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Author Topic: pain meds  (Read 6820 times)

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Offline mikeyb39

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  • Posts: 980
pain meds
« on: December 14, 2013, 01:58:46 am »
Does anyone feel guilty about asking your doctor for pain medication?  I have pain all the time in my feet and legs from the neuropathy, not horrible, but sometimes hurts pretty bad.

My doctor will usually write me a script for low dose codeine, but I always feel embarrassed to ask for it.  Should one be ashamed to ask for 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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline Bowie-esq

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  • Posts: 84
Re: pain meds
« Reply #1 on: December 14, 2013, 03:56:25 am »
There is no shame in asking, it shows that you are listening to your body and taking care of yourself.
Infected: +\-01/2010

Tested positive 08/2010
28/07/11 CD4 420 9% v.l. 20500
16/10/11 CD4 320 10% v.l. 185000
10/11/11 begin Truvada/Viramune
29/12/11 CD4 410 13% v.l. 115
14/4/12 v.l. undetectable
05/7/12 CD4 520 19% v.l. UD
21/08/13 CD4 470 20% v.l. UD
19/12/13 CD4 430 23% v.l. UD
8/12/14 CD4 600 21% v.l. UD
4/2/15 CD4 600 v.l. UD. Cholesterol 6.2 ....

Offline BT65

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Re: pain meds
« Reply #2 on: December 14, 2013, 06:08:05 am »
Shame is in our own heads.  I am actually in a pain management program, so I only have to call for refills on the pain med I take.

I am surprised your doctor has not suggested this to you if you are having such issues with neuropathy.  And I totally understand that pain, I've had it for years, progressively getting worse. 

You may want to ask your doctor for a referral to a pain management doctor.  That would be your best bet.  Then you won't necessarily have to continuously "ask" for more pain meds, you'll already be on a maintenance dose of pain meds.
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Offline intaglio

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Re: pain meds
« Reply #3 on: December 14, 2013, 07:31:30 am »
There is no shame in declaring a fact to your doc. Your neuropathy is a complication of your HIV. You have every right to live pain-free. It is in your best interest to inform your doc when health issues become quality-of-life issues.

My wife deals with neuropathy due to complications of diabetes. She uses neurontin to manage hers. She works with a neurologist to manage her nerve issues.

If your doc is not comfortable handling your pain issues, ask for a referral to a doc who can help you.
Reality is frequently inaccurate.

Offline mikeyb39

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  • Posts: 980
Re: pain meds
« Reply #4 on: December 14, 2013, 09:54:57 am »
Thanks all for the info
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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline Miss Philicia

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Re: pain meds
« Reply #5 on: December 14, 2013, 10:58:54 pm »
My only concern is when you crossed to codeine from other options, generally neurontin or lyrica. Can I assume you tried those both for a reasonable amount of time, upping the doses to see what worked, and that you did not move onto something stronger to quickly.

That's most doctor's concerns, including mine. Once you go on higher powered pain meds you are often on them to stay, and we all must consider that if we are in our 30's or 40's then that means, with current treatment, possibly being on pain medication for decades at possibly stronger and stronger doses. I've seen too many people go on multiple pain meds, and I will say from experience when you start having yet some other issue down the road it becomes more and more difficult to ascertain what is doing what when you layer more and more things in terms of prescriptions.

I still have a large amount of pain in my feet at all times -- a combination of neuropathic pain, sciatic pain and simply pain from having four tendons in two feet stretched to their maximum length. I've shown other people and my doctor -- yes shown, what the pain is like by taking one of their hands and squeezing it really hard, that's what it feels like -- and not just sometimes, it's 24/7, like a piece of furniture sitting on top of my feet or a vice grip squeezing on them. I sometimes think I should be on pain medication. I'm not afraid to ask for it, but I am afraid -- no trepidatious perhaps -- about adding another ingredient to my prescription stew.

Most of you don't know the entire story of my post-surgery dramas that weren't, in fact, related to my surgery recovery from three months ago. You know I had this severe back pain and went briefly on pain medication, actually five things were changed. Then a month later I had this heinous reaction to one of them and while it did eventually get sorted out there were two weekends where I was on the verge of going to the ER -- and when you live alone making that ER decision isn't as easy as with a partner. A partner assuredly would have forced me to go, but in the end it was sorted out and I'm fine now.

Sorry to ramble, it's just something to consider that's all. But no, you should not in principle have shame initiating such a discussion with your doctor. I guess, Mike, in your case I am concerned because there always seem to be residual dribs and drabs going on with you and this -- the neuropathy which was odd in your case as newly diagnosed as you were at that time, and your frequent threads about sleep issues which don't seem to get resolved to your satisfaction, and which I have the utmost empathy for because sleep deprivation effects other problems, and I am sure increases your pain issues. I guess my concern is that there's some holistic element lacking in your treatment as it seems your GP tries to address all of this and you just kind of limp along, or perhaps I am wrong with this opinion and lacking the information.
"I’ve slept with enough men to know that I’m not gay"

Offline marcmoral16

  • Member
  • Posts: 101
Re: pain meds
« Reply #6 on: December 15, 2013, 02:36:12 am »
I was too afraid to so for pills for my pain.

I have lower back pain
Sciatica left leg
Degenerative cartridge in my knees from playing catcher in baseball for 6 years

I was always afraid to ask didn't want to seem like a drug seeker. After talking with my Dr she was upset with me. You should never be afraid to say your in pain since you know your body best.
Tested Positive Jan 16 2013
CD4 119 6% VL 23980
Started Complera Feb 2013
March CD4 199 9% VL 1000
May CD4 255 12% VL 334
June CD4 284 15% VL 172
Switched to Stribild middle June 2013
July CD4 325 22% VL 51
October CD4 341 23% VL UD!!
Jan 2014 CD4 343 20% VL <20
July 2014 CD4 450 26% VL <20
December 2014 491 26% still UD!

Offline mikeyb39

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  • Posts: 980
Re: pain meds
« Reply #7 on: December 15, 2013, 11:22:25 am »
My only concern is when you crossed to codeine from other options, generally neurontin or lyrica. Can I assume you tried those both for a reasonable amount of time, upping the doses to see what worked, and that you did not move onto something stronger to quickly.

That's most doctor's concerns, including mine. Once you go on higher powered pain meds you are often on them to stay, and we all must consider that if we are in our 30's or 40's then that means, with current treatment, possibly being on pain medication for decades at possibly stronger and stronger doses. I've seen too many people go on multiple pain meds, and I will say from experience when you start having yet some other issue down the road it becomes more and more difficult to ascertain what is doing what when you layer more and more things in terms of prescriptions.

I still have a large amount of pain in my feet at all times -- a combination of neuropathic pain, sciatic pain and simply pain from having four tendons in two feet stretched to their maximum length. I've shown other people and my doctor -- yes shown, what the pain is like by taking one of their hands and squeezing it really hard, that's what it feels like -- and not just sometimes, it's 24/7, like a piece of furniture sitting on top of my feet or a vice grip squeezing on them. I sometimes think I should be on pain medication. I'm not afraid to ask for it, but I am afraid -- no trepidatious perhaps -- about adding another ingredient to my prescription stew.

Most of you don't know the entire story of my post-surgery dramas that weren't, in fact, related to my surgery recovery from three months ago. You know I had this severe back pain and went briefly on pain medication, actually five things were changed. Then a month later I had this heinous reaction to one of them and while it did eventually get sorted out there were two weekends where I was on the verge of going to the ER -- and when you live alone making that ER decision isn't as easy as with a partner. A partner assuredly would have forced me to go, but in the end it was sorted out and I'm fine now.

Sorry to ramble, it's just something to consider that's all. But no, you should not in principle have shame initiating such a discussion with your doctor. I guess, Mike, in your case I am concerned because there always seem to be residual dribs and drabs going on with you and this -- the neuropathy which was odd in your case as newly diagnosed as you were at that time, and your frequent threads about sleep issues which don't seem to get resolved to your satisfaction, and which I have the utmost empathy for because sleep deprivation effects other problems, and I am sure increases your pain issues. I guess my concern is that there's some holistic element lacking in your treatment as it seems your GP tries to address all of this and you just kind of limp along, or perhaps I am wrong with this opinion and lacking the information.

I understand what your saying.  I did try the Neurontin and Lyrica, but they didn't seem to do anything but i'm sure I didn't take them long enough probably, I think about 2 months.

My issue with those meds is that its something else I would have to be required to take everyday.  My Neuropathy isn't so bad all the time, there are several days it doesn't bother me much except the leg cramping and very painful calves.   I just take the pain medication when I feel I need it.  So I don't know, I guess I just like to have a back up when I need 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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline LiveWithIt

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  • Posts: 535
Re: pain meds
« Reply #8 on: December 15, 2013, 11:48:46 am »
Never be ashamed to ask for pain meds if you need them. 

Codeine is not even that strong and is sold without a prescription in Canada. 

Your doctor will know if you have a drug addiction problem, people with those problems will ask for more and more pills and have no shame. 

I have a herniated disk problem.  When I went to the ER because it got so bad they did a urine test to make sure I was not faking it.  Then I was given an injection of pain meds and a prescription to get filled so I had Vicodin at home. 

Also the Vicodin they give is usually combined with Tylenol, that way you can't abuse it or it can ruin your liver.  At first I got the 7.5 mg Vicodin/750 Ty(if I remember correctly)    Then later on I got the 5mg/500ty.  At my worst they just took the discomfort away but didn't help me move.  Eventually with physical therapy and time and rest I got better and only too the meds for a short time. 

At one point my doctor put a notice up that he was no longer giving pain med scrips.  I asked him about it and he said it was to discourage people who only came in for pain meds and abuse them, that if I needed them he could still write them. 
« Last Edit: December 15, 2013, 11:51:35 am by LiveWithIt »
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline Miss Philicia

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Re: pain meds
« Reply #9 on: December 15, 2013, 11:52:51 am »
Just my opinion, but I would have stuck with the Lyrica option -- you must take it daily, generally three times a day and stick with it for a while so it builds up in your body. If you were only taking it "as needed" then it's not going to do anything for you. And while I've read that 100mg x 3 doses daily is the highest one should go I've been told at my doctor's office that they have patients on higher doses with no issues. I'm only on 75mg x 3 daily right now and feel they should up mine.

To me your issue sounds different then what I view neuropathy as mine is constant, but like I said it's also mixed in with other crap so hard to say what is what, and Lyrica only takes the edge off and makes it bearable. When it comes to pain issues I'm not sure you can hope for "no pain" only "less pain". So there's an art to upping your pain threshold.

Then again, I can't feel what is going on in your body only you can. If it's something you can tolerate during the day but you feel is causing your insomnia issues then it's a toss up of whether to concentrate on a sleeping pill and forego daytime stuff.  Is your sleep any better or is that also just a sporadic issue?
« Last Edit: December 15, 2013, 11:55:21 am by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline mikeyb39

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  • Posts: 980
Re: pain meds
« Reply #10 on: December 15, 2013, 12:04:24 pm »
Just my opinion, but I would have stuck with the Lyrica option -- you must take it daily, generally three times a day and stick with it for a while so it builds up in your body. If you were only taking it "as needed" then it's not going to do anything for you. And while I've read that 100mg x 3 doses daily is the highest one should go I've been told at my doctor's office that they have patients on higher doses with no issues. I'm only on 75mg x 3 daily right now and feel they should up mine.

To me your issue sounds different then what I view neuropathy as mine is constant, but like I said it's also mixed in with other crap so hard to say what is what, and Lyrica only takes the edge off and makes it bearable. When it comes to pain issues I'm not sure you can hope for "no pain" only "less pain". So there's an art to upping your pain threshold.

Then again, I can't feel what is going on in your body only you can. If it's something you can tolerate during the day but you feel is causing your insomnia issues then it's a toss up of whether to concentrate on a sleeping pill and forego daytime stuff.  Is your sleep any better or is that also just a sporadic issue?

sleep is always an issue for me.  I don't get enough of it even if I take an ambien.  I still automatically wake up at 430/5am no matter what time I go to bed or what I take.  I did toss the ambien for a couple weeks and took some melatonin and it seems to help somewhat.  I would just like to be able to sleep for 8 hours.
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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline Miss Philicia

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Re: pain meds
« Reply #11 on: December 15, 2013, 12:49:13 pm »
sleep is always an issue for me.  I don't get enough of it even if I take an ambien.  I still automatically wake up at 430/5am no matter what time I go to bed or what I take.  I did toss the ambien for a couple weeks and took some melatonin and it seems to help somewhat.  I would just like to be able to sleep for 8 hours.

Discuss rozerem with your doctor -- it's newish, non-generic, and focuses on our body's natural circadian rhythms from what I've read. My doctor gave me a script for it but my insurance denied it, but I know Betty takes it and she's on Medicare Part D insurance like me but you know that's handled by 3rd party insurers so it's all different. Anyway worth a discussion and see if you can try it out.

http://www.rozerem.com/

I would also make sure you are being strict with plain sense sleeping habits -- turning overhead lights off 2-3 hours before bedtime, using dimmer switches or small desk lights, staying off your computer/tablet/smartphone before bedtime as the blue lighting from these doesn't help promote good sleep, nor does multi-tasking allow your brain to begin to calm down. Use your bedroom only for sleeping -- don't read or watch television in it. And no I'm not making this stuff up I went to a couple sleep specialists both a decade ago in NYC and one here in Philly.

My doctor for this is Ronald Kotler who wrote 365 Ways to Get a Good Night's Sleep.  Per the write-up: "Ronald L. Kotler, MD, DABSM (Philadelphia, PA), is the respiratory director at the Pennsylvania Hospital Sleep Disorders Center and is a member of the American Board of Sleep Medicine, the American Sleep Disorders Association, the American College of Physicians, and the American Thoracic Society." You might benefit from picking up this book -- he's even been on Oprah! -- plus used copies are really cheap on there.

The sleep disorder clinic here was founded back in the 1970's by Kotler and is one of the oldest in the US, if not the oldest. Have you considered getting a formal work up from someone in this specialty in your area? IIRC you live in the Dallas metro area, right? I'm sure there must be someone great there for this.
« Last Edit: December 15, 2013, 12:53:57 pm by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline wolfter

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Re: pain meds
« Reply #12 on: December 15, 2013, 01:24:27 pm »
Did you have sleep issues before switching to your current combo?  I was one of the unlucky few who suffered horrid insomnia while on Isentress.  Once I switched it out, I spent almost an entire week in bed. 

Now, I get plenty of rest and good sleep. 

Wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline LiveWithIt

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Re: pain meds
« Reply #13 on: December 15, 2013, 03:47:18 pm »
sleep is always an issue for me.  I don't get enough of it even if I take an ambien.  I still automatically wake up at 430/5am no matter what time I go to bed or what I take.  I did toss the ambien for a couple weeks and took some melatonin and it seems to help somewhat.  I would just like to be able to sleep for 8 hours.

Try taking Melatonin at night before sleep.  Depending on how many  mg size you get you can take several.  They are in the vitamin section.

I had problems getting to sleep on Prezista.  The problem was that I used to take it at night.  Then I swtiched to taking it in the morning and I don't have sleep issues any more. 
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline Miss Philicia

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Re: pain meds
« Reply #14 on: December 15, 2013, 05:18:10 pm »
fyi, Rozermem is only approved for insomnia (falling asleep) not staying asleep. IIRC Lunesta is superior for staying asleep. Again, this is why I recommend seeing a sleep specialist.

Ambien was initially approved only for short term, less than 2 weeks, use and for falling asleep. Then they came with an extended release for which was supposed to help stay asleep but since its a non-benzo class drug patients build a tolerance for it, hence why it's for short term or infrequent use.

I think Rozerem while effective rather immediately actually needs time to build up in your body for 2-4 weeks to become consistently effective. It's supposedly not addictive like Ambien is when used daily. Basically Rozerem treats the core problem of brain chemistry and sleep whereas Ambien is more like a band-aid.

Again, if you are having daily and not sporadic issues with sleep you would benefit from a proper sleep study so they can monitor the five different states of sleep. There are many more sleep disorders than what people write off as insomnia.

But hey, I'm just a guy on the internet...
« Last Edit: December 15, 2013, 05:22:06 pm by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

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Re: pain meds
« Reply #15 on: December 17, 2013, 03:00:50 pm »
I understand what your saying.  I did try the Neurontin and Lyrica, but they didn't seem to do anything but i'm sure I didn't take them long enough probably, I think about 2 months.

My issue with those meds is that its something else I would have to be required to take everyday.  My Neuropathy isn't so bad all the time, there are several days it doesn't bother me much except the leg cramping and very painful calves.   I just take the pain medication when I feel I need it.  So I don't know, I guess I just like to have a back up when I need it.

Ms P is correct, you have to take the Lyrica as prescribed, every dose.  I take 150 3 x a day and it makes the neuropathy tolerable.  But, I have issues with neuropathy every single day.  I've had it since the early 90's, it got worse through the years also because of out of control diabetes, and now I can hardly rest my right foot on the floor.  It feels like it's on a hot plate all the time.  Just a couple days ago, I was fixing my hair in the bathroom, and had to pick up my right foot, as it felt like it was on a campfire.

So, I take my Lyrica all the time, every dose, every day.  While it's another pill, it doesn't make a difference in that aspect.  If I want relief, i have to do what's recommended.  I take about 24 pills a day, plus an injection of Insulin every night, so another pill wouldn't make a difference to me.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline mikeyb39

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  • Posts: 980
Re: pain meds
« Reply #16 on: December 17, 2013, 11:00:21 pm »
Thanks Betty, sorry to hear about your issues.  My issues are pretty small compared to what you are dealing with.

Thanks for the info.
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
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

 


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