First time poster, Chronic Pain Sufferer, HIV+ Since birth (27years)

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rispeed
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/10/2009 3:11 PM (GMT -7)   
Hello Everyone! This is my first post here so I will introduce myself. My name is Ryan, I have had HIV for 27 years. I got it from a blood transfusion when I was 1 day old.

The reason for the transfusion: i was a twin, born 6 weeks early. Apparantly my blood counts were a little low and they decided to give me a transfusion . Not exactly sure everything around that... but we found out i was HIV+ when i was in 7th grade, the guy who donated blood to me in 1981 tried to donate blood again in 1992 ... he tested HIV+ in 1992, so they checked his record and saw he had given me blood in 1981, so the hospital called and me and my whole family went in for blood tests. I didnt know what the tests were , one day when i came home from school my mom just said we gotta goto the hospital for some tests..... i didnt have any clue what was going on... then the next day we all went back to the hospital and they told me i had HIV.. It's been a roller coaster ride ever since but im dealing, and doing pretty well.. I work alot, I've been working as an auto technician full time since i was 16, and now i run my own repair shop So im on my legs all day and work very hard...



*** now on to the pain issues :)



about 5 years ago i started having bad pain in my legs, It was diagnosed as neuropothy from all the aids meds ive been on for many many years. I would take percosettes when the pain got really intense, other than that i would just deal with it, so i took percosettes maybe 1 - 3 times a week and they would work alright.

Then about a year ago the pain really was increased, it was right after i started a new regimin of HIV Medications, its really my last resort too, because i have resistance to just about all the Anti - Viral drugs out there.... SO about a year ago i started taking the percosetts daily, i started taking 10mg 2 - 4x a day and it was working okay. To make a long story short, over the last year my doctor has just increased my pain meds because obviously they stop working..... So right now i am taking 400-500mg of oxy per day and it doesnt do crap to help the pain, so i need to get off it. I had no idea what i was getting myself into taking these drugs, i had no clue how hard it would be to get off them, how dangerous they are etc.



These drugs are the devil and i want to get off them as soon as possible! It is so frustrating to me to be in SO much pain, and take such a high ammount of medicine and get no relief, on top of it, if i dont take any after like 6-8hrs i feel withdrawal (i think its withdrawal, after that time if i dont take anything my legs get very very restless and sore much more than the soreness from my chronic pain) I had no clue what i was getting into when my doctor started me on these pills... So now i just want to get off them completly and find something else...


What would be some reccomendations for getting off a 400-500mg a day oxycodone regimin?



Right now i am taking 80mg OCs twice a day

and 30mg oxyIR for pain throughout the day / night. Which i take 3 at a time every 5-6 hrs



To be perfectly honest i get Zero relief from these now, i take 90mg and i forget i even take them it doesnt even take the edge off any more. so i realized that i just defineatly need to get off them, I am scared of overdosing, scared of withdrawals, scared of the pain, just really sucks and i need some help.



Someone please help me sorry for the long post i finally decided to reach out and get some help with this..

Is it a good idea to go from 400mg to 160 in a day? I could stop the IRs completely and just take my 2 80s?



Thanks for the help. I am very frustrated with this .





RYan

Post Edited (rispeed) : 8/23/2009 12:09:28 AM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/10/2009 4:14 PM (GMT -7)   
Dear Ryan,
First, let me welcome you to the Chronic Pain forum of Healing Well. And second let me add how sorry I am to read your story. To have been battling such an illness from such a young age and yet successfully be running your own business is admirable to say the least.

As far as decreasing the pain medications, my first question would be are you seeing a Pain Management specialist to help with your pain? If not, you should be because there are many other options. But you are on a lot of oxycodone (not sure if some of it is oxycontin), and I would strongly advise you not to try to withdraw on your own, or through advice from this or any forum. We're a great support group, but aren't doctors, and withdrawing can be dangerous, even more so with multiple health problems. So I would say you need to be working with a good pain management doctor and if you're not satisfied with the one you have, I'd look for another. A teaching hospital that specializes in treating HIV related pain may be a good choice. But I would not suggest reducing the medication on your own. Have you talked with your doctor about it?

I'm glad you joined us, and decided to reach out for help.

Again, welcome.

PaLady

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/10/2009 4:17 PM (GMT -7)   
Welcome to the Healing Well forum.  We are glad you found us.  I suffer from neuropathic pain too.  Neuropathic pain is a strange beast and it does not behave like all of the other pain syndromes.  My first Pain Management doctor did not understand neuropathic pain and ended up prescribing fentanyl patches for it.  When they failled to control the pain, his answer was to up the dose.  And then up the dose again.....and then up the dose again.  In the end, I was on huge doses of fentanyl patches and my pain was still not controlled.  Like you, I became dependant on them, they were very expensive,  cause all kinds on new problems........and I was still in pain.  I found a a new PM specialist.  It was then that I had a better understanding of what neuropathic pain was...this PM took me off all of those patches (slowly) and prescribed Cymbalta and a small amount of morphine.  That combination made all the difference in the world for me.  The Cymbalta helped with the neuropathic pain and the low dose of morphine helped with my achy joints and all over muscle pain.  I learned from the 2nd PM that in many cases more narcotics are not always the answer. My first PM doctor had me on  high of doses of medications that did not even target my primary problem - neuropathic pain.  If you are not happy with your pain program and progress, it may be  time for you to seek a  second opinion. 
 
Good luck.  .....................................................................................................................................................................................

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 7/10/2009 4:26 PM (GMT -7)   
I kinda think they call all back pain as neuropathic pain, Mine comes from a Car Accident..
There are lots of good folks here and I wanted to says Hello..sure wish it was
under better circumstances, I've never been on that high amount of pain medicines,
but I think you should come off it with a doctors help, like PALady mentioned...
I wish you luck in what you choose to do, but hope you'll think over all advise very
carefully...
lots and lots of soft hugz
((((((((((((((((((((((((((((((((((Ryan))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/10/2009 6:11 PM (GMT -7)   
Hi Ryan,

Welcome to HW! I too am sorry to hear your story, but we're happy to have you here. I'd agree with what has already been said. Please, do NOT try to withdraw alone. You can get very serious withdrawl symptoms if you do not follow a detailed taper schedule. The best thing to do would be to talk the the doctor that prescribes the medication, explain your circumstance, and ask to be taken off the medication. Your doctor can then direct you on how to safely come off your meds & how to minimize withdrawl symptoms, or he may even give you something to help with them. It's great to have other people to talk to & to learn from, but when it comes down to it, the medical professionals are best advice givers & truly the only ones you should listen to!

Best of luck with whatever you decide! Keep posting with us & let us know how things are going. This is a really great caring, compassionate group. It's so nice not to feel so alone!

Skeye

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 7/10/2009 10:39 PM (GMT -7)   
That's an absolutely massive dose of drugs and I agree with everyone that you definitely need a doctor involved to reduce it safely. If I were in your circumstance, I'd probably talk to my doctor about using Suboxone to step down. I rarely ever bring up Suboxone, because it's getting thrown around so much as an "easy escape hatch" from narcotics these days, when it's really not.. but, with such high doses of oxycodone, you're facing a very long and tedious withdrawal, so it might be a reasonable option. :-)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/11/2009 9:40 AM (GMT -7)   
 
 
   Dear Ryan,
 
     Good Morning *huggs* My name is Dani. It is very nice to  meet you. I am new here too. I really enjoy myself here and I think yo will too. So many resources and people from all walks of life.... *whistful sigh*
 
     I am so very sorry you are running out of cocktail options. The most infulential person/s in my upbringing both had HIV. And, like you, for reasons they had absolutly no control over. I do hope you are able to fina a stable regiment. Do you mind when people ask you silly question about things they ve seen or read about? I ask because I saw something.. just last liike 20mins or so on the discovery channel had sparked my curiousioty ever since.
 
     It is awfull that pain medication has become such a double edge sword for you. You are NOT alone. As time goes by you will come to see there are MANY others like you. Seeking pain management options to suite your lifes needs can be hard. I too, have those same needs in reguards to my pain. I, like you, was perscribed a whole cornicopia of pain medications. None of which were a long term solution.
 
     Pain Management specialists are very skilled at treating Chronic Pain Patients. A pain management docotr can tailor a plan that meets your needs and your desired goals, within reason. Though a word of caution.... Pain management , for alot, means breaking down each cause of pain and treating each. Alot of us are one combinations of XXXdose antidepresant + pain reliever + other cause specific methods of treatment . The really good Pain Management doctors will literally give you a whole "life" makeover.  So.. I guess what I am trying to say is the start up takes a very long time. For me, it was 3months on pain aspect , 6mo whole life changes.  It is worth it though. It might be something to consider.
 
     When it comes to tapering off your medicine.. I am afraid I am of little use there.  shakehead   I am still learning about the differant medicines / uses. Sorry. My battle is with inflammation mostly.   confused  
 
     In any case.. I really am very glad to meet you. Hope to get to know you better as times goes by  smilewinkgrin
 
*huggs*
dani    
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Smoochie
Regular Member


Date Joined Jun 2009
Total Posts : 71
   Posted 7/11/2009 5:24 PM (GMT -7)   
Ryan,

Wlecome aboard, I am too new to this site but have enjoyed my time here so far and I like to participate in these forums whenever possible and enjoy reading the responses given by its members who all seem to care very deeply. That being said, I have been on large amounts of pain medications myself, but I have never heard of anyone taking that much Oxycodone a day, I am not sure if maybe you meant Oxycontin or not, but I also take Percocet 10 mg and I take 8 to 10 a day, which is a large amount but that in itself would only amount to a max total of 100 mg a day. That is alot and when I have had to wait even the night because my script would not be ready to the next day at my docs I would start going through withdrawel symptoms and the legs are just the beginning of the problems it gets worse, way worse. Oxycontin is way worse than the Oxycodone (Percocet). I was taken off that a couple years back and it was the worst time of my life, please,please get help with this, I tried on my own with the Oxycontin and I thought I was going to die and that would of been a help right at that moment. I wish you the best of luck and if you need someone to talk too please hop on here and someone will be around to talk to, and if you run out of meds and have no way of getting more, go to the emergency room to have them help you with the withdrawel and maybe they ca get you into some type of treatment plan. Ryan, take care, and I hope you can get off these and they can help you find a new method of trying to deal with the pain.
 


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 7/11/2009 6:20 PM (GMT -7)   
Heloo and welcome Ryan!
Im very glad u found this site too! i havent been a member too long but already ive gotten more support than i hav since i started with this long and winding medical issues road... and im sure u will find that too! I really agree with what else had been said, but its so very important i wanted to restate it! (sorry if thats annoying...) but you abosolutely need to involve a doc... again, i dont kno if u hav a pain management doctor, if u do u should definately go see him and he will be ur greatest asset in tapering the meds... also if u want to switch to a diff med for pain, he would also be ur greatest asset in finding what that med would be, and also he would kno how much to taper off by and over what time and such...but also when u can start taking the new meds... if it has been ur primary doc who has been doing the pain meds, really talk to him about this, and he should be able to help u taper... if u dont trust ur primary doc, then i would definately find a pain management doc, cuz honestly it is just about the best thing to do in ur situation... these docs really think and approach pain differentlyu than a primary or any other doc, and thye help people switch meds and taper off meds every single day! And besides that, after u r off the oxys or significantly down, he will be able to help u with different options! Its honestly the best step anyone in chronic pain can do and i cannot stress that enough!

Anyway that is a huge dose of oxy u r on, and please do not try to rush it! u will most likely hav withdrawls, and they can be very very severe if u dont taper properly or over enough time, and only a doc will kno what those are! Please NEVER try to withdraw or stop ANY meds without informing your doctor and making a plan with ur doctor of how to do this! And even if ur not willing to go to ur doc or a doc to talk/plan for tapering, at least call them! and if they r not willing to do this with u, ask them who u can go to who will help u! Also, i wanted to say one more thing, which has been an issue ive noticed recently, once u and a doc come up with a plan for tapering, please actually folllow the plan! i kno it sounds stupid, but some people try to rush it cuz they think they can, but u can really hurt urself by just rushing it (not to mention doing it without a doc) and it makes the whole withdrawing process even longer!

I hope some of this helped. again, glad u found this site, and hope u get off these meds SAFELY! and after that i really hope u get some relief! Good Luck, and let us kno what happens, and how its going! (and if u need extra support or going thru a hard time, plz remember we r here, and we go thru them too!)
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


rispeed
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/12/2009 10:58 AM (GMT -7)   
Thanks so much for the overwhelming support i REALLY appreciate it!
 As far as oxycodone/oxycontin goes in my original post i said i take the 80OCs twice a day, those are the oxycontin, and i take 75-90mg of oxycodone 4 times a day.
 
I am going to make an appointment to go talk to my doctor about it, my primary care doctor is my HIV specialist, hes the one who prescribed to me and i am very close with him, hes really good to me. So i have no problem talking to him about anything.
 
I have seen a couple of pain specialists but they werent much help, one of them just wanted me to take fentynal patches which i dont want to take at all and the other one i just went in, and he didnt even really talk to me for 5 minutes and wrote me scripts for morphine and vicoden he was kinda goofy.  So my primary said dont go back to him..
 
three weeks ago i started going to a Psychiatrist who specializes in pain management, and i started going to therapy every week.. They are finishing up their report for my primary this week and i should have some answers. They did tell me i had a moderate to high degree of depression, and a moderate to high degree of anxiety. Obviously!
 
The psychiatrist had mentioned cymbalta or lyrica so well see what happens when they send the report to my doc. and ill keep you posted. I really can't wait to get some real pain relief, on top of all the other stuff i deal with this pain sometimes puts me over the edge. I just want to get an axe and have someone cut my legs off. And im sick of being treated like a drug addict for taking oxys. people just dont understand. Well ill be back later im suffering from one of the worst headaches of my life today so im going back to sleep, i saw all the replies from my email and wanted to come on and say thank you. I defineatly wont withdraw without my doctor really knowing whats going on.
 
Thanks so much everyone !
 
Ryan

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 7/18/2009 4:26 PM (GMT -7)   
 
 
rispeed
OMG!! You have been through so much in your short life.  I tell you, you are handling things much better than I would be.  I am just wondering WHY do you really want to stop taking the meds if they help you?  Have you thought about maybe taking a "Holiday" from the pain meds for a little while?  Some people talk about doing that so they can get better results from the pain meds.  We all build up a tolerance to our pain meds...but stopping because you think they are "The Devil"?  Maybe you should think about this before you make any rash decisions.  I know that taking all the meds you take must be horrific, but think about how bad it will be if you stop...The pain would be terrible.  Please think about it.
 
Me.

 I hate Boats!!!!
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/15 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/18/2009 10:36 PM (GMT -7)   
Hi Ryan and welcome!

You are an amazing man...do you know that? Hard to realize it when you are in the depths of pain. I'm also on Oxy but no where near what you take. I've been on 80mg/day plus 4 percocets (7.5/325)/day. Even at that rate I'm not willing to tell people what I take. I refuse to allow people to sit in judgment of me when they haven't lived my life. I know you understand totally.

There ARE good pain treatments out there and you should be getting some better therapy. I'm no expert but I would surly think there are better combination of medications than just giving you more and more narcotics. That should tell them right away that it's not working. (OK, done ranting...lol)

I think going to a pain counselor is probably the best idea ever! From what I've read and lectures I've seen, living a complex life as you do can really mess with your mind. I honestly don't know how you do it so well or at all! The therapy will also help with the anxiety and feelings which I would think a good idea.

Please know that you have an entire family of friends here and we are willing to hold your hand (extending hand) and help you through the rough times anytime you are in need. And I can tell from your posts that you are capable of doing the same for others who come along behind you. Keep in touch and I will pray for healing and peace in your life.

Hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums ~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis, collapsed disk, and a few other side dishes.

(\__/)
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If you ask what is the single most important key to longevity, I would have to say it is avoiding worry, stress and tension. And if you didn't ask me, I'd still have to say it.
George Burns

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