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CTyankee

(63,912 posts)
Tue Dec 15, 2015, 06:51 PM Dec 2015

my diagnosis is now Postherpetic Neuralgia.

Even though the neurologist said they usually wait to label it that for 3 months of consistent pain after shingles and I am in the 6th week, he said he fears it is.

I'm still on the Percoset and on Galpantin (sp?) The pain is pretty mind numbing and I hope for this to just go away on its own. At some point I may have to get something stronger than Percoset. The problem is that all the drugs I am taking are causing memory issues which I wish I could resolve but I'll need my primary care doc (now on vacay til Dec. 28th) to help me sort out.

The good news is that the doc said dependency does NOT always follow taking strong painkillers such as Percoset. He said his wife took a fall and suffered a broken coccyic and was on Percoset for several months and when the pain was gone she felt no need to continue taking the drug. I told him that had been my experience in the past with pain meds after surgery.

So glad I have the community of DU around me. You guys have been wonderful and very supportive. It was surprisingly rough when DU was down...but I was being a big baby and now everything's up and back in good order.

Thanks to all here who have provided a very caring space for me and for others who suffer from pain, both physical and emotional. It's good to have such wonderful friends.

33 replies = new reply since forum marked as read
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my diagnosis is now Postherpetic Neuralgia. (Original Post) CTyankee Dec 2015 OP
May your pain go away like it should! Good luck going forward. shraby Dec 2015 #1
Ain't this getting old, already? CTyankee Dec 2015 #3
I came down w/the shingles before Thanksgiving CountAllVotes Dec 2015 #2
I'll try anything, that's for sure. CTyankee Dec 2015 #4
Were you on Percoset? Is there anyting stronger that docs consider prescribing? CTyankee Dec 2015 #5
Please check your mail. CountAllVotes Dec 2015 #7
I'd like to add my wish stage left Dec 2015 #6
bless you...you are a spirit of loving and caring...it is why I love this place...we bring CTyankee Dec 2015 #13
Aww stage left Dec 2015 #28
OW! I missed the beginning of this but whinge in sympathy. uppityperson Dec 2015 #8
I don't eat nuts and chocolate anyway so I guess I am safe from that! CTyankee Dec 2015 #14
My dad got it on his neck and barely noticed uppityperson Dec 2015 #18
OH GOLLY! elleng Dec 2015 #9
Yes, but it is good to have handy! Thanks, ellen... CTyankee Dec 2015 #19
I'm glad you're hopeful, yank. elleng Dec 2015 #21
gabapentin? mopinko Dec 2015 #10
yes, gabapentin...sorry my brain doesn't work right...I'm effed up on my understanding CTyankee Dec 2015 #17
Gabapentin (Neurontin) is specific to nerve pain. It's generic and pretty cheap. Warpy Dec 2015 #11
thanks, warpy. glad to hear from you since you have some good info... CTyankee Dec 2015 #15
Dependency is a snap to overcome, even with drugs that need to be tapered Warpy Dec 2015 #20
esp. since my last experience (about 10 years ago) with surgery recovery... CTyankee Dec 2015 #22
you want I should kick some Postherpetic Neuralgia ass, CTyankee? Skittles Dec 2015 #12
yes, INDEED, skittles...ANYTHING you can do much appreciated! Love ya! CTyankee Dec 2015 #16
Skittles is the best. Liberal Jesus Freak Dec 2015 #23
you want I should kick some Liberal Jesus Freak ass? Skittles Dec 2015 #24
AGAIN?!?! Liberal Jesus Freak Dec 2015 #25
Take care and heal up, CTyankee... villager Dec 2015 #26
i really want to be up to the new year coming up...I really do! CTyankee Dec 2015 #30
Positive pain free vibes to you. onecaliberal Dec 2015 #27
Good luck and courage with your pain management... Surya Gayatri Dec 2015 #29
thank god for pain meds... CTyankee Dec 2015 #31
I'm a believer in natural and homeopathic remedies when possible, Surya Gayatri Dec 2015 #32
STILL, no call from the neurologist re my continuing shingles pain...I have put in THREE CTyankee Dec 2015 #33

CTyankee

(63,912 posts)
3. Ain't this getting old, already?
Tue Dec 15, 2015, 06:59 PM
Dec 2015

Thanks, shraby. You've been one of my supporters all along. My thanks to all,like yourself, who contributed your story and helped me through these past few weeks.

CountAllVotes

(20,875 posts)
2. I came down w/the shingles before Thanksgiving
Tue Dec 15, 2015, 06:57 PM
Dec 2015

The pain has been horrible but seems to be letting up a bit being I was able to remove a major stress item from my life luckily.

This problem can go on for years or it can go away slowly which is where I am at.

Don't fear taking stronger medications for pain as your body needs the rest to heal from this horrible virus.

I hope you are feeling better soon!

Hang-in there!





CTyankee

(63,912 posts)
5. Were you on Percoset? Is there anyting stronger that docs consider prescribing?
Tue Dec 15, 2015, 07:02 PM
Dec 2015

It would also be nice to get something topically applied too.

CTyankee

(63,912 posts)
13. bless you...you are a spirit of loving and caring...it is why I love this place...we bring
Tue Dec 15, 2015, 08:34 PM
Dec 2015

together the nicest folks on the earth...

uppityperson

(115,677 posts)
8. OW! I missed the beginning of this but whinge in sympathy.
Tue Dec 15, 2015, 07:35 PM
Dec 2015

My shingles fortunately stopped fairly quickly, a couple weeks of bad. Percocet helped, did not need gabapentin though.

Dependency does not always follow using strong pain killers. You do what you have to do to get past this.

Avoid eating nuts and chocolate in any quantities as they have an amino acid which encourages herpes outbreaks. This isn't woo but actually known to occur, look up arginine/lysine for more info. One theory why chickenpox outbreaks occur Jan-April is that is the time of year when people eat arginine high foods, like that chocolate and nuts.

I hope you feel better soon, and don't have it ever come back as it can really be a pain.

CTyankee

(63,912 posts)
14. I don't eat nuts and chocolate anyway so I guess I am safe from that!
Tue Dec 15, 2015, 08:39 PM
Dec 2015

But thanks for the heads up. Hoping that this outbreak will not keep me from going to my dtr's for xmas but the drive itself might just be out of my capability...

My shingles was so severe (you can still see it on my chest and shoulder) that the docs just gasped "wow." That wasn't what I wanted to hear, obviously...

Again, you are a godsend and thank you. I appreciate your warm wishes...

uppityperson

(115,677 posts)
18. My dad got it on his neck and barely noticed
Tue Dec 15, 2015, 08:47 PM
Dec 2015

At first I thought I had kidney stones, then maybe appendicitis. After a day I connected the dots, so to speak, and realized it was both ends of the nerve, and made a quick trip to get some anti-virals. It still hurt, and I wore second or third hand xxl soft cotton pj shirts for a while as anything touching the sores or the nerve was too much. Eventually it usually goes away.

In the meantime, being in pain, being stressed, releases chemicals in your body that make healing more difficult. If you are a person who doesn't like to do medicine, or drugs, or painpills, being able to be more relaxed and even sleep better will let your body do its healing.

Yes, some people get addicted, but that is pretty darn rare if you are taking it for a thing like this. You need to do what you need to do, then heal up.

Isn't it fun being a "wow" sort of patient? Not.

CTyankee

(63,912 posts)
19. Yes, but it is good to have handy! Thanks, ellen...
Tue Dec 15, 2015, 08:50 PM
Dec 2015

Right now I feel better, like I can get through this and I am hopeful for tomorrow, but we'll see. Friends and neighbors (and DU!) have been so helpful! It wonderful...

CTyankee

(63,912 posts)
17. yes, gabapentin...sorry my brain doesn't work right...I'm effed up on my understanding
Tue Dec 15, 2015, 08:46 PM
Dec 2015

of this drug obviously. Oh, well, as long as I take it as prescribed and I have my two docs working together, all should be well...

Warpy

(111,270 posts)
11. Gabapentin (Neurontin) is specific to nerve pain. It's generic and pretty cheap.
Tue Dec 15, 2015, 08:02 PM
Dec 2015

It should be helping the Percocet along. I once needed to be on it around the clock for a few months and did get slightly dependent on it, resulting in a raging headache, minor flu like symptoms, and insomnia for 3 nights. I just ended a prescription and didn't want to refill it because I was sick of having that stuff in my head. If you have symptoms, you'll be allowed to taper down, stretching the amount of time between pills, then cutting the pills in half, then off completely. You should be symptom free with that. You can get dependent on strong painkillers but if you are taking them according to directions, you won't get that dependent.

If you're not getting adequate relief with that combination, ask about lidocaine patches. They can be cut to size and will completely numb the surperficial nerves that are causing so much pain.

The good news is that PHN generally resolves over time, meaning you'll likely taper your own painkillers down as you no longer need them.

CTyankee

(63,912 posts)
15. thanks, warpy. glad to hear from you since you have some good info...
Tue Dec 15, 2015, 08:42 PM
Dec 2015

I've never gotten dependent on painkillers so I have no reason to believe I will start now. My grown dtrs are giving me the razzmatazz about the dependency thing. I'm trying to straighten them out on that score. One dtr wants me to "think other thoughts" to get my mind off the pain...oy, how does one even TRY to explain that one...

Warpy

(111,270 posts)
20. Dependency is a snap to overcome, even with drugs that need to be tapered
Tue Dec 15, 2015, 08:55 PM
Dec 2015

Addiction is the hard one because of the cravings that never completely go away. They're totally different phenomena.

They followed 10,880 patients in Boston in the 80s who had strong narcotics in the hospital. There were four new addictions. FOUR. I think your odds are pretty damned good.

CTyankee

(63,912 posts)
22. esp. since my last experience (about 10 years ago) with surgery recovery...
Tue Dec 15, 2015, 09:30 PM
Dec 2015

it was fine. Maybe my doc just lowered the dosage as I got better but that's OK. I didn't need as much so I didn't get it.

Skittles

(153,169 posts)
12. you want I should kick some Postherpetic Neuralgia ass, CTyankee?
Tue Dec 15, 2015, 08:09 PM
Dec 2015

I WILL MAKE YOU REMEMBER; yes INDEED

Liberal Jesus Freak

(1,451 posts)
23. Skittles is the best.
Tue Dec 15, 2015, 09:56 PM
Dec 2015

An ass-kicking from Skittles cures everything. Hugs and best wishes for healing (I'm not a very good ass-kicker Maybe Skittles should give lessons)

CTyankee

(63,912 posts)
30. i really want to be up to the new year coming up...I really do!
Wed Dec 16, 2015, 01:39 PM
Dec 2015

but there's not much in the way of hope at this point. I keep waiting for it to fade away but in the meantime I've got DU and a supportive circle of family and friends. I'm thankful that the weather is good...no snow, yay!...but a neighbor picked up a 40 lb. bag of snow melter for us to keep on hand (and before the stores get sold out of it, which is what kept happening last year)...

 

Surya Gayatri

(15,445 posts)
29. Good luck and courage with your pain management...
Wed Dec 16, 2015, 01:11 PM
Dec 2015

I've been on (for me) some pretty industrial strength pain meds since I broke my hip. During the day, I try to ignore the ache, but often need help to sleep.

Tramadol and Doliprane 1000 help me make it through the night.

 

Surya Gayatri

(15,445 posts)
32. I'm a believer in natural and homeopathic remedies when possible,
Wed Dec 16, 2015, 01:46 PM
Dec 2015

but when the BIG PAIN hits, as you say, thank god for the heavy duty chemicals. New molecules are a gift from the Universe.

CTyankee

(63,912 posts)
33. STILL, no call from the neurologist re my continuing shingles pain...I have put in THREE
Tue Dec 22, 2015, 06:52 PM
Dec 2015

and have pleaded with them to call me back. It has been a WEEK and I am at the end of my rope with this pain.

Even if just to refer me to a doc who will inject me with a nerve block (if he won't). Or to email in a lidocaine patch to my pharmacy for intermediary relief. Or mail to me if that isn't allowed.

My pcp who referred me to the neuro guy is still on vacation. If this is still going on when he gets back next week I'll make a huge stink about his colleague's attitude toward my three pleas for help in the constant pain that I am in. This neuro only seemed to want to give me a bunch of pills I was already taking and that weren't doing the job adequately. Thank goddess for the internet for clueing me into the info about the lidocaine patch and the nerve block.

OK, that's my rant. I guess I am lucky with so many caring friends who are pitching in with food and doing shopping. Hubby can do small runs but I have been HIS caregiver and he's resenting a bit having the roles reversed. I understand it but it can make for some hard feelings at times...

end of rant. thanks for listening...


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