Do you experience good and bad days based on your activity?

Posted , 4 users are following.

I'm asking because I find that even though I spend my days at a pain level of 4/5, if I do too much I get shot up to an 8/9 for days. My Shingles covered my left hip and down my thigh. My main symptoms are skin sensitivity, aching and stinging. I've discovered there's a list of things that if I do them my days get worse, such as: Running, Walking, Aerobics, sweeping, moving around for hours (hours of shopping is fun but I'm down for two days). I've had to start lifting weights to get exercise. Pants sting so I work from the office 1/2 a day and the other from home so I can get relief. Does anyone else notice that what you do makes the pain worse, or is it just me??? My oh so smart brain keeps telling me that nerve damage just hurts regardless what you do, but I swear what I do affects it greatly. I swear I'm starting to go nutso.

Also weather changes... do they affect you??

FYI: I take Gabapentin regularly and use Lidocane patches (which are a God send), and then I have Butalb and Hydrocodone as needed. But I don't like to take things so I take my Gab and Lido and I'm light on the others.

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  • Posted

    So I have been living with PHN for 3 years now. It was on my left bra line side. I wear tank tops with built in elastic and bras w/o wire to help alleviate the pain. I have literally done EVERYTHING there is to try to find relief (gabapentin, Lyrica, Capsesin Patch, Thoracic and Spinal Nerve Blocks, a spinal cord stimulator implanted and nerve ablation) I actually have found the more active I am the more the pain stays at bay. it is when I relax is when it REALLY likes to fire of. I get some relief, which is better than nothing, when I take Hydrocodone but I will not take during day. I am hoping to wake up one morning and just be normal again. I was 35 when all this started. I wish you much luck. I just know with activity, could be because of where mine is located, it keeps it at bay. I have noticed colder weather plays a huge role, as well.

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    • Posted

      Thanks for the response.

      Regarding cold weather, i have noticed since winter really hit in my area the pain has been constant and just unreasonable.

      I'm glad activity helps you. I know it helps my ability to cope, which is why limited activity is so infuriating. That and I feel like my life experiences are being limited by this ridiculousness.

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  • Posted

    Yes, I see variations also. It's been 2 years for me, and since it started I have had a lot of improvement. But I do avoid certain motions that aggravate it. Mine is on my left side, similar to Kimberly, but it's usually the left shoulder that's most uncomfortable. I haven't worn a bra in over a year, even the "comfortable" ones set it off. I avoid lifting anything over 8 pounds (that a gallon of liquid) and am careful with twisting, bending and reaching. Sometimes I can do those activities without problems, other times it definitely makes it worse. Ironically, I do compete in ballroom dancing, yeah long fancy dresses, waltz, fox trot, the whole bit. It's at a pretty friendly level, but still takes a lot of work. So I keep active but sometimes we've got to cut back on specific figures or movements if I have more pain. I truly believe it's helped both physically and emotionally.

    There are so many other things that can cause variations in pain besides movement. I'm so sensitive to gab, that even changes in the generic made my pain worse. Essentially I was going through mini-withdrawals due to the differences. Some people have problems with heat, others cold, like you. I have allodynia now, extreme sensitivity to sensation so I may have to change my tops several times a day when it's bad. And NO hugging or touching my left shoulder, by ANYONE! Tapering off gab also increases the pain, withdrawal isn't fun. I was at 2700 mg two years ago, now down to 600 mg/day. I also use Lidocaine with Aspercreme, a previously prescribed NSAID, and Tylenol, three times a day.

    I've had a pretty good stretch the last few months, but because of the taper, the pain's definitely gone up. I used to say I was 80% better, the pain usually between a 1-3 at the worst. Now it's back up to 3-6. But I'm hoping it will improve again.

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  • Posted

    yes i definitly feel things differently on diff days somtimes ill think ok now were getting somewhere only to have a total relapse the next it does seem to be always there but when kept insanly busy at my job 55 hours a week running round a kitchen i have complete moments of forgetting about it triggers for me seem to be drastic weather changes

    later at night pre storm and then sumtimes dunno why??

    i must say when first stricken it was a ten in pain   that was two years ago  im down to a five or when flared up a 7 or 8   but is bearable  im not here to duscourage but encourage the fact that it does get bearable   had it twice second time as in me now it was insane  it ruled my life  for a yesr of that time i didnt know what i had so i think that might have added a little bit of an extra edxge to it   so  ya i felt the need to update cause i do want to be a part of knowledge and positivity to this bizarre virus  
    
    the healing is slow slow slow  im talking years can go by with a slow ease up  you cant think in days   like oni hope tomorrow ill wake up n itll be gone  youll torcher yourself that way  cant say ive found anything to speed mine  theres no wonder cure but days of enduring    its a battle mine being in my stomach area where even wearing pants hurts and holding your own newborns is too much pressure on ur midsection   i can tell theres progress for me because i can hold my kids a few mins before it gets too much and i can feel sensations on my stomach by holding my hand on spots i literally could no longrr  properly feel  so thats two years  a long two  but knowing that it does let up keeps me positive what two more yesrs may look like for me  wilk keep u guys posted     again dont want to discourage it gets more tolerable in time   dont let it beat you or define you  find a hobby   keeep busy amd find your things to take the edge off that work for u mine is a heating pad a laying flat   for wveryone seems diff     hope your alll coping and finding things in life to be grateful for   mine is my three kids and my hobby of making music and trying to keep the family business afloat     stay strong and heres to speedy healings of nerves
    
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    • Posted

      I do believe extra stress does make it worse. I think stress is blamed for too much, but with the mess our bodies are in plus the meds we're on, it worsens it. It sounds like a physical and stressful job.

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    • Posted

      Thank you, weather changes affect me also. It's like the lightening in the storm goes straight through my leg.

      Keeping busy its does help keep my mind off of it. Until keeping busy is what causes relapse and it's worse. Its just a nasty cycle.

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