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Author Topic: PN: didn't want to hijack other thred!  (Read 1842 times)

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Offline tigger2376

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  • Posts: 462
  • too bad to die youngish!
PN: didn't want to hijack other thred!
« on: July 06, 2007, 09:55:42 PM »
Am getting hideous shooting pains up/down arms and legs. Been taking very effective anti inflammatories to date but they've stopped working, ideas? please? Cant sleep or walk more than about 50m. Am seeing consultant this week...maybe stress?
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Miss Philicia

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Re: PN: didn't want to hijack other thred!
« Reply #1 on: July 06, 2007, 10:08:09 PM »
I take 900 mg of Neurontin twice/day when it's acting up, less on better days.
"Iíve slept with enough men to know that Iím not gay"

Offline tigger2376

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  • too bad to die youngish!
Re: PN: didn't want to hijack other thred!
« Reply #2 on: July 06, 2007, 10:14:06 PM »
same here, its not working any more! Added to that are my meds and 120mg of dihydrcodeine each day to kill pain...and 500mg codydramol for when it gets too bad! I know I'm hooked on painkillers, so they work less and less but at the moment I just feel like shooting myself...its OBSCENE amounts of pain
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline paolo10954

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Re: PN: didn't want to hijack other thred!
« Reply #3 on: July 06, 2007, 10:16:00 PM »
I hope your ID doctor has you seeing a Neurologist or a Pain Management Physician who has the qualification to help you with PN. Like you, a lot of patients no longer respond to anti-inflammatory drugs, NSAIDS, COX-2 inhibitors esp. after either prolonged use or advanced PN. There are postherpetic drugs, anti-seizure meds or those used for diabetic PN that Neurologists prescribe such as Neurontin and Lyrica that have given relief to a lot of patients.


Good luck.

Paolo


jun03     hiv negative
dec03     tested positive
mar05     cd4 698  vl 23221 no meds
jul05       cd4 660  vl 2962 no meds
dec05     cd4 553  vl 5412 no meds
mar06     cd4 610  vl 3158 no meds
june06    cd4 523  vl 3924 no meds
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march07  cd4 536  vl 1331 no meds
june07    cd4 486  vl   820 no meds
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april09    cd4 428  vl  1059 no meds
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jan10      cd4 380  vl  1200 no meds
mar10     cd4 262  vl  2389 no meds
april28, 2010 started on Isentress and Truvada
july10     cd4 340  vl undetectable
nov10     cd4 431  vl undetectable
march11  cd4 350  vl undetectable

Offline Miss Philicia

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Re: PN: didn't want to hijack other thred!
« Reply #4 on: July 06, 2007, 10:18:34 PM »
That sucks... really.  And if you're in extreme pain screw worrying about pain killer addiction.  I hope your doctor can find you something better.
"Iíve slept with enough men to know that Iím not gay"

Offline milker

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Re: PN: didn't want to hijack other thred!
« Reply #5 on: July 06, 2007, 11:26:44 PM »
I don't know what you're feeling but it sounds awful, i'm sorry :( Like philly said, fuck addiction, take whatever can make you walk properly, sleep properly and not suffer.

I'm sending you hugz, that's all I can do :(

{{{{{{{{ HUGZ }}}}}}}}

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
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oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
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Now accepting applications from blowjob ninjasô

Offline Lisa

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Re: PN: didn't want to hijack other thred!
« Reply #6 on: July 07, 2007, 01:33:54 AM »
Neuropathic pain cannot be quantified, or qualified by any known means of testing. It is quantified by patient report, and IF you have been followed by a reasonable physician, he/she will recognize this as a new onset of a different pain process.
I hope you will be afforded testing that will quantify your needs.
I can think of no other pain to compare it to.
Godspeed your endeavor, as I would be screaming to the rafters. Addiction be damned. You go girl.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Miss Philicia

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Re: PN: didn't want to hijack other thred!
« Reply #7 on: July 07, 2007, 09:56:19 AM »
Neuropathic pain cannot be quantified, or qualified by any known means of testing.

Yep!  It's yet another one of those things one must be VERY insistent about with your doctor.
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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  • 29 years positive, 56 years a pain in the butt
Re: PN: didn't want to hijack other thred!
« Reply #8 on: July 07, 2007, 01:12:10 PM »
Tig, honey, I'm sorry this is happening to you..

My PN seems worse on some days than on others. I get the shooting pains, the general ache from the knees down and the feeling of walking on shards of red-hot glass.

I hope you can get yours under control. As Philly said, be VERY insistent with the doc and don't take any mealy mouthed worries about addiction from him/her.

(((((((BIG HUGS)))))))

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline david25luvit

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  • Member since March 2005
Re: PN: didn't want to hijack other thred!
« Reply #9 on: July 09, 2007, 02:02:57 AM »
I'm with Lisa...damn the addiction...........the quality of life is much more important
After three years I'm fairly certain I'm addicted but at least I'm relatively pain free.
Go Girl........Get you some pills
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline tigger2376

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  • Posts: 462
  • too bad to die youngish!
Re: PN: didn't want to hijack other thred!
« Reply #10 on: July 09, 2007, 08:42:09 PM »
Thankyou all for support. Was in full on rant mode friday because no amounts of neurontin/df118s/codydramol or combinations thereof were working. Saw GP today who gave me morphine 'stickers' again for when it all gets too horrific. (I'm VERY wary of these because its a glass ampoule with a basic needle to put straight into your thigh/butt...this is one addiction I DONT want). Its a combination evidently of my arthritis AND PN so when I see my ID doc next tues will see if numbers have blipped again because it could just possibly be my meds arent working as they should do. Am at least walking today....but VERY oddly, like a drunk, because I either have numb bits or it hurts! Heigh ho....whinge over, but am going to really make the point next week that this cant go on. I'm normally very stoic, but this is too bloody much  :)
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Matty the Damned

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Re: PN: didn't want to hijack other thred!
« Reply #11 on: July 09, 2007, 08:57:02 PM »
Tigs,

Don't fret too much about the morphine. When it's used under strict medical supervision for pain relief the chances of developing an opioid/opiate addiction is really quite remote. Don't try and be spartan and live with unbearable pain just because you're worried about addiction issues.

You don't have to suffer. :-*

MtD

Offline Jeffreyj

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Re: PN: didn't want to hijack other thred!
« Reply #12 on: July 10, 2007, 02:45:59 AM »
I have had the same exact pain! I was dignosed with PN in 2000, and it has gotten progressively worse. I have been on morphine(pill form) and see a pain management specialist fortthe past 4 years. I see them each month, so it is, like Matty says, carefully regulated. It beats being in constant f888F#$ing pain all the time.

most recently though, The pain has gone to my wrists, fingers and started shooting up both arms. I wanted to scream. I was sent to an arthritis specialist. After bloodwork, and two office visits, I was diagnosed with fibromyalgia. I would definitely,y ask about it. I was never so relieved to have a diagnosis! At least now there was a name to put to this excruciating pain I was having. I truly was about to go nuts. I am due for an MRI soon, and a few other tests .

Good luck. Stay aggressive though, if you don't get an an answer. I empathize with you and the pain you are having.

I got a shot of cortisone in my arse last week, and it took the edge of. It's beginning to wear off. Oh well, all good things....

Best of Luck!

Jeffrey j
Positive since 1985

Offline Dragonette

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Re: PN: didn't want to hijack other thred!
« Reply #13 on: July 10, 2007, 01:26:46 PM »
i didn't reply b4, b/c of my arm & also b/c this scares me so much. i have some degree of PN and once in a while i wake up from a sharp short pain, but nothing like you describe. my heart goes out to you. today i got stung by a jellyfish, man that hurts, it is like a throbbing burning repeated stabbing. but i know it will go away soon. it made me think again of your post and i wanted to write something, i wish i had some advice. just know that someone is thinking and feeling for you. hugs & get well wishes,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

 


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