PHN odd pain

Hi Kate, I read your post and relate in many ways.  I too am 49 and now in my 6th year of phn. I thought the virus returned for me, but my doc insisted it’s extremely uncommon.  It turned out my treating the pain with lidocaine caused severe hives, as I’m apparently allergic.  So at least I ruled out repeat infection.  I have read others though who report they experienced repeat outbreaks, especially during stressful times.  I have found that the nerve pain does seem to “spread” over the years to nearby nerve lines.  Stress now increases pain levels and it’s mostly unpredictable where or how it’ll hit .  My original rash outbreak started in my upper thigh and worked up to my ribs.  I now also get the same phn nerve pain in the opposite rib area as well as lower thigh of the original leg.  So despite medical science saying not likely, I say oh yes it is.  I now have a doctor who believes me and my assessment of where/how pain is, and she does say nerve pain can radiate and even change in style and intensity.  Nerves do seem to be an in-exact science and somewhat unknown.  Hopefully you have a good understanding doc.    You’re not alone, friend!

It's fine Kate. Welcome to the wonderful world of yet another sensation from PHN!! That's called allodynia. I had shingles in October 2016 with subsequent PHN. I couldn't understand when people when would describe that sensation. Then I started having it about 4 months ago. It's defined as a painful or sensitive response to a stimulation that shouldn't cause pain. It's the over-reaction of the nerves. It can come and go. Another REALLY fun symptom is formication, yes that IS the word, spelled with an "M". It's a feeling of itchy/crawly bugs on the skin. I had a theory, and others wondered if it's actually from the nerves healing. I suggested that to a PHN researcher, and he had no idea. Helpful, hunh?

For some people a breeze can set it off, or their ponytail touching their neck. My PHN is in my back and shoulder so I can't wear a top that goes too low in the back or has a yoke, a seam about 4-6" below the neck, as that pressure will be VERY annoying. I can go days without it, then it pops up again.

Are you on preventative anti-virals? Or do you take them at the first sign of a new outbreak? I've heard that the type of shingles you have quite often reoccurs.

Kate

     I’m sorry to hear of your pain I have suffered with post herpetic neuralgia for 10 years now but mine is in my head it has caused nerve damage to the greater and lesser occipital nerve . I have nerve blocks every and Botox every 3 months so say this week nerve bock six weeks later Botox then six weeks later nerve bock and so on.i am waiting for surgery to have a nerve stimulator fitted. So you could say I understand.

   My first advice would be to get referred to a pain clinic. Secondly most cases do clear up in time but may take a couple of years mine unfortunately didn’t causing me to have to finish work at 48 years old. There are a few things you can do lifestyle change is a big thing trying to cut down stress is a must but not very easy I know.

     Medication is another doctors will prescribe epilepsy drugs which can be very effective. For my nerve pain I use lidocaine patches which you put on the area for 12 hrs they are very good but doctors don’t like prescribing them due to their cost also lidocaine cream can be applied again on prescription these help a great deal with the nerve pain. I also have anti viral tablets by me for when a shingles attack hits but I must say I have had very little attacks of shingles since my doctor agreed to give me the shingles vaccine. 

    The pain is undesirable unless you have had it I feel for you and please feel free to contact via page anytime 

    I have had many drugs unfortunately they don’t seenm to work for me and the ones that did I was allergic to.

   Acupuncture / Reiki and Bowen technique can really help it’s just finding the one that suits you best but it does come with a cost to yourself. 

  I’m sorry I can’t be more reassuring but the help is out there but you have to push your doctor for referrals. I have to travel from Wales to London every six weeks as we have not got suitable clinics in Wales. I also had nerve denervation treatment at a pain clinic in Dudley that may be another course of action for you. 

    Mark

 

Hi Kate,

Shingles is known to occur when the immune system is decreased in its function, such as it is during a period of long-term stress or during immunosuppression treatment. If you are getting repeat episodes, I would think two things might be advisable to stop the shingles outbreaks. Get the Shingrix vaccine, then do things to bolster the immune system. Vitamins are probably a good idea, but meditation (spelled correctly here, not “medication”) has been shown to help the immune system. Meditation has also been shown to help people manage long-term pain. Managing it does not mean getting rid of it, but instead doing things to decrease its effect on us and our lifestyles. A few minutes a day can make a big difference.