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

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.

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.

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 enduringits 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

Hey everyone. New here. I'm sorry for all the pain you all are in. I'm right there with you unfortunately. Some days my pain is through the roof. Some days I can deal with it. Today is an okay day. Yesterday was unbearable. i take 1800 mg of Gab. and Alleve in between. I am a teacher who thank God has been approved to teach virtually from home this school year. i honestly don't know how I would teach each day in the classroom. My pain is on the right side. Bra line is excruciating most days. On bad days I just feel like mmy whole body hurts. ☹ Hope to learn from you all about coping with this nonsense!

Yes to your first question, about work related sparks that bring about not so tolerable above Level 7 pain out of a scale of 0 to 10. I Suffer from PHN since 2011, in the eye region. Pain subsides now and then, but my triggers for sure are, humid weather, hot weather, sweating "exertion from work or play", bad diet, excess sugar, salt, processed foods, snacks, chips, fatty foods like red meat, pork, etc. Excitement good or bad "trivial" , laughing too much, which i can not seem to refrain from doing most of the time. Cause it also makes me feel good at times.

Tried everything thrown my way through prescription meds, pain killers, ointments, patches, etc, etc. Nothing helped, most made things worse for my mind body and spirit and increased pain which is not very good, when you have to try another method and have exhausted all non-invasive therapy. I have yet to meet anyone face to face, who has gotten better with anything i have been prescribed, over the past 10 years. And everyone i have met face to face and talked with who suffer from PHN where i'm affected never got any good results or lasting pain relief from invasive risky techniques i choose to avoid.

Gallixa Skin Cream is what i use only now since 2014-2015, for instant pain relief and lasting pain relief for hours, with no side effects or irritation to my skin and pain area's. It does not eliminate or cure anything completely but works much better than anything i ever tried which covers everything from eastern to western medicine, acupuncture, etc, etc. Aspercreme is a popular choice and lidocaine but they did nothing overall for myself even when applied a few times a day for weeks at time in different intervals over the years, lidocaine made me sweat badly and irritated my skin most of the time. works for some people i have heard. But not a very good choice for severe or extreme PHN pain in my opinion.

CBT Therapy and Complete overhaul of my diet and exercise regime after the first 5 years of PHN helped me improve the next 5 years with less bouts of extreme pain that wrecks you inside and out from leading a normal "QOL" quality of life for yourself and other around you. I was very negative for long spans of time the first 4-5 years. Unable to work, got divorced, lost my connection with family and friends, all i can say is consider yourself fortunate if you have someone to take care of you or keep u company during the really bad times which can last for weeks, if not months into years for some of us unlucky ones, but you have to remain strong and committed to improving your self or the pain just cripples your mind body and spirit and forces you into isolation from everyone and everything you used to like being around and apart of.

If you wanna talk feel free to respond on here, even though its been a while since you posted messages.

I check it a few times a week now.

Regards,

MVM

Yes, keeping busy helps to take your mind off it, but once I slow down it seems to have made the pain worse. I have been suffering for 8 years now.

I have tried a lot of treatments like others, but have taken a number of them off the list to try because others have reported back that they didn't help in the long run. One I tried at a pain clinic was "scrambler therapy", it tries to make the nerves relearn "normal". That did not work for me, but not a lot of sufferers have tried it, so hard to tell.

I have just started using Gallixa, along with Aspercream with Lidocain. So can't give much about that.

What I want to ask others was how often they take Gabapentin when they use it. A number of others say every 3 hours (some even get up at night to keep to the 3 hour spacing). What I think I discovered is that if you go past the 3 hours, you get hit with sharp, short pain flashes. Is this a "withdrawal" others speak of with Gabapentin? I may ask my doctor if I can up my dose to every 3 hours and see if that gets rid of that sharp shooting pain. Right now I usually have an attack at night which wakes me up and I can't seem to figure out what else might be the cause. It usually keeps going for up to an hour before it quits.

At this point I'm not sure what else to try.

I have had facial herpatic neuralgia for four months. Pain was a "9", with kidney stones being my only 10. However kidney stone pain would come and go, while this has been consistent. I have found aerobic exercise (indoor rowing) distracts from the pain during my workout and for 30 minutes following. Also staying busy both physically and mentally helps (cooking, learning guitar, competing in games). Aloe with 4% lidocaine has been tremendously helpful (sometimes up to an hour after applying). I think my Gabapentin helps for a few hours although it's difficult to quantify. Lastly acupuncture definitely helped me. My 1st 30 minute session reduced pain by 50% for two days. Following weekly sessions did about the same but for 3 to 4 days. I had acupuncture today and my current pain/itching/irritation is a "4". I keep hoping either I will get use to it or it will greatly diminish, because it sure does suck. Good luck!