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Chicken Shit (afraid) to Continue Pain Management

DixiChik

DixiChik

Bluelighter
Joined
Apr 27, 2015
Messages
972

:o :| :o Post Script...I never understood why my thread was placed in "The Dark Side". Granted, my story is DARK, but it's a search for answers regarding PAIN MANAGEMENT! :X

Hey...New here. I've suffered through almost 4 decades with little for pain management beyond Darvocet. Well, as you know it was taken off market. After 4 years of Tramadol (which I was told was closest to Darvocet)...I surrendered to bonafide pain management. I live in a fairly rural area, with PM available through local hospital. I have been enrolled for 1.5 years with no good plan thus far. I am currently awaiting genetic testing for pain med metabolism (should happen this week---yay!).

I have a surgically altered GI anatomy due to TAH/BSO for stage IV endometriosis. I have extensive bone/joint issues due to near fatal car crash in high school and the added SE of Lupron chemo treatments for the disease (it ravages bone density).

If I'm honest, I wish I'd never tried PM. The med trials have put my gut through HELL and diminished my coping skills not just for pain, but for major depression. Add a relentless case of shingles virus in my eye/face that remains active for a full year (due to stress)...I'm done.

I'm hopeful that this genetic test will assist my PM specialist in tailoring a better plan to manage my pain and depression. The sedative effects of meds tried to date are debilitating. A stimulant is preferrable, but I fear becoming dependent.
 
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Hi,
Did you post before in NMI? You sound familiar. We don't allow double posts in New Member intros, as you will be greeted twice. :) Would you mind if I moved your post to a better suited forum? I'm so sorry you are in pain. I hope you find some more answers soon as you mention. It's good to be hopeful. Hang in there! <3
Here is the The Pain Management Megathread (Chronic and Acute Pain Discussion) Version 5.0 ~ V. for starters.
 
Hey there Smoky...Sorry, as I promise I didn't intend to break rules with intro. I'm new to this sort of thing. I'm slow on the uptake apparently, so navigation is still a mystery. I've lost several posts due to my "user failure". I hope to get some responses from anyone in similar shoes as mine.

BTW...I'm "good" with whatever you need to do with my post. Thx
 
Hi,
No problem at all. :) How did the genetic test go?

I will go ahead and move to the Dark Side as it seems you are dealing with a lot right now. If you prefer a more drug related forum please let me know. I lost several posts when I joined as well. Sometimes copy your post before you reply. At least that's what helped me.
 
Sounds like your poor body has really been put through the mill. :(I'm confused though for why you would want a stimulant? This is simply going to add to your problems with depression as there are always tolerance and comedown issues, not to mention the dependence you rightly fear. I have been dealing with a lot of pain issues myself as I age (as are most of my demographic at this point!) and I have to be honest and say that with the exception of those that literally can't function at all without meds I notice that most of us do better mentally and physically adapting to the (slightly reduced) pain rather than having to adapt to both the pain and drug issues. I heard a line from a ninety year old the other day. She said, "basically if I have two of them one hurts like a mofo and the other just aches. What are you gonna do? At least i have my mind."
 
SMOKY...Can you advise me? I'm experiencing "user failure" on the brink of throwing in the proverbial towel. I tried copy/paste but this entire post is off kilter with spacing. I'm sure nobody cares, but I am confessing my OCD issues even with today's 140 characters or less approach. I guess I'm slow on the uptake (old fart and all). Also...Is it possible to paste this post in additional categories like PM and/or New Drugs or Basic Drug or something? I'm afraid I'm lost in translation in "Dark Side"...Thx

Please "bear" with me. It's been a BEAR trying to post this. Hope it works, but "hope" is never a plan! :!

HELP ME! I'm on themerry-go round of pain management since January 2014. It's not a ride I ever wanted to take, butwho does? Long story is justthat...LONG. It all began in 1961 when Iconsider myself FAB...no, not fabulous but "fucked at birth". It's been downhill from there.

I have only used Darvocet for pain over several decades,though I certainly needed strongers meds for extensive bone/spine/pelvicpain. I tried Tramadol after Darvocetwas banned. It provided no relief. I did not choose to enroll in PM, but withnew rules in place, my GP does not treat chronic pain.

My first meeting with PM specialist I was told "I don'ttreat pelvic pain, but I'll treat your arthritic pain. Pain is pain." He told me that there are medications availablethat could change my life forever...but they are expensive. I have no prescription insurance, so cost isdefinitely a problem. NO, I do notqualify for any assistance with costs. It's all out of pocket for me.

He told me I was "opiate naive"...Pollyanna, Iguess. I never even smoked a cigarette(nicotine or MJ). He tried me first onMethadone due to low cost and success with treating CP. (NO) He then tried MS Contin (NO) Oxycodone (?)Fentanyl patch (NO) and now back to Oxycodone. ALL except Oxycodone were highly sedating, as in comatose in my owndrool. The Fentanyl caused severe nightsweats and daytime unconsciousness. So...after 6 weeks of bank-breaking trial, I weaned myself off. He put me back on Oxycodone. I cannot afford extended release OxyContin.

Back to the original post of CHICKEN SHIT fears...I have tofunction in my life, with career and family responsibilities. That's why I've refused to be heavilymedicated most of my adult life. I choseto deal with my pain as best I could without the sedation and brain fog that Ihave experienced with pain meds prescribed post surgery. I STILL need to be cognizant and highlyfunctional. I never knew there was apain medicine that could give me relief and motivation. I never knew there were sedatives vs.stimulants. YES...go ahead and LYAO...Itold you I am new to this and I amscared to even reach for pain relief with all of the horror stories ofaddiction. The failed med trials overthe past 18 months have really dragged me through the bowels of depression andanxiety. As I mentioned before, I'mbattling SHINGLES in my eye from the stress of it all. I don't think any of this has been worth itso far.

I requested genetic testing for metabolism of pain meds frommy PM. He refused because he said they were expensive. So are prescriptions that I pay out ofpocket...not to mention to physical COST to my body. I've endured borderline bowel obstruction dueto opiate-induced constipation. (yes, I use softeners/laxatives...but resortedto hospital-grade enema bags) The SEshave far exceeded any inkling of pain relief.

The Oxycodone has been the least destructive of my GItract. It doesn't really offer pain relief. It just makes me not give a shit that I'mhurting. It also helps to"lift" my depression. Theeffect lasts briefly...so I can see where this could become a problem long termfor CP management.

I got my test results back on Friday. I wanted to post a PDF of results sansidentity, but don't know if that's going to work on this site. I don't understand what the resultsmean. Can someone explain in simpleterms?

"ReducedCYP2D6 enzyme function is expected to decrease the
conversionof Codeine,Hydrocodone,Oxycodone,Dihydrocodein
orTramadol.
ReducedCYP3A4 and CYP3A5 enzyme function is expected to
reduce theconversion of Ketamine to its active form and slow
clearanceof Codeine,Hydrocodone,Dihydrocodeine,Oxycodone,
Tramadol,Meperidine,Methadone and Fentanyl.
Consideralt medications such as Morphine, Oxymorphone or
Hydromorphone."

That's the extent other than stating which NSAIDS are bestmetabolized in my body. BTW...I've hadsurgeries for Stage 4 Endometriosis (3 total) that have altered my stomachpouch, my small intestine and colon. Mybody does not absorb nutrients or meds in a normal way. I've also undergone chemo injection serieswhich have consumed my bone density.

Yep...I'm a hot mess without opiates. Do you see the conundrum here? I NEED help with the agonizing pain of DDD,Rheumatoid Arthritis, not to mention agonizing pelvic, vaginal and rectal pain24/7. I've done it for decades withoutwaving the white flag and surrendering to opiates. Do I give myself permission @ 53 to say FUCKTHIS...I deserve to feel better?

Yes, the Oxycodone makes me feel better BUT the rebound painis paralyzing. I wonder if it causes thepain in my body to scream for more? Irefuse to take the full 15 mg prescribed. I break it into fourths and take 1/4 per dosage. WHY? Heprescribes 90 per month, which allows for a 15 mg every 8 hours. I took that amount at first and thought"Damn, I CAN feel normal and productive again!" I asked him for 4 per day in the beginningbecause I felt that I needed 6 hour interval dosing. He said DEA flags 120 prescriptions, butwould consider 100 per month at my next appointment. Feeling better on the 15 mg scared me. I didn't like the feeling when it wore off. Since I cannot afford the ER form, I thoughtI'd "piece them out" to achieve a constant serum level without rapidonset of tolerance.

IF I'm going to continue with PM, I prefer to keep whatevermed I take at a minimum. I've read toomany stories. It's a slipperyslope. It can end badly, on so manylevels. I'm not chasing a high...I justwant to "want" to wake up every day...anywhere but here in this bodywracked with pain. Believe me, I triedto get surgical intervention in late 2013 by seeing 9 specialists across 3states. NONE of them would touchme. ALL of them referred me to PM and basicallytold me I've got to find a way to deal with the pain. They treated me like I'm not worth"fixing" since I'm "old" and damaged goods. They all agree that my insides are mutilatedand adhesions are rampant. More surgerycreates more scar tissue. The internalinflammation teamed with bowel distention and bloating prevents my bladder fromemptying fully, so I am constantly treating a UTI. The anti-virals for the SHINGLES are notfriends with my GI tract.

SORRY FOLKS...I've written volumes here in a world where 140characters or less is preferred. Myissues cannot be condensed. I wouldappreciate it if ANYONE will take the time to help me simplify this. I will see my PM on Wednesday and will givehim the test results. He may go batshitcrazy because I had my GP do the genetic testing. I just wanted to cut to the chase and findout WHY I am not responding to the biggun meds. I don't know whether tocontinue the Oxycodone since I can't afford OxyContin. I would certainly prefer a long-acting med sothat I could achieve steady serum levels. It's near impossible to do so with my current 1/4 piece method. It would be easier to say screw this and takethe 15 mg every 6 hours...but I fear that SLOPE.
 
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Disclaimer...I'm old school newby. I've lost more posts than I can count since joining BL. I KNOW IT'S ME...I don't know how to get things posted/saved. They get lost in cyber space. I should apologize for still hanging with the dinosaurs, but I don't. I just spent 1.5 hours trying to type this on word, then copy/paste to forum. As you can see, the spacing sucks jamming my words together. Part of that 1.5 hours was spent going through and correcting every space and making revisions to my post. Guess what? I LOST the fucking revisions. I give up for now...I really do.

Please be KIND with your responses or be SILENT and don't respond. I yam who I yam. Laugh all you want, but don't beat me up. I'm already battered and bruised.

Thanks...DixiChik
 
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Good point! Hope in itself isn't a plan but it can be an inspiration to make one. :) First off, have you tried rebooting your computer? This may be a silly suggestion but sometimes it works. If you have a pc you can download apps I think to help you.
Maybe try Bluelight user Support if you feel it's a problem with the site. To me it seems like your computer, although I could be wrong. So sorry you are having this issue, especially with so much pain. I am seeing a surgeon for my spine in Sept again. I live with pain daily.

I guess since you've been in pain management you've tried non pharmacological remedies?

Or have you tried thca? Not thc or cbd. It's non-psychoactive unless heated, non addictive and helps a little with pain. Of course after using opiates there is no comparison.

You could try another section most definitely, but I would suggest against double posting. Maybe ask about your results… We are not doctors here (mostly from what I know), but can speak from education and experience for sure. :)
 
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Hi there, so sorry you have so many pain issues!! I don't have much time atm, but I just wanted to say a couple of things.

I metabolise opiates quicker than expected, so am familiar with the enzymes in your test. CYP enzymes are what those seeking a buzz from pills try to inhibit. Theoretically, probably due to your GI issues, your liver is not processing the meds efficiently,- meaning the drugs may feel a bit stronger/last longer than they otherwise would. Which is probably not helpful info to you!

It's good info for your doctors to know so no one gets hurt or harmed by generous prescribing.

Please don't be afraid of addiction/dependence. This is the polar opposite advice I would ever give in regard to opiates. But, as you point out, you're not getting any younger, why, especially as you seem fully aware of the dangerous ground, why put up with such pain?

It's like women who give birth "naturally", there's no medal for being stoic & putting up with severe pain.

I understand that apart from oxycodone you haven't experienced pain relief which out ways the side effects. Believe me, it is trial & error, & purely exhausting trying to find a pain medicine that will help.

I've posted previously regarding how it's known in PM circles that morphine/morphones are more sedating of the opiates, than oxycodone. Oxy is also a mood lifter as you stated. Works on the "reward" centre of the brain.

Having said that however, I see you haven't listed hydromorphone as one you've trialled, or oxymorphone. With exception to the fentanyl, was it due to lack of pain relief or the side effects to which you wrote NO? Side effects such as somnolence, nausea, lethargy & constipation generally wear off in a few weeks while the pain killing effect doesn't.

Also, if the shingles is causing you an awful lot of pain, there's a newer drug, Tapentadol. Available in IR & ER formulations, it's structurally similar to tramadol but stronger. Iirc it's marketed for neuropathic pain. A mid strength opiate combined with noradrenalin.

Are you taking a disease modifying agent such as methotrexate or Arava for your arthritis? Also, (& I'm no expert in this area), since you can never fully empty your bladder isn't there some type of semi permanent catheter? Something you can look into..

Feeling I've forgotten to add something, oh well. Next time.

For a user friendly way to use BL, can I suggest using your phone? I do, just google it & log in. Making sure not to click on the cops disco,- also blue light ;) We've all lost painstakingly long posts at the start, just think of it like an initiation process. Your in!!

Hope this is of some help to you.

Rtp
 
Thank You, Smoky and RTP...I'll eventually learn the ropes, if I can overcome the urge to make a noose. :\

I'm an even bigger idiot with my phone, believe me. Patience is no virtue of mine. My eye/vision issues fuel the rage of "user failure". I should never have asked God how much worse pain could get? SHINGLES in my eye was not the answer I hoped for. I just found out that I need to see a neuro-opthalmologist, but the only ONE in my state retired last year.

I will see my PM tomorrow, but I'd rather eat dirt. He speaks with a heavy Arab accent. I speak with a slow heavy Southern drawl. We don't click. There's not really a problem with what he's willing to try, as my medical documentation is VAST. I AM the problem, whether it's absorption issues or lack of finances for the newer expensive meds.

I tried Nucenta many years ago, but it put me in the floor with gas pain in my chest. I was never able to know if it would have eased pain. I have not tried Opana, because I can't afford the OOP cost.
 
Well...I'm getting some better with my "user failure" with posts. I managed to only lose half of that one...still don't know why. I type the whole thing and hit "post". I'm prompted to refresh page/log in, try again. Huh? I'm drained. I just can't do this as I'm ready to throw my laptop against the WALL!?! :!

I DO SO want to convey my heartfelt thanks for your response RTP. I repeatedly searched my email over the weekend for notification of post reply @ BL. I was more persistent than a Mississippi Leg Hound, but found nada. I logged in today in hopes of finding something somewhere...I'm sorry I didn't see this sooner. ANYTHING you or anyone else can offer suggestion-wise considering my circumstances, I would totally appresciate. I'm lost and ready to just give up on the day to day futility that is my life.
 
I'm going to attempt to post an update. I saw my PM doctor today. He said that my metabolism testing shows that I am not fully processing the Oxycodone. He says that explains my needed increase for dosing schedule to 4xday. However, he says he cannot write for 120 per month. He will only write for 100 per month.

Can anyone help me to understand this? Would I be better off going back to Lortab, OR would it be limited, too? I don't fully understand the requirement to enroll in pain "management" if the doctor is afraid to actually "manage" the pain. He said he'd have no problem increasing the milligrams, but not the number of pills. Huh? Why would I want to increase mg? He suggested 30 mg to break in half and take every 4 hours during the day. The broken pills upset my surgically altered stomach. What do I do?

Thx for your responses!
 
Has your doctor ever recommended butrans patch? This medication is pricey. I read your thread and feel for you. I truly recommend you look into this drug. I think it being a patch could be very helpful. I take its sister drug suboxone, because I was on the pain wheel young in life and got very lost along the way. It sounds like you haven't become lost in all this and I commend you for that. All your looking for is pain relief and to maintain some since of normalcy and function. This is the one drug I have taken and can say I actually have clarity and function. Of course my situation is so different from yours. I wish you well.
 
Thank you Mrs. Grey. Yes, a renowned GYN at UT prescribed the Butrans patch in late 2013. However, I don't have prescription insurance as our finances plummeted in the 2008-09 economic crash. We both lost our careers with a Fortune 500 company and basically had to "start over". Thankfully, we have medical coverage, but not prescription. I stopped in the CVS that day with the Butrans script and was told it would be $500+ so I had to walk away.

Back in 2005-06, my Jeep GC was totaled, as was my already battered spine/chest/knees. I was given Fentanyl patches with the gel reservoir. I can remember I actually felt "good" for the first time in memory. Back then the PM doctor didn't prescribe 48 hour dosing, so I spent the 3rd day in the bathroom floor. I weaned off and left PM forever (I thought).

Most recently (February/March 2015) my current PM prescribed Fentanyl every 48 hours. The patch had changed and it adversely affected the med release. It seemed to "dump" entirely through extreme night sweats, leaving me comatose ALL DAY. That's not living IMO, so I weaned off.

I SO need an extended release med so that I don't awake every morning disappointed that I'm alive. He's told me that there are meds that can change my life, but they costs thousands per month. What has happened in America that we cannot afford the meds we need? I digress.

I simply must be cognizant during the day. Like most folks, I am overwhelmed with career, home and family plus oversight of aging parent with Dementia. She is wickedly evil towards me, making my existence even more difficult. I cannot take sedating meds even if they offered pain relief. I HAVE TO FUNCTION for everyone else. Most days, I wish I didn't wake up. There must be a better way.
 
I also have to pay for my own health care (self-employed, over 50 and have a ridiculously high deductible) so I know what I'm about to say will be financially difficult because I've had to pay for it out of pocket myself.Still, it may not be more than you are now spending on ineffective treatment and you may actually get better! I suggest going to an alternative medical provider (or several) to see if something outside western medicine might address the underlying causes of your pain. Western medicine has kind of lost its way in specialization and often the intricate interplay of systems is completely overlooked. Acupuncture can be very good for pain but you get the added benefit that it also addresses your immune system, digestive system etc. Plus you are not putting more chemicals into your body, you are stimulating your body to produce its own. I looked for a doctor that had also been trained in naturopathy as my primary care doctor and also go to an acupuncture doctor as well. Between the two of them, I have gotten really helpful information about dietary changes that have affected my pain (both gastrointestinal and joint pain from an auto-immune). I remember a Chinese doctor once saying to me, "Western medicine waits until one part of the body is screaming. We listen instead to all the whispers all along." It can be expensive to go to acupuncture every couple of weeks but overall I think it saves money. Have you ever tried going that route?
 
^Herbavore, I have utmost respect for you & the helpful & heartfelt posts you've written in other threads, however I'm not sure in Dixichiks situation these options would be helpful.

Increasingly, studies are showing aspects of eastern medicine such as acupuncture are at best placebo at worst opportunistic money wasters.

Especially in the case of osteo arthritic disc degeneration & rheumatoid arthritis, acupuncture & naturopathy would likely be useless to the OP.

Dixichik, you mention chemo injections. I think it was for your pelvis Or did you mean methotrexate for RA? RA is an autoimmune disease, you need to be taking dmards or the newer biologics to halt the progression of pain & disfunction.

Have you tried cortisone shots for your spine? I know youre finding treatments difficult & costly. I'm in australia so I'm not aware of the cost of medical help, treatment & different prescription costs in the US. Just offering any suggestions I can think might be of help.

With your GI issues, it's a possibility a liquid (morphine, hydromorphone), might be absorbed better. & provide more relief. Still, it's not ER, but taken first thing in the morning it'd kick in quickly. Maybe worth raising with your PM dr.

The reason he can only give you a certdin number of pills is, I believe, because he's scared like many doctors, PM or otherwise, of the DEA breathing down his neck. Just waiting to make a mistake or lapse of judgement & nab him for overprescribing. Such a shame the war on drugs is also a war on chronic pain patients.

Hope you're doing ok today Dixichik.

Rtp ❤️
 
Thank Ya'll from my heart for your helpful suggestions. I'm still not good with posting here, but I'm learning. I'll try to answer all questions/respond as best I can. I had several series of Lupron (chemical treatment that supposedly inhibits progression of Endo and PC) injections in the 90's.

The drug did not have that effect for me, as a second and then third surgery proved the disease thrived despite Lupron. Now, 2 decades later my bone density is compared to a 90 year old. The Lupron savages your bone/joints. I'm told that my bones resemble "Rickets disease"...prevalent in the days of starvation and malnutrition. Unfortunately, supplements DO NOT absorb through my small intestine as a "normal" person would.

I am currently taking Mobic for arthritis. I have taken various prescription strength NSAIDS, but potential for ulcers is looming. My RA doctor fears my immune system's reaction to biologics. So far, the cons outweigh the pros. I DO WISH I were a candidate. Yes, I have had epidural/facet injections in my cervical and lumbar spine, with less than stellar results.

(to be continued) Note: I'm trying to avoid losing my posts. It keeps saying "error: message too short" huh?
 
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PLEASE HELP ME as in step one, two, three...I just lost another extensive post (part 2) trying to address replies from herbavore and RTP. I promise I'm trying. Just when I think I get it figured out...I don't.

I type my post, then receive error message to either "refresh page and log in" (I AM logged in) or "message too short". I know I must be a total pain in the ass with my ignorance of process. I apologize again. :!
 
Dixi: When you log onto BL, under username is a box you can check that says: remember me. If I do not check that box, then when I am typing lengthy posts, I time out. I then get the same error message you get "refresh page and log in". I do log in again, and if by chance my post is not there, in the lower left hand corner of the reply box is a tab that says: restore auto-saved Content. Click on that, and then your message that has been auto saved is restored. Finish up the post and post it!! This works for me every time.... I hope it will work for you... Good luck!!
 
Hey, Dixi, I'm not sure what is going on with your posts. Maybe before you hit post you could go up to edit and copy it and that way if anything happens you can just past it into another one. Sometimes when you get the "message too short" you are inadvertently typing your response in the middle of a quote you are trying to respond to. Were you trying to respond by clicking on 'reply' or 'quote'?

The "refresh page or log in was a problem I used to have working on a computer that I traveled with that was old. So maybe that could be your computer?

@runtoparadise--never worry about disagreeing with me if you feel any advice I give is off base. <3 This is a discussion board so I expect to learn a lot by hearing the opinions of others and I most always do;). I never take it personally if anyone doesn't share mine and in this case you may know a lot more than I do. I will say I have benefited quite a bit from acupuncture for inflammation in my joints but my situation is very different.
 
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