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Author Topic: DESPERATE  (Read 843 times)

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Offline Tonny2

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DESPERATE
« on: June 20, 2014, 04:45:18 PM »
Hi everyone

For those uf you who are dealing with neruphatic pain, dropped toes, I would like you to share what you do to deal with the pain, and unstable walking...I've tried every thing, fron antiseizures drugs, antideppesant meds even narcotics, and I don't get relive...I've been dealing with this situation for over 17 years and I'm fed up...I will appreciate your feedbacks....next option for me would be a gun (pistol) and the only pistol I hsve is my hair dryier (in sapanish is called pistol of air) heheh, it's just a joke...thank you guys for your help

Online Jeff G

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Re: DESPERATE
« Reply #1 on: June 20, 2014, 04:56:05 PM »
Im so sorry you are not getting any relief . You story is personal to me because I am dealing with the same thing and like you its been going on for over 20 years for me .

PN and nerve pain is the most frustrating chornic conditions living with HIV can result in .
There are few too many treatments and most only offer partial relief if any . I am on narcotics for my pain and it only helps control it and mostly allows me to sleep better at night .

Sadly I can't offer you much in the way of a sloution but you are not alone in dealing with this . Please don't blow dry your hair over this  ;) .
.


Offline Tonny2

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Re: DESPERATE
« Reply #2 on: June 20, 2014, 08:18:13 PM »
 8)Thanks Jeff, I promise, I'll not shoot myself with my hairdryer heheh...May I aske what narcotics are you taking, I'm allergic to the good stuff, oxicontin, oxicodone, methadone, atc, etc, the only thing I used was vicodin, but doesn't help anymore...next Thursday 26 I will see my Id doc and then a pain specialist who last time gave me some patches (butra or something like that) it didn't work and they wold make my skin itchy...next November I will celebrate my 20th anniversary with HIV/AIDS, and I started to have neurophaty pain two years after started treatment, hivid, videx, zerit, combivir, etc, etc...thx again for taking the time to write me, I appreciated  ;p

Online Jeff G

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Re: DESPERATE
« Reply #3 on: June 20, 2014, 08:30:25 PM »
8)Thanks Jeff, I promise, I'll not shoot myself with my hairdryer heheh...May I aske what narcotics are you taking, I'm allergic to the good stuff, oxicontin, oxicodone, methadone, atc, etc, the only thing I used was vicodin, but doesn't help anymore...next Thursday 26 I will see my Id doc and then a pain specialist who last time gave me some patches (butra or something like that) it didn't work and they wold make my skin itchy...next November I will celebrate my 20th anniversary with HIV/AIDS, and I started to have neurophaty pain two years after started treatment, hivid, videx, zerit, combivir, etc, etc...thx again for taking the time to write me, I appreciated  ;p

I take oxycontin . It works for the small nerve damage very well but does little for PN in my feet and legs ... hands . I also have nerve damage in my stomach and bladder .

I manage to cope most days with the PN but if not for the Oxycontin I would not be able to have any quality of life with small nerve damage . The bad thing is that it take pretty high doses of pain meds to be effective for neuropathy . Some doctors are reluctant to treat it with the doses it takes to mange the pain .

I have come to terms with the fact I will always suffer pain every day and that partial relief is the best to hope for .

Offline Tonny2

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  • Posts: 373
Re: DESPERATE
« Reply #4 on: June 20, 2014, 08:56:11 PM »
you are right, my doctor is reluctant to give me narcotics, but I'm determine to tell him that I need some quality of life, I'm going blind and I have nothing to lose anymore (CMV and cornea problems) so he has to help out...I'm allergic to oxicontin, get a rash, I took viocodin with northriptiline for almost seven years (only 4 viocodin HP a day) and it wuold help by snymore I stopped it three years ago, now I will see my pain specialist and see what happens...do you have dropped toe?...I do have the big toe in both feet and I get lots of pain and calloses ( forgive I don't know how to spell it) COMPRENDE?...and I walk like if I were drunk, do you?..thx Jeff

Online Jeff G

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Re: DESPERATE
« Reply #5 on: June 20, 2014, 09:07:38 PM »
I have some balance issues but no drop toe . I think you are wise to consult with a doctor who specializes in pain management, they are free to do what it takes to control your pain where a general practitioner has to be careful with how he or she treats pain patients because of how tightly controlled pain meds are these days . The people who abuse prescription drugs have made it harder and harder to get treatment for pain .

Offline Tonny2

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  • Posts: 373
Re: DESPERATE
« Reply #6 on: June 20, 2014, 09:30:36 PM »
you are right again, I have never abused prescription drugs, my doc gave viocodin told me to take 8 at day, I only took four, 2 and the morning and two around four...when I got vasculitis I went up to six a day but still did not help....the vasculitis pain is terrible, fortunally, I got rid of the vasculatis.....I'll let you know what the pain specialist (oncologist) tell me, maybe it can help us both...gracias otra vez Jeff

Offline mikeyb39

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Re: DESPERATE
« Reply #7 on: June 22, 2014, 10:57:26 AM »
I have small nerve damage as well, I'm not as much in pain as you are, but its pretty uncomfortable most of the time...sometime my left foot get very week and I have to wear a brace otherwise its very painful.

I was one of the unlucky newbies that got this, it was very bad in the beginning feet became numb and stinging, hands would become extremely red and painful to run water on them...temperature issue.

once my doctor changed my med, it got better but the small nerve damage was already done. I have good days and bad days with the feet, more bad than good

My doctor gives me Vicodin 7/325 twice a day, I sometime need more than 2 a day because not only do I have the neuropathy I also have degenerative discs in my lower back.. My doctor gives me the meds but it comes with a warning and makes me feel like I'm asking for morphine.

I'm seeing a pain specialist tomorrow actually to have them see if they can help out.  I do not want to take any high powered meds like oxy, I'm just not ready to go there right now
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mikeyb39

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  • Posts: 938
Re: DESPERATE
« Reply #8 on: June 22, 2014, 11:12:10 AM »
when mine was at its worse in the beginning I tried everything such as Lyrica, Neurontin, something else and they did nothing to help really. I could hardly wear shoes.

I found a compounding pharmacy in Colorado that made a gel that included Neurontin, Ketamine, Lidocaine and something else.  I had to have my doctor write a prescription for it and it was mailed to me.  I would rub it on my feet a few times a day and it calmed the pain so it wasn't so bad.  Insurance didn't cover it.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Tonny2

  • Member
  • Posts: 373
Re: DESPERATE
« Reply #9 on: June 22, 2014, 12:12:16 PM »
GRACIAS MICKEY
i TRIED EVERYTHING, EVEN THAT COMPOUND YOU MENTIONED, IT DISN'T HELP EITHER MAYBE BECAUSE I'VE BEEN DEALING WITH THIS FOR A LONG TIME...I DO HAVE TO WEAR A BRACE ON MY LEFT FOOT BECAUSE IT DOESN'T STAY STRAIGHT ANYMORE, IT MOVES TO THE RIGHT OR THE FRONT, PULLING ALL THE NERVES AND IT GETS SO PAINFUL....THE 26 I WILL SEE MY ID DOCTOR AND A PAIN MANAGMENT DOC, I WILL THEM THEM THAT I NEED QUALITY OF LIFE, THAT I'M FED UP LIVING LIKE THIS, SO IF THEY DON'T HELP ME I WILL LOOK FOR A DIFFERENT DOC, I MIGHT GO COMPLETLY BLIND SOON, SO I WANT TO ENJOY WHAT I HAVE LEFT OF MY EYESIGHT.
THANKS AGAIN JEFF AND MICKEY FOR SHARING, I WILL LET YOU GUYS KNOW WHAT THE PAIN DOC SAYS...HUGS  ;P

ps bear with me, English is my second language

Offline guitargal

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  • Posts: 53
Re: DESPERATE
« Reply #10 on: July 23, 2014, 04:51:25 PM »
the pain sucks..you are not alone..

finding the right treatment is not easy..
don't give up.. when i am pain free i am happy and not depressed and not crying. i can function..i can eat..

who can eat when in pain? i was down to 101 lbs  now with pain meds i am 110!

when i have pain it is bad..

i tried everything, because they did not want to give oxycodone.. cymbalta, lyrica,  did not help,

nortriptaline may help,  helped with my feet only..but it made me depressed..

and the only thing that helps me with the full body throbbing and stabbing waves of electric pain... is the oxycodone.

now if the doctors would understand that we have HIV and have taken all these toxic meds for 20+years and prescribe the proper dosage of pain meds, we can live some quality while we are here..

that is going to be my argument now if they give me a hard time..

I never had to take pain meds for 20 years, was doing really well..

 now i have severe pain and some docs have sent me home with nothing to help me..  label me as drug seeker…

best to you and finding the right doc and the right meds…


don't give up...



Offline Tonny2

  • Member
  • Posts: 373
Re: DESPERATE
« Reply #11 on: July 23, 2014, 05:41:01 PM »
the pain sucks..you are not alone..

finding the right treatment is not easy..


ojo   thanks for replying, I changed my appointment to the 5 of august, I'll let you know, what my doc says....you are right, some doctor thnk you are seeking for drugs, if they knew what it feel to live with pain, at least this kind of pain....I'm allergic to oxycodone, oxicontin almost everything, the only thing is helping a little is Vicodin, but itsn't enough, will see...don't worry, I never give up, just try to distrct my mind...thanks again...good luck for you too    ojo

 


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