingles outbreak. Although pernicious anaemia does run in my family, I've been tested for that and it's not that.

This is to everyone! I am located in the US and I know countries will vary. I got shingles in the same area in February and have had PHN since. I can't wear a bra all day and excruciating doesn't describe some days. I have tried EVERYTHING, drugs, acupuncture, lidocaine patches, capsaicin cream and then the patch, and nerve blocks. Hydrocodone will work for about an hour and I refuse to be on pain killers the rest of my life.

I FINALLY have found something that works. It's a Spinal Cord Stimulator. I have gone through the trial and have the implant scheduled for Nov. 12th. It's the first time all year I jabber had relief and can wear a bra and sleep without pain. If you have tried everything and feel hopeless, I can tell you there is an option. They say it only works on 50% of PHN patients and feeling blessed to have something. Thank God I have fantastic insurance because it's not cheap. I know surgery is going to suck but at this point worth it. Hope you can find relief as this is the only place I feel people actually understand what I go through on daily basis.

I had  to go and see a surgeon who works with  "Nerve" issues the other day and I was on tramodole  and amitriplene, I  and gabapentin.

He told me that I must come off the Tramodole straight away because  the tramodole is counter acting  with the Gabapentin and amitriplene.

 I am also on  a patch of 125 mg for my arthritas. But I do hope angie your meds are sorted to help you soon   take care Jocelyne   My days are very mix, it also depends on what I am doing in the day time,  as its true if you stress even just going shopping or  trying to hurry with things yes it hurts and all you want to do is go to bed and cry.  Take care Jocelyne Cambridge UK

Hi Kimberly,

I'm very keen to know if the SCS has worked for you?? My mum has had PHN for 2 and a half years now. Nobody has mentioned this treatment to her. We are in the UK. After reading your post I have urged her to mention it next time she sees the pain specialist. She has it in exactly the same place as you (cannot wear a bra) and I have hope that she might be helped with this treatment. If you could let me know I would be so grateful. I just want to help her to feel better. It is such an evil illness.

Fran xx