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Author Topic: yet another pain in this old body...questions  (Read 3040 times)

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Offline buca45

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yet another pain in this old body...questions
« on: August 22, 2007, 10:25:55 AM »
hi all!! i have been lurking for a while now and thought id start a new thread for your help in diagnosing my newest pain and how to deal with it.
first a bit of background:
Poz for 15 years now and haven't been able to get cds over 400 regardless of several different combos. I'm currently on Prevista, Epzicom and Norvir. Also take Pravastatin, Hydro codone, Xanax and a OTC GNC men's multivitamin (the new green ones with veg supplements)
So here's the thing....I have one heck of a time getting moving in the morning. when i wake up, my whole body hurts and it takes a few minutes to get up and get moving. My usual routine is to go pee, take my hydro codone and lay back down for an hour or so and the pain disappears. Although it is still there for most of the day, it is bearable and the hydro codone seems to take away most, but not all pain. I tell you, everything hurts upon waking!!
Well, my doc is real good about listening to me and will do whatever he can to make me more comfortable and i have a good relationship with him.
Over the past few months, I have been noticing my feet and hands feel like they have gone to sleep and feel like pins and needles most of the time. lately, my right hand is getting very painful especially around my joints. After I told the doc about this, he prescribed lyrica. Ive been on this now for a month, but if anything, the pain seems to be getting worse. Its so bad at night that i cant grasp anything.
In reading info about his med, it doesn't seem to be for neuropathy (if that's what this is) but rather for shingles??? if in fact I do have neuropathy, is there any other meds that you all might have  tried with some success? I know from what I've read that this is a common thing due to the meds and i can accept that, but just looking for something that does a better job in helping to deal with this.
Also, are there any better anti pain meds that you could recommend for the crappy aches and pains i have in the morning? as i said, the hydro codone works OK but i also have alot of itching everywhere for a few hours after i take it.
any suggestions would be appreciated and if you have any questions about my symptoms, please ask.
I have a doc appt on Monday so would like to give him some suggestions on what i might be able to try next for the pains I'm having. It gets so bad at times that it just adds to my anxiety.
Thanks alot to all here....reading the posts gives me some comfort making me realize I'm not alone in dealing with all of this. I have a great companion of 10 years who is negative and is good to talk to, but i feel unless you actually are experiencing all this "wonderful disease" entails, its hard to understand why i sometimes don't even feel like talking about it. I give my partner so much credit for dealing with all of this for so long as i don't think i would be able to!!
Thanks again guys, you are a big help to be just being here!!
"Love and Laughter and Happiness Ever After"

Offline buca45

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Re: yet another pain in this old body...questions
« Reply #1 on: August 23, 2007, 10:17:46 AM »
Hello again!!
I didn't receive any response which prompted me to do some research on my own (I guess something i should have done to begin with) and got a good idea of what i need to speak to my doc about on my visit on Monday.
I don't mean to be disrespectful here, but is it normal to have a newbie "waiting time" to be accepted in this community? I have been to a few other sites and chat rooms and until you get yourself a reputation (good or bad) it seems you may be ignored for a while.
Just wanted to let you all know, I am a genuinely nice person, very laid back and somewhat intelligent with a lot to contribute or if/when needed, I am really a nice and considerate person to chat with.
I did notice on reading through other threads that there is somewhat of a "well, I don't know you and you have no previous posts, so I'm not speaking to you". I hope this isn't the case here and that everyone is acknowledged and there isn't the 'clique' scene that so many other sites have established for themselves.
Again, what I just stated is not done out of disrespect, I just want to fit in and speak with others in the same boat. I rarely get out and have no other HIV poz friends to talk to about general things we all face at one time or other.
So, please don't be afraid to approach me, i don't bite...well, unless you want me to........
"Love and Laughter and Happiness Ever After"

Offline Ann

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Re: yet another pain in this old body...questions
« Reply #2 on: August 23, 2007, 02:42:23 PM »
Hey Buca,

Sorry you didn't get any responses. It may have something to do with the forum you posted in, so I'll move it over to Living With for you. Living With is a busier forum so hopefully you'll get more responses there.

Although I'm not on any hiv meds and can't really comment on those, I do take codeine myself. I wonder if your pain in the morning might be partly down to an increase of tolerance to the codeine? What you're experiencing may partly be withdrawal symptoms.

I take regular breaks from the codeine to keep my tolerance level on an even par. The first day of a break can be uncomfortable - aside from feeling the pain that I take it for in the first place.

Oh, and welcome to the forum. :)

Ann


PS - You may also find you get more responses if you break what you write up into smaller paragraphs with breaks in between. It can be hard on the eyes to try to read big blocks of print on a computer screen - and if people have a hard time reading, they're less likely to respond. ;)

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Offline Robert

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Re: yet another pain in this old body...questions
« Reply #3 on: August 23, 2007, 03:29:13 PM »
HI Buca

I didn't read your post until this morning.  When it comes to PN, I really don't know of any medicine that helps.  My Dr. prescribed Nortriptylene and I took it faithfully every night for 3 years.  Then I realized it wasn't doing anything; that it was just another pill in the long list of pills I was taking so I quit.  I still have the PN.  As far as I can tell, when it comes to PN, all you can do is grin and bear it.

robertr
..........

Offline bear60

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Re: yet another pain in this old body...questions
« Reply #4 on: August 23, 2007, 03:38:07 PM »
Hi
Well, I too cannot comment on your pain issues.  But I can say HI!
Poz Bear Type in Philadelphia

Offline LatinAlexander

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  • Bogota, Colombia
Re: yet another pain in this old body...questions
« Reply #5 on: August 23, 2007, 04:15:36 PM »
PN: Doctor gave me codeine as well. However, for me that did not work at all. I had to take a break from my meds, ceause I couldn't bear the pain. I still feel the pain in the morning tough, and most of the day.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Jena

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Re: yet another pain in this old body...questions
« Reply #6 on: August 23, 2007, 04:38:34 PM »
Welcome Buca!
 I too cant give you any advice about pain meds because I'm allergic to everything it seems   :( But I did want to welcome you to the Forums  and to invite you to ask any questions you might have. Theres no "waiting period" to belong here, we're all in the same boat and are happy you found this place but still sad you had to join us. I hope you find  some answers from your doctor on Monday.

Jena

Offline buca45

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Re: yet another pain in this old body...questions
« Reply #7 on: August 23, 2007, 04:39:22 PM »
I suppose I will just butch it up and live with the pain!!
The hydrocodone does get me up and out of bed in the morning, but near the end of the day, its feet up and nothing strenous for me.
All in all, I cant complain about much....I have other positive things going on for me.
and hello back to all, was begining to get a complex from not being noticed for a whole day!!!!!!!
"Love and Laughter and Happiness Ever After"

Offline Lisa

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Re: yet another pain in this old body...questions
« Reply #8 on: August 23, 2007, 05:22:01 PM »
Has anyone tried giving you Gabapentin(Neurontin)? It is commonly used for neuropathic pain. Another one in use is Zonegran. The Zonegran is touted as having fewer side effects than Neurontin.

No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Oceanbeach

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Re: yet another pain in this old body...questions
« Reply #9 on: August 23, 2007, 05:34:52 PM »
Hey Buca,

Sorry, I didn't see your thread earlier.  I tend to haunt "Living With HIV", "Off Topic" and "Forum Gatherings".  Welcome to the forums  ;D.  I have been suffering from PN for several years to the point where every step was in total agony.  The only medication we have in common is Epzicom and I believe it was a contributing factor to my PN.  I have been off of that one for years.  My ID doc says healing is slow for PN.  My meds were changed to Trizivir and Sustiva a couple of years ago, the pain is slowly going away and I do not fall on my face on sidewalks as much as in the past.

I spent 4 of my 11 years of AIDS in a small California town.  At that clinic, they were clueless about PN.  I had gone through many walks down the hall with PN's, RN's, LVN's and several MD's.  They referred to it as my "gait".  One month, I was sentenced to an EKG, an MRI, and 30 days of Physical Therapy, at a cost of $12,000.00. All the tests showed nothing realting to PN as they knew it so I had them review my case files from the clinic in Los Angeles with emphasis on the page containing the EKG, which was clear I had been treated for PN in L.A..  This made it imperative to find a new medical provider, which I did when I moved to Sonoma County.  When told of my condition... I also have "foot drop" and was tearing up a pair of shoes each month... The doctor, recommended I purchase my shoes at Big 5 Sporting Goods because a customer can purchase seconds for only $5.00.  In physical; therapy, they also were clueless and dropped me as a client/patient because there was nothing they could do.  It was noticed that when I wear 5 lb weights on each ankle, I pick up my feet when walking.

Now, after all these walks down the hall with everyone (and their dogs), I have quality care as I did in L.A. and our focus is on the relief of PN.  That same clinic also diagnosed "poor circulation" as the reason for Restless Leg Syndrome and prescribed Vioxx for that pain (1 month before that product was pulled off the market).  It was members of these forums who pointed out the RLS and treatment options.  Many thanks to Jan (AnnieBC) and Gerry for that call, I had something to take to Doctor for discussion and Requip (which I rarely use any more) as that problem is going away too.  Have the best day
Michael

Offline buca45

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Re: yet another pain in this old body...questions
« Reply #10 on: August 23, 2007, 05:38:53 PM »
Thanks for your replies Lisa and Sonoma! I now am armed with a bit more info to take in to my doc on monday......
"Love and Laughter and Happiness Ever After"

Offline BT65

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Re: yet another pain in this old body...questions
« Reply #11 on: August 23, 2007, 06:00:59 PM »
Hey Bucca:
   I've had PN for years in my feet and am now getting it in my hands.  The pain is exactly as you described-tingling, burning and a feeling of being asleep.  I've been on Neurontin (one of the meds Jena mentioned).  It seems to help.  The itching you're having is probably from the Vicodin, as some people I know who take it experience the same thing and I did when I was using it. 

Hope everything goes alright with your doctor.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline BT65

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Re: yet another pain in this old body...questions
« Reply #12 on: August 23, 2007, 06:01:43 PM »
Edited:  I mean one of the meds Weasel mentioned, sorry.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline pozattitude

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Re: yet another pain in this old body...questions
« Reply #13 on: August 23, 2007, 10:25:32 PM »
Hey Buca,

I have PN and my doc gave me Cymbalta which is also an anti depressant.  It does seem to help with the tingling and numbing of the arms, put not much for the pain I am afraid.

Rich

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline tinydaniell

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Re: yet another pain in this old body...questions
« Reply #14 on: August 24, 2007, 02:03:01 AM »
and there is also lyrica that is created for pn and worked well with my neropathy


Offline buca45

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Re: yet another pain in this old body...questions
« Reply #15 on: August 24, 2007, 09:38:11 AM »
thanks again to those of you who took the time to respond to my request for any valuable info regarding PN.
Daniel, I guess I will try Lyrica for a bit longer. I've been on it for over a month now, so maybe i am not giving it enough of a chance to help with my condition.
Doc G will be happy that I took the time to do a bit of research on this topic. I feel a bit more empowered now for my visit on Monday!!
"Love and Laughter and Happiness Ever After"

Offline allopathicholistic

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Re: yet another pain in this old body...questions
« Reply #16 on: August 24, 2007, 10:38:19 AM »
if in fact I do have neuropathy, is there any other meds that you all might have  tried with some success? I know from what I've read that this is a common thing due to the meds and i can accept that, but just looking for something that does a better job in helping to deal with this.

First, I hope you don't have pn. I came across something about a pos man who has had pn for 7 years but is now finding relief with an interesting therapy http://www.poz.com/articles/1986_11687.shtml ... I hope the article is an interesting read for you. Best wishes, AH

Offline buca45

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Re: yet another pain in this old body...questions
« Reply #17 on: August 28, 2007, 10:25:51 AM »
Thank you allopath, that was an interesting article and something i will look into further.
The doc visit was very positive yesterday. Once again, I am undetectable and CDs are now at 255. I have come to expect such numbers regarding my tcells as they just have almost never gotten above 400 in 15 years. My doc remains not so concerned with that but is more focused on remaining undetectable and in an acceptable pain free state.
What he suggested now is to triple the Lyrica dosage, and has strengthened my hydrocodone script. After this script is done, he wants to try other meds to manage the daily pains. He too believes that by going on a pain med 'merrygoround' by changing the meds every three months now to avoid having my body become 'immune' to each type of pain killer.
Again, my thanks for all who made suggestions and offered welcomes! It is great to be here and posting.
"Love and Laughter and Happiness Ever After"

 


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