Having deal with PHN now for 7 years it still is important to me to share information with others that are afflicted by this terrible condition or with others that suffer from chronic pain. Important because it is reassuring is to hear how others are impacted and trying to cope in their lives. It is terrible to constantly have to turn down or cancel social engagements because you cannot bare the pain, are so distracted that you can't focus on a coversation or do an activity that you enjoyed before. You get tired of responding to people "how do you feel" "how is it going" and many times you dont look that bad. One doctor said PHN is like the pain of cancer but without the relief of death. Not looking for sympathy from others but it is tough on family and friends given they dont really understand. I tell people now best the pain of a stinging nestle and worst is like a bad burn/scalding and rubbing sandpaper on it. People also dont understand (as I dont as well) why it strikes when it does. Everyday for me - but usually later in day after I have had to much irritation from the clothes. I want to say thank you to a number of people on this site for giving me my sanity back.
thanks
jim
8+ years I've suffered. Things aren't as bad as they were but I think thats because I now suffer from Polymialgia Rhumatica (PMR) and the steroids I take for that reduces any inflamation so PHN now only feels like somebody is holding a nerve pressure point in a vice not like they were trying to rip my arm off at the neck.
On a good day, it reduces to an ache running down the left side of my spine, but even this gets worse as the day goes on and by the evening it feels like restless leg but in the spine and believe my it is most unpleasant. I find though that it follows a pattern if I'm in for a rough time, first I feel as though I've been bitten then after a few days I feel like it's sunburn and then the real pain kicks in.
Tramadol taken one at a time each hour until the feeling becomes bearable is the way I manage it, with one Amitriptyline before bed.Trouble is, if I take too much (say three capsules in 2 hours) I am Zombied the next morning. It's a trade off.
I too get wound up when people think I,m looking well "(you mdon't look ill to me)"
I am suffering from PHN for last 2 years. I find this forum very informative and have picked ideas to cope up with PHN. I am struggling to save my job . i have changed my eating habits to pure vegeterian. Reading one paragraph every morning from motivational books. Hearing soft music helps. But after 4 days of going to work for 9 hrs every day , on the 5 th day i am unable to reach my office due to severe pains and energy loss. I just put up a smile when people ask about my health condition. I am hopeful that i will be able to come out of this painful situation!
Thanks
Atul
Hi Jim,
Does anything make it better? Any cream, medication, vitamins? Anything? I am 39 years old and have had this for a year now and can not imagine living with this pain for the rest of my life. Has it gotten better at all? Do you have many good days or are they all bad. Looking for answers... thank you! Hope it goes away for you soon!
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
It is a mysterious problem and the docs don't seem to know much. Tried a low dose of amitrypiline last night but slept way too much today so don't know I can take that avenue. I will use cooca butter in my groin area because it is very itchy.
It can fade away but then come back...wierd.
I am allergic to drugs and hypersensitive to drugs and that is why amitripline made me sleep so much. It is not an option. I am 69 and no longer work and this is just another drop in my bucket of woe.
Hi, Jim. I would ask how you are feeling, but I already know what that pain is like. Rubbing a burn with steel wool is a description I use, too. Anyway I hope that you are having a pretty good day so far. Haven't heard anything new. I hope to find out about the ketamine, lidocaine cream I read about. I'll let you know. Regards.
Patricia
I had a mix of lidocaine ketamine gabapentin. My pharmacist recommended some changes that he has seen with patients including increasing the ketamine conc. I am having it filled this week and will see if it helps. WIll let you know. I find lidocaine of limited help. Once you apply it more than once a day or even daily it loses its numbing potential. Have to apply everyother day I find to help. ALthough now I question if it helps at all. I also add in some lubricants that reduce irritation from clothing which always has to be a soft cotton that is snug but not tight and never ever loose.
Lastly it is so hard to remain upbeat. I am having terrible problems with the fentanyl Teva patch that replaced duragesic here in Canada. I wrote the manufacturer. For me the Teva patch stops sticking and one doesn't notice until the pain starts and then to make it worse the withdrawal sets in. 6 to 10 hours of misery with pain and withdrawal - for pain you want to lie still and meditate but the withdrawal makes you anxious and totally restless/insane. Although one knows it will come to an end it is horrible to endure. They gave me more narcotics for breakthrough but I told them when you are on 200 mg/day plus equivalent oxycontin there is very little you can do to stop breakthrough pain at those doses. I am going to admit i even looked at dignitas in switzerland who deal with people with terminal illnesses and/or unrelenting pain. Not that I am there but who doesn't think about those things when one is desperate and despondent. at a certain point you even stop talking about it to others given you aren't looking for sympathy and have had enough of burdening or concerning family and friends. jim
I don't know what to say. I found tha resting is my best choice for pain relief. Doctors here just interested in making money, very arrogant, don't know what they are doing. Even want to lower my aspirin based pain med.
Sometimes I feel like dying too but won't give in..."don't like the ba.tards grind you down" type of thing.
That is the only strategy that works when it is really bad regardless of the medications. However when the number of hours per day of resting interferes with doing anything else in life (there is a limit to how much on can only read watch tv or be on the internet). also find once i am sleep deprived mood and disposition is negatively impacted. you focus knowing that there will be recovery but a tough act to keep going.
Hey! Sorry you are having such a rough time with it all. It's a full time job handling all the meds, topical, etc. And like you said each day the pain is different. Hate to admit it but I think we are just screwed!! I tried a 10% lidocaine cream! then put on the Tommy Copper knee sleeve which covers the worst part on my leg. I think it did help me get around better, at least I could get dressed to go to the grocery store. But, I'm going to have to be honest with my dr and tell him the Tramadol isn't really helping. I think it is time for something stronger! Does the Teva patch help when it sticks? What about the Lidoderm Patches? Well Jim, I wish you felt better. Just hang on and take it a day at a time the best you can. That's what I tell myself anyway! Take care....Pat
Yes, I agree with you. I have to walk up about 20 steps with heavy groceries. Also I like to cook and must clean. Would like to get out and about too. Swimming has been very helpful for me with other health problems.
Mostly I am annoyed with the health care people in US who are arrogant and never listen. Pain is a bummer and can destroy your personality and your ability to do things. Other people do not want to hear your problems either. So it is a viscious circle to get help. I went to two pain management people and they just don't listen and won't order retesting. The test results were compromised and that is why I wanted them to be reordered. Also they walk in and say "I know what it is" and that is ridiculous.
Keep yourself busy! It distracts you from the pain. Try to find the equivalent to Anecream where you live. It is a 4% Lidocaine cream-- not an ointment. It gives me major relief. I also take Gaberpentin every 3 hours, so keeping busy keeps me awake.
Hello, Jim. Have you been feeling any better? I haven't seen any new postings or information from you and was wondering how you are doing with the management of PHN symptoms. Hope you are well! As can be expected anyway!
Patricia
Being a victim of this past 6 months,&still suffering it,what one doctor told you made me to burst out laughing!But unless he also was a victim,how could he describe it so succinctly?Agree 100% with whatever I read above.Being grounded abruptly from an otherwise active&healthy{more than most of my colleagues in the age group}life suddenly by GBS,when I was paralized in an ascending fashion upto my chest &having recovered from it after some costly treatment with some human immunoglobulin injections,got back movements of the body some 25%.Cant walk any more on two legs but three!Entire life style changed abruptly,but then I started counting my blessings,which were many,like it happened after 10 yrs after my retirement from Indian Railway service of working as a train guard for 38 yrs, complete outdoor round the clock&round the year on goods,local suburban electric,passenger&lastly for 10 yrs on mail&express trains.I have an able&dutiful son&wife who look after me and also a decent pension to take care of my living etc.Then this HZ descended 6 months back which was diagnosed&treated by my doctor by timely correct medicines.Now the skin is smooth after all the blisters healed&disappeared leaving a lightly colored patch on the left side below my left arm from midriff to backbone on the back.I am lucky not to have got it on my face with danger of affecting eyesight!
Presently the pain is quite enjoyable like the joy one gets while scratching a scabies infected skin!Mostly it is evident night time before going to sleep,when I derive good sensation when my wife puts her warm palm over the patches&slightly presses the swarms of titillating organisms below under the patches below the skin.I am presently confused whether I should report all these sweet painful sensations to my doctor or go on to enjoy the suffering!How long this condition will go on?
Jim have had post hepatic neuralgia for a year 1/2 now. It is in my spinal cord which cause pain from headaches to disc problems and so forth. I have a question for you and that is how is your diet? My doctor has recently told me to quit sugar which I am trying to do. Also I don't know if you have therapy where you live but I go to a doctor who treats me with a custom care unit which is frequency specific micro current and it helps but you have to go at least once a week. God bless you, that's a long time to deal with this.
HI Daune: Havent changed my diet but must admit have never noticed any changes even if there were variations. I have the electrical stimulation unit embedded into my body. it doesnt really help with the surface pain. the "plus" you really on the 4 or so hours one has were the pain is either absent or tolerable as in say under a 4 out of ten. thanks jim