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PHN sufferers under 35?

Posted , 6 users are following.

kate61650
kate61650

Hi all :-)  

I'm new to the group and wanted to reach out to see if there are any others out there with PHN under 35? I'm 31 and have had PHN for 8 months. I have had a previous episode of shingles and PHN which lasted around a year and a half. I was devastated when I got shingles for the second time. It often feels quite isolating having this and not having anyone else my age to talk to about it. I find my friends don't really understand the condition, or how it has affected my life. It would be great to hear from anyone who is having a similar experience, or just any tips to help stay positive!! 

0 likes, 9 replies

9 Replies

  • anon987654
    anon987654 kate61650

    Posted

    Hi Kate,

    I'm no longer under 35 (I'm 41) but I did develop PHN when I was younger, at 27. For me it affected my spinal nerves so is a bit unusual. It lasted for 18 months, gradually dying down. Unfortunately my nervous system maladapted and it returned, along with pain in new areas and new symptoms, when I was 32. It is still with me.

    There are a couple of Postherpetic neuralgia Facebook groups which have younger people in them with lots of advice.

    Best wishes.

    Suzanne

    • kate61650
      kate61650 anon987654

      Posted

      Hi Suzanne, Thanks so much for the advice! I'll try checking out some of the Facebook groups you mentioned.  Best, Kate

  • sue2910
    sue2910 kate61650

    Posted

    HI Kate! Welcome. I think you'll find like-minded folks and some good ideas here. I'm definitely not under 35, but had my first shingles bout at age 58. I'm now 63, and have had several minor outbreaks since. The first one was actually pretty mild, comparatively, but the post-herpetic pain/stiffness/tightness has been the biggest barrier. I've always been an active person, and it bummed me out to no end to hurt almost all the time. I've described it as feeling like I was wearing a wet suit that was one size too small on the right side of my body...tight, stiff, hard to stretch out, pain from my shoulder to my ankle.

    Luckily, in just the past month, I found tremendous relief (my to my surprise) from two acupuncture sessions with a doctor who specializes in acupuncture and Chinese medicine. Some people here have had positive results with acupuncture, others not so much. Maybe it depends on the practitioner? I have no clue. I just know that for the first time in more than 4 years, I'm finally seeing light at the end of the tunnel. I've quit taking Lyrica since acupuncture, don't use Aspercreme daily any more on my shoulder/arm/back (where the shingles originally broke out), and now only need an Advil now and then to get rid of the achiness that lingers or bubbles up. I feel incredibly lucky.

    What works best for me is a combination of: massage therapy, chiropractic (the shingles virus lives in the spine...makes sense to me to keep it healthy), acupuncture and regular swimming to keep everything moving/stretched out.

    Good luck!

    • kate61650
      kate61650 sue2910

      Posted

      Hi Sue, 

      I'm glad you have found some relieve with acupuncture! I have suffered from back pain in the past, caused by a horse riding accident when I was a kid, I think I will look into finding a chiropractor to see if that helps! 

    • sue2910
      sue2910 kate61650

      Posted

      Two other items:

      1. Stress is definitely a trigger, so be aware of that.

      2. Find a chiropractor who just does chiropractic adjustments. I'm not sure where you live, but in the U.S. so many chiropractors also hawk supplements, vitamins, compounds, and "stuff" that's just income but not very effective, imho. Find one who just wants to adjust your spine and send you out the door. 

  • Geezee
    Geezee kate61650

    Posted

    I got shingles when I was 33, and soon developed PHN. That was 4 and 1/2 years ago. 

    For me, the damaged nerve is the trigeminal nerve on the left side of face. This means I often get pain in my eye and in various places from my lower cheek up to the top of my head. 

    I have tried all of the usual prescribed medications. For a few months they are quite effective in making the pain manageable if not getting rid of the pain altogether. After awhile, however, the side effects slowly becoming too intolerable. It is really difficult to stay positive when one of the common side effects is depression. 

    It is a difficult condition to manage. Stress is what caused my outbreak, and is still the biggest trigger of pain. But the condition is stressful itself - it makes it that much harder to deal with the stresses of life. I can't work hard without risking a bout of pain. Taking medication can help for awhile, but then the side effects start limiting how well or effective I can work, starting the cycle of stress and pain and medication all over again. 

    Sorry that I can't offer many tips for staying positive, but I'm happy to share experiences. 

    • kate61650
      kate61650 Geezee

      Posted

      Hi,

      Thanks so much for your response, it really helps to hear from other people who are going through a similar experience. I'm pretty sure my outbreaks have been caused by stress as well and I agree that keeping it under control now has been a big challenge!!! 

      I have been trying to stick to using lidocaine patches, and taking tramadol as needed because I was concerned about some of the side affects from other medications. I'm not sure how much longer I can avoid it because it has been really difficult to cope. I have been trying to rest as much as I can, and get gentle exercise from yoga or going on walks. The biggest lesson I have learnt is to take the time I need when the pain is bad. Initially I just wanted to push through and keep going with my normal work and social commitments, but I have realized thats not really possible anymore. I can recover more quickly from extreme pain flair ups if I take the time off I need. 

      Try to stay positive!!

      Kate

  • rorogrady
    rorogrady kate61650

    Posted

    Hi! I got shingles in 7th grade (12 years old) on my lower back and knee. I have been suffering from PHN for 3 years now. I understand the isolation feeling. Stay positive! You will get through this!!! 
  • kimberly36176
    kimberly36176 kate61650

    Posted

    I don't know where you live and want to make sure I share this with as many people as possible as I have done every drug, needle, implant, alternative treatment for PHN and nothing has seemed to help my quality of life til now. It has only been a handful of days but I will take it. It is the first time I am feeling like myself since before shingles 3.5 years ago and that is CBD oil. It is legal in the states. I am not trying to get my hopes up too much but yesterday was the first time in years I could wear a normal bra all day long without agitation, flare up or excruciating pain. I know how it feels to live in that dark place where no one understands so I love this board to not feel alone and if I find something that can give relief even for a short amount of time I want to share with EVERYONE on here.

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