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tracy62429
tracy62429

I am in a lot of pain form PHN after shingles.  I have tried a few different drugs with no luck, I have heard bout Lidoderm Patches has anyone tried them, can you get them on the NHS and do they work.

I first got the pain in early december as I had a mild case of shingles before so I knew it was shinges.   My Doctor was on holiday so I had to see a replacemant the Doctor told me she cant be sure its shingles as I didnt have a rash and to come back in two weeks.  I went back and saw another replacement Doctor who said the same.  I did get 3 spots on christmas day and they were agony.  I went back to my own Doctor and he said it was Shingles. 

As I didnt get antiviral drugs I have been left in agony from december, it is so bad I just stand a cry I can never tell when a bad attack is comming.  I really need Help I have no life at the moment. 

0 likes, 13 replies

13 Replies

  • jim66082
    jim66082 tracy62429

    Edited

    Tracy:

    I am sorry to hear about your situation.  I dont understand doctors today - they know what the road from shingles can lead to and giving the antiviral isnt going to be a negative if the diagnosis is wrong.  However missing the antiviral during the first 72 hours can significantly reduce the negative outcomes - although not everyone has the same experience.  The good news it is still really early for you and your immune system may deal with the problem.  THe majority of people don't go to the PHN stage which can be long lasting.  Typically what happens at your stage is pain relievers including the patch as you mentioned and oral narcotics starting with lower potency ones like codeine and then moving up to percocets and fentanyl with doses adjusted up in each case.  What I found most importantly is the right type of fabric and fit to minimize the irritating friction that triggers and aggravates the pain.  This forum has lots of people that can give you tips.  Again lets hope given it is early on that you will recover and people and many people do completely after a number of months.   Also talk to family and friends about the pain.  Because it is invisibe people dont understand and most of us hide it/downplay it are embarassed by it etc.  It impacts work and social situations and you shouldn't feel marginalized given that leads to stress which then impacts on the pain.   That is my quick response given I was just on the laptop when your email popped up.  Again uou are not alone and this site will provide you with support and advice.   If the pain continues ask for a referral to a pain specialist - it takes time to get one, so better to start the process if your physician early.  Take care   jim

    • tracy62429
      tracy62429 jim66082

      Posted

      Hello Jim

      Many thanks for your kind words and good advice.  You have given me hope that this misery will end at some point.  My heart goes out to anyone who suffers this pain.  You are right most people don't understand.  I still have to get up and go to work each day, they have been really good and have even ordered me a new chair.  I used to love taking my little dog for a walk, now when I take him I am terrified I will have an attack (it has happened a few times) and have to cut the walk short as I feel so exhausted.  Most of the pain comes at night and first thing in the morning, I have noticed that 8pm is the trigger and I have had an attack that lasted form 8pm to 1am, I was begging my husband to take me to hospital but we both knew it would be a waste to time.  I am on pregabalin just gone upto 200mg twice a day.  I am a little tired but not too bad.  Praying that this higher dose helps.  Many Thanks again Tracy

       

    • croft4Penny
      croft4Penny tracy62429

      Posted

      The lididerm patches are fine, if you can tolerate their removal and the fact that they only have a 4 hour limit. I prefer lidocaine cream (not ointment), which I apply liberally to the affected area 4 times a day. Unfortunately, the cream is not covered by Medicaire insurance, whereas the patches are covered.
  • croft4Penny
    croft4Penny tracy62429

    Posted

    Sorry to hear abut your pain. Since I don't live in the UK, I don't know whether or not Lidoderm Patches are available from your NHS, but it should be very easy to find out. They do work, but have limitations as I've said elesehwhere in this forum. I prefer the lidocaine cream (4%), which is not covered by US medicaire and is very expensive. I spend the money, because that's what I have to do. I also take gapapentin, amytripelene and lorazapem. All togehter that's what I need. My PHN is on my neck and shoulder, so I cut my clothing so as it doesn't touch my skin.
  • anna38464
    anna38464 tracy62429

    Edited

    HI Tracy,

    I also am so sorry for what you are goign through. I agree with Jim, it is still early on and you have a good chance of not getting long term PHN. Continue to connect with people who have experienced this on this site and they will understand the type of unique "crazy making" pain that you have. Yes, I too get flares mostly at night and in the morning, often during "down" time, watching TV, etc. I used lidocaine patches and recently lidocaine gel.See how you do with them. It is worth a try. Patches  were more difficult to try to adhere to my skin because my neuralgia is on my scalp , ear and neck.

    I am not a doctor but you may want to discuss with your doctor a trial of anti-virals. I know it is way past the window but sometimes people use them later. I had several trials of it but like you, my first doctor misdiagnosed it. Like Jim said, it may not hurt to try.

    I wish doctors became more educated about the need for a diagnosis and the various way shingles presents itself in the body. Rest if you can, and acknowledge your body is tired. I think all of us feel fatigue and I personally,tried to fight it for a long time. Now I am happy to be able to do more in the morning and accept I need to rest more early in the afternoon and evening. There are many ways to help,... lyrica, gabapentin, trazadone, ice etc. etc.

    Talk to your doctor..most important and stay connected. Remember at your stage the nerves have a possiblity of  healing  themselves .

    Take care,

    Anna

    • tracy62429
      tracy62429 anna38464

      Posted

      Hi Anna

      Many thanks for your advice.  My Doctor retired last week and I am now left in the hands of one of the doctors I saw that would not believe it was shingles.  I may see if I can change to my Mums doctor as she thinks he is good and he is at the same surgery as mine.

      I will ask about the patches and the cream.  I wouldn't mind paying but getting a private percription in the UK is not so easy.

      I am still getting attacks, its weird how one minute its not so bad and then out of nowhere you get sharp pains like some has just put a cattle prod on you. 

      I may try to get some vitamins to boost my system to fight this.

      Many Thanks

      Tracy

       

    • jim66082
      jim66082 tracy62429

      Edited

      Hi Tracy:

      That is how it is in terms of pain.  It is also a complex pain and you should express it the way you experience it.  Dont feel that you just have to say it is PAIN.  For me there are two types:  

      1.  Deep Pain that is like a bolt of lightening.  It is intermittent a number of times per day and is like a pain flash for a few seconds and usually two or three in a row.  Pain level is certainly at an 8 (pain i described on a 1 to 10 scale with a 10 being a level you want to kill yourself if the pain is non stop).  I am on fentanyl a narcotic and it helps keep this pain under control to a few times a day.

      2.  Surface Pain.   This is the most difficult to control and the pain that keeps one from enjoying life.  It is intermittent and usually happens at the end of the day at which point I have to remove all of my upper clothing.  Best analogy is a bad burn which is then rubbed with sandpaper.  Certainly the pain is at an 8 or a 9 if I dont remove my clothing.  I have tried all sorts of drugs and topicals including lidocaine mixtures with drugs like ketamine and gabapentin but it really doesnt help.  The key is a somewhat snug but not tight cotten undershirt/tshirt.  I can never ever wear a shirt without that protection unless I am wearing just a soft Tshirt.  

      So in describing your pain it is about level, frequency and duration and the feeling of the pain - sharp, burning etc.

      I found by having that level of information - usually in writing given it is hard to say it all when one feels rushed in front of a doctor,   that your credibility and the attention you get from a pain specialist goes way up.

      As time goes on and if there is no relief or abatement you need to be referred to a pain specialist.  They take time to see so I would say urge your doctor now - you can always cancel the appointment that likely will take months to get (I am sure your medical system is no different than ours in Canada re: pain specialists).

      You are absolutely right that stress, lack of sleep and having a concurrent illness trigger pain episodes.  For me it got so bad I actually had to go on disability.

      Lastly many of the questionaires re: chronic pain dont apply.  You can still walk, carry stuff etc.  More focussed on things like back pain etc.  What you also need to say that is important re: the impact of PHN is the DISTRACTION.   Your mind is so overwhelmed by the pain that you cannot focus on tasks or do complicated analysis etc in your mind given the constant pain signals.  I also had a neurostimulator implant to try to numb the pain signals - didn't help with the surface pain unfortunately.

      I know I am rambling a bit but I want to give you all the advice I can to navigage doctors and specialists that you may see.  Very importantly if you need time off work your insurance carrier will try to downplay this disability.  There are no xrays or MRI or other verifiable ways of showing that there is a cause for the pain.  It is based on your doctors opinion that you are telling the truth and on him/her building a file over time on your situation.  The other I have learned re: insurance even in casual conversation is when they casually ask how it is going - NEVER SAY OK.  I realize that is a typical response to a causal situation but it will be used against you.  One doctor who specializes in this area said and i quote said you must say "The Pain is absoutely devasting to my life but God willing one day I hope it will be reduced to the point that I can be a functional and working person again".  

      Of course tracy I hope you improve and it doesn't get to this but again given you my lessons learned from a tough road.

      (sorry for any typos)

      take care

      jim

    • jim66082
      jim66082 anna38464

      Posted

      Really good advice Anna.  In particular I like your suggestions about "living life" in the am when one can.  Fortunately I am a morning person to begin with.  What is difficult and I didn't mention is I still can't have sheets or blankets touch me at night.  I have PHN on the torso - an ellipse that goes from the bellybotton to the centre of the back.  So I can only sleep on my one side and will wake up if I roll over or if something like a sheet touches me.  Means the bedroom has to be warm.  The point really is here is disrupted sleep so even as a morning person I can be exhausted given sleep deprivation.  Sleeping pills are also not the answer given I found they are absolutely addictive.  My doctor has given me cesamet which is a synthetic marijuana drug(gives you the narcotic effect but not the high) and I take that at night when the pain prevents me from having any chance of sleeping.  I have recently written one of my pain specialists if I can take actual marijuana. 
    • tracy62429
      tracy62429 jim66082

      Posted

      Hi Jim

      Gosh I feel bad complaining when I hear the pain you are going through and for such a long time.  My heart goes out to you and I wish you all the very best.

      I don't have insurance, in the UK I am in the hands of the NHS which I think is wonderful.  I was unlucky to see 2 inexperanced Doctors. I have taken some of your advice and have stared taking extra vitamins to help my amune system fight this off.

      This is so unpredictable as to when the pain will strike, My hubby Paul and I spent 20 min in Sainsbury's pretending to look at a lamp as I had a really bad attack and was frozen with the pain.

      My pain runs from the top part of my back on the right hand side under my arm and across to under my chest.  I have now developed a 'numb' patch which is around the size of my palm from under the arm to round to the front.  I cannot feel touch at all but even though it is numb on the outside its still very painfull on the inside.  My Doctor (before he retired) said he thinks the feeling will return.  As he has retired I have been allocted one of the Doctors I saw before.  I am planning to change to the Doctor my Mum uses as she believes he is wonderful.  You can do that in the NHS but only if the Doctor is taking more paitents. If not my Mother in Law has a good Doctor I could try there. 

      I believe Stress was a major factor in me getting this as I had the most horrible year in 2014.  I lost 2 Friends an Uncle and worst of all My Dad.  We tried to move (my Dad had lived with us for over 2 years before he got his own flat and the place didn't feel right anymore) and we lost our dream home.  We have since moved but I happended in a blur of pain and I have not been able to sort things out.  Thank heavens for my 2 sisters who came round and help me empty all the boxed and get things sorted, I had no hope of doing it on my own.

      This pain is taking over my life, I don't want to let it I have things I want to do, before this I was healthy and had no problems with anything, now I am exhausted and in pain and tearful all the time. 

      I will take your advice and when I next see the Doctor which I fear will be the young one (who told me it was like having a tooth ache, that must have come from a reference book) I will make sure she is aware that it nothing like a tooth ache and I am not ok.

      Take Care

      Tracy

       

    • croft4Penny
      croft4Penny tracy62429

      Posted

      Jim's advice is right on. You CAN get some pain relief. A pain specialist is a great idea, as are the other responses in this forum. A neurologist may also be a good idea, if you can get a referal in the UK. Mine is a personal friend, and I have to tell you that his advice is to treat the pain, since despite his noteworthyness, he other advice is to "suck it up". If you look around the web for research on this you will find nothing. I even went so far as to contact a doctor in Chile to no avail. Since I can't turn my head enough to drive, my wife took me for an overnight trip to see an interventional radiologist, who perfomed some minor surgery to see if he could cut one of the nerves. It didn't do a thing.

      I have a friend who has just been informed that he has bladder cancer, so I just do what my doctors have been saying, suck it up, treat the pain, eat a healthy diet and be thankful for the life that I have.

    • anna38464
      anna38464 jim66082

      Posted

      Wow, that has to be very challenging. Yes, medical marijuana seems like a good option. Do you also have an insatiable itch along with the pain?

      It seems like you could get secondary issues by always being on one side at night. I know I could not sleep on my left for years because of my left ear. 

      How long have you had this? Even silk hurts that area? I feel for you because your sleep is so interupted. I took tizanadine for nerve pain and spasms and it also makes you a bit sleepy.

      I mention all these medicines but, as you know, none of them really take it all away. Is medcial marijuana available there? It sounds like it is. No known side effects with the marijuana which is huge since so many of the other prescribed medicines have significant sid effects over time.

    • tracy62429
      tracy62429 anna38464

      Posted

      Hi Anna this is an update from Tracy's husband I have just come across this post, sadly the diagnosis was wrong and after biopsies the results where that Tracy had Mesothelioma a terminal lung cancer that affects the plural lining of the lungs and is caused by at some time in your life coming into contact with asbestos dust.

  • croft4Penny
    croft4Penny tracy62429

    Posted

    I should also mention that tricycyclic antidefressants (amytrypiline) and gabapenten (600 mg every 3 hours) have helped me.
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