Can PHN pain move from the original site ?

Posted , 11 users are following.

Hi everybody ..

I am recovering from shingles for 5 months now, it affected my right had side , it started with back pain . Which I though was a kidney infection .. The rash appeared around my waist down around my tummy .. I have had PHN in that are which is bareable , burning , stinging and aches ..

But the question is can the PHN move ? .

I now have pain on the opposite side .. The pain can run down my back , buttocks and thighs .. And it can burn ..

I know if I excerte myself with certain activities the symptoms are similar to having the shingles again ..

This has been the first week I have had where I can do a little more without feeling so tired , but I made the mistake of doing a little garden work and the pain has come back ..

I would be grateful if anyone has has a similar experience just to put my mind at rest .. Or the do'a and dont's recovering from post shingles ..

Best wishes yvey

But the question I would like to ask is

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15 Replies

  • Posted

    Very sorry to hear that is the case.  From the people I know and myself with PHN that has not been raised.  However depending on what nerves are impacted one can understand possible impacts on others.  I do think you need to discuss this thoroughly with your pain specialist.   

    I was also going to note that I recently got my shingles vaccine.  I was not in the right age group to get it originally - although age has now been reduced.  The thinking is that even after shingles and PHN the vaccine can still provide protection from future attacks (or at least reduce the negative outcomes).  Has been a couple of months and no side effects.  I wanted to make sure there was no risk of triggering another round of shingles so had left it for a while.  However I was reassured that risk was very small and for me the risk of having another bout without taking the vaccine is just too big of a risk.  My drug plan also covered the cost - about 200CDN.  Although would have paid it regardless.  Drug plans need to see the cost of prevention/mitigation of disease is a small price to pay vs treatment/coping costs.  

    In terms of the pain I am finding the narcotics are allowing a lot of breakthrough these days.  I am pushing for the cryogenic treatment given there is little else that is now possible - have tried everything (well almost) jim

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    • Posted

      Hi jim ,

      Thank you for your reply ..

      I have discussed this with my GP .. He doesn't really know , but I can thankfully say I havnt been in great pain like yourself , it can just be uncomfortable and can limit me from doing things which is more frustrating.

      You also mentioned the vaccine which I can't even think about at the moment , as I had a recurrence of shingles, but it was just a small cluster on my lower back , so I will have to wait at least a year or until I am free from having shingles in that time , but I am still reluctant to have the vaccine incase I have a reaction . But it is good to know you havnt had any major side effects ..

      But I will be seriously thinking about the vaccine as I am 55 and I really couldn't go through the pain I experienced .. But it has taking me a long time emotionally to get over shingles as I am still recovering.

      But jim thank you again for taking the time to reply .

      Best wishes yvey

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  • Posted

    I can only tell you that from my personal experience the PHN hasn't changed location. It has always started behind my ear and progressed down my neck to my shoulder. I should also mention that my pain became so severe the other night, that I woke up screaming. My neurologist has now prescribed carbamazepine, which I gather is pretty strong stuff. It makes me a bit unsteady, but perhaps that will go away once I get used to it. It definately releives the pain to a moderate degree. I'm still taking garbapentin and cymbalta as well.
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    • Posted

      Hi penny ..

      Thank you .. As I have explained to jim .. I have had a recurrence of shingles in a very small cluster on lower back .. But as far as the pain is concerned I am not on any pain killers , I didn't take any antivirals due to being allergic the first time .. But I did take them the second time as I didn't want to go through the pain I had before, I took the risk as I thought I would rather go through some side effects than go through the pain again .. But within a week the cluster had cleared up and no ill effects , I am more imotionally effected and suffering from anxiety rather than any pain .. As my phn has moved to the opposite side which is really .. Burning, tingling and some discomfort which effects what I can and can't do ..as still very tired at times ..

      It just feels like a long , long process in recovery ..

      But I wish you well and thank you so much for replying ..

      Best wishes yvey

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    • Posted

      Hi Penny:

      Those are strong drugs and impact people differently.  I have tried them all with little success.  In particular the Cymbalta impacted my ability to make decisions - it changed how I perceived risks and it also changed some behaviours like if you can believe needing to buy certain things - suddenly felt I had to have items that really wouldnt have bought.  Those behaviours stopped when I went off the meds.  Scary given one doesn't perceive the change.  Also some of these drugs have suicide warnings - again the whole risk perception process changed in lowering inhibition barriers etc.  However if you are getting pain relief it would be hard not to continue with these drugs even if there are major side effects.   wishing you well jim

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  • Posted

    Hi well I sympathise totally with you. I have had recurrent shingles since my middle twenties i am now fifty three. To answer your question yes the pain can move . The virus affects your nerve endings and therfore pain and discomfort will be felt all over. You will find activity can aggrevate it because of this. Over heating your body knocking the affected area etc. After an attack it stays in your system for five to six months or more. You need to do gentle hradual excercise . You may never get another attack but it can happen so when you feel symtoms get straight to your doctor. Hope ghis helps jules
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  • Posted

    Hi,

    I think, technically, the definition of PHN is pain in the original site of shingles. However I also have pain that has 'moved'. I had shingles in 2004 round lower torso, followed by pain up spinal nerves (an inverted ‘L’ shape). After 18 months of gradual reduction it began to rear its head again. A year later I developed pain round upper right torso (joining top of L shape), along with new pain and increased sensitivity to external stimuli. Was originally told it was PHN again, but then pain consultant queried it, so was referred to neurologist. After tests (MRIs etc due to young age) diagnosis is ‘neuropathic pain - cause unknown, with a history of shingles’. From what I've read, and following discussions, the nervous system has plasticity, which is how it repairs itself. However maladaptive plasticity is when the nervous system adapts badly (from the French word 'mal' for bad). In this case it's like a very bad re-wiring job, where a damaged nerve misfires and gives information to the wrong connecting nerve, which then feeds upwards to the next nerves etc up to the brain. The brain then responds to the signals it receives and sends down a response (or the wrong response), and so it gets worse. I guess the wider changes are due to chemical changes that occur in the central nervous system when it's been 'assaulted', in our case by the HZ virus. Chronic pain isn't fully understood yet so there’s a lot of uncertainty unfortunately. I hope you find some relief that works for you/enables you to cope with it. 

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  • Posted

    What was explained above is exactly what I am going through right now.  

    I started with Shingles in April. Have never had such pain.

    After about six months I was getting weeks free of pain, then it would return.

    now at the moment my pain has moved from my shoulder, to my waist now it is across my back at the base of my spine.

    i despair of it ever going away completely

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  • Posted

    Hello, the symptoms you have described are identical to what I am experiencing.

    i started with shingles in April 2017 and the pain was something I have never experienced before.

    Over the months I have had a couple of weeks here and there free from pain and I think “oh it’s over” but then the pain returns and the feeling of tiredness all the time.

    There seems to be no relief from it.

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  • Posted

    I totally think it can.  The pain I have is around the site where the shingles had been (over the spine).  The rash went around my middle to the left side of my stomach.  I get more pain on the RIGHT side of my spine and over the spine.  My pain management specialist says she really hasn't heard of something like that but considering we are talking about nerves, anything is possible.  Plus I had read that some shingles outbreaks don't necessarily include a rash (not common but can happen) and I have to wonder if I had some area affected on the right side that I didn't really know about.  But I will say this...I had the shingles 3-4 years ago and I am still dealing with the pain and am at a loss on how to control it.  Nothing seems to be working.  Still looking for something to knock it down a few notches at least.  

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  • Posted

    Yes i think it can. I get pain all dowmn my leg also across the other side of my body.  Shingles lives in your nerve endings .  Its a horrible debilitating condition especially when it reoccurs. 

    Try and look after yourself when you get it. Rest, go to your docs, bug them every time. Avoid stress, not aleays easy.

    Dont sunbath especially where you have haf the shingles. Try not to wear tight clothing. Use suppressents from docs it will help keep it at bay. Im on them daily now as ive had it for 30 years. It affects your whole body so just look after yourself take time off and rest .hope this helps

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  • Posted

    I would like to thank everyone who posted to this site. I don't know why, but I just had written about 5 paragraphs here, and hit "post reply", and then it disappeared into cyberspace. But thank you to one and all who posted here previously, you answered questions that I had, thanks so much for sharing your experience, and I wish you all health and happiness.

    Sincerely,

    Cathy

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