I haven't been here for a while, but I'm really surprised to see that the most recent activity was weeks ago, and before that , months. I'd love to think it's because everyone is just peachy-keen, hunky-dory and fit as a bunch of fiddles. I'm slowly making progress with my PHN from shingles back in October 2016. I had no rash, so no anti-virals. Mine is in my back/check/bra line. I'm VERY slowly tapering off gab. In December 2016 I was at 2700 mg, now finally down to 600 mg. I hate the dang drug and will be glad when I'm off it. I don't think it's giving me any relief now, and with each successive taper, the withdrawal is the pits. But I end up better and the end. How's everyone else doing?
I am replying on here for the first time. I have followed every ones posts for a long time. I have had PHN for 8 years. It is classic shingles, right side from navel to spine. I have tried everything. Finally got off of Gab. I only take Tramadol. I had a nerve block a couple weeks ago, lasted 2 days. I try to keep it to 3 a day. I have some good days, Mostly bad. I use compression under garments. Panty girdles, soft camisols. I by them at least 3 sizes too big. Just snug, i can breath. Just wanted to give you some of my background.
Hi Etnaca, I'd say I'm glad to meet you, but as the expression goes, I wish it were under better circumstances. Has your PHN improved at all over the years? Mine has gotten quite a bit better, but right now I'm discouraged again. As I taper from gab, (VERY slowly and carefully) I have more pain etc. I had hoped that by this fall when I'm off the gab, that my PHN would be very minimal. There are so many variations, that I know it's hard to predict. In the past, I was pretty optimistic, as for a few months it seemed to make quicker progress in the decrease in pain, now, it's a bit different. It's hard to tell which is the gab masking the pain, worsening the pain or if the PHN is getting better or worse.
I'm sorry the nerve block didn't work. Many of that type of treatment seems to be 50% or less effective. I'm leery of any even slightly invasive procedures and I don't know if I'd take any more meds when I'm finally off the gab. Many days I think it's causing me more misery than the PHN.
Hi, I've had PHN for about ten years . Left side of the spine between the shoulder blades. I still sometimes get a rash going up left side of my neck which itself is more an irritation than a pain but the pain kicks in a little lower down and sometimes it's agony. I take amitriptyline and tramadol but I try to limit the tramadol to two a day. When the pain gets really bad, generally at night when I can't do something to take my mind off it a bit, I might go up to four in a day. I take them anyway, irrespective because once the pain kicks in, it's not easy to get control over. I work on the premis that it's better to stop it getting going than trying to cure it.
Hi Babs, my pain isn't as bad as it was in the early years. I did taper off Gab. Slowly and i do think my pain is worse but there were so many issues with taking it. I also take Amitriptyline seems to help. Its very hard for me, to stay ahead of the pain. I end up waiting it is bad and the tramadol takes so long to work.
Oddly, I found tramadol took a while to kick in but if I take a 15 minute walk after taking them I find it works quicker . Maybe a bit of exercise speeds up metabolism /digestion and maybe gets the ticker going quicker so speeds up the distribution network.I only take a walk if I'm late in taking tramadol and the pains got going, but if I take it before the pain kicks in it's usually OK.
I've had PHN for 3 years steady. I had flare-ups a few times a year for about 6 years before that. Oddly enough it's comforting to know that I'm not the only one with this lingering issue. Sometimes I think it's just me, all in my head and I'm being a wimp. So thank you for sharing.
I find it helpful too. I've gotten pretty used to its ins and outs in the 2+ years I've had it but yesterday was a new one. Mine is along the bra line, front to back and the pain generally is in my left shoulder. However, I'm used to the random, different types of pains that occur right, left, front, back, upper, lower, sharp, dull, aching...well you all know. But yesterday for 12 hours, I felt like I had a pulled muscle in my back rib area, or that someone had kicked me. Every little movement made it worse. I KNEW it was the PHN, but I'd never had it like that before, not there, not for 12 hours. I started to think it was something else, but I didn't know what.
Well, today it's gone. I'm glad but puzzled. I must have aggravated it earlier in the day, lifting something (that was only about a pound) and for some reason, the dang nerves and brain stayed haywire. So, be prepared for anything, right? I'm exhausted today, which I guess should be expected.
HI to anyone out there with PHN. I thought this site had died. I am in year 4 of this painful and frustrating disease. Will provide detailed update if others are still involved. We moved and I had to get resettled.
I'm still here. I wonder if others have their notifications sent to an email they don't use often? I use this one every day.
Still getting settled in our new home. Stress of this move seems to have exacerbated the PHN pain. Has this site faded out?
Well Kalgranny WE'RE here and that's what matters, right? I totally agree that stress makes the PHN worse. I had more problems during the holidays. Also, the extra physical activity may contribute to that. Right now, I'm doing quite well. My shingles was back in October 2016 and I seem to one of the lucky ones where the pain is improving. I can point to a number of reasons why, but I'm just glad it is. BTW, I've read of people even 15 years later see a dramatic improvement, so don't give up!
Now that you're more settled, can you take it easy, rest more and feel better?
Yes. That's the plan. This site was so active. I wonder what happened?
I stopped coming because I got more active in FB groups for one. But the other issue was the updates that made it SO difficult to use. The constant pink color with no options to correct were very frustrating. I finally wrote them a few months ago and said if you're going to point out our errors, can you at least give us a spell check that works?! I've noticed it does now. But spell check doesn't work at all with my iPad, if I ht the shift key to capitalize a letter, it keeps it all caps. Then things were being held up for days or weeks for moderating, even tho there was nothing wrong with the posts. I think a lot of regulars just got fed up. In the problems of the world, these are minute, but why come to a sight if it's such a hassle to use? People will go elsewhere.
Ironically, as I was posting in a different thread, I found one more new problem with this stupid upgrade. I was trying to copy/paste the correct spelling of a word I found on line, as spell check didn't have it. For some reason, instead of putting in that word, it copied the last of my text! A whole paragraph that I had just double-spaced to make it a separate, new paragraph. AND, my lengthy reply there is now being moderated. I had started to copy/paste my long replies, so if they never showed up, I could just re-submit them. I should have done that. But I'm assuming it will show up soon.
New here as well, only 27 years old, and shingles in august 2018. Can't take lyrica cause I have to take care of my 1 year old daughter, so its amitriptylene and cbd which dont quite do it (plus the neverending barrage of side effects, monetary or otherwise). I did just get my hands on a topical cream which has gab, amitriptylene and lidocaine mixed together, which I did not know existed until very recently. Gabapentin without side effects, is something I didn't think I would get again, but the cream only lasts so long. Regardless, it's worth checking out for anyone if available. It's nice to be among people who understand this pain.
I have has PHN on chest and back for 2 years now. Has anyone found IFT helpful?
I have no idea what that is. Can you explain how you heard about it and why you think it may help?
How does IFT physiotherapy work?
Interferential current therapy is an effective therapy option used by many physiotherapy clinics to relieve pain and accelerate the self-healing process, getting your body back to a healthy, pain free state. The high frequency signals of an IFC penetrate through the skin into deeper lying muscle tissues.
Hello well i have seen here that not too many are in the same page of shingles and its aftermath! Its been more than a year that i got shingles on my scalp! Kept getting bouts like 3-4 month and now its more like PHN! I stopped taking anti virals and just take advil for the nerve pain!
Would like to know how many more months or years would i have to endure this pain?
Cold compressors help!
Myrna