Harm Reduction The Pain Management Megathread (Chronic and Acute Pain Discussion) v6

[Mracid]

Hey runtoparadise, even though the pain pump is an alternative form of the drug entering your system it stil acts the same. The opiate will attach to the mu receptors in both the brain and bowel. Thats just how the anatomy works. I hope this was helpful in any decision making.

I have seen something on Webmd about a ''pacemaker-like'' device that actually blocks pain by delivering a low levels electrical signals to the spine or specific nerve to block pain signals from reaching the brain. http://www.webmd.com/pain-management/features/chronic-pain-relief-new-treatments?page=5

 

[maxximus5431]

feel ya there

Hey, first message so bare with me. Im a severely disabled veteran, IED in 2012 broke my neck and back. Had 4 discs replaced with PRODISC C and fusion in cervical spine and have had 4 lumbar fusions, with another on the way in two weeks. Currently on 120mg MS contin and up to 100mg oxycodone as needed per day. As well as 1800mg neurontin. My VA docs were convinced that SSRIs would be lofe changing for me, due to PTSD. I lost two close friends in the blast that crippled me. Was close to suicide even with two beautiful daughters and an amazing wife. Just the constant daily severe pain amd loss of the ability to physically do things ive always loved was overwhelming. I never admitted to a doc my suicidal thoughts, because I KNEW they would do some bs and yank or reduce my pain meds, which would basically be pulling the trigger for me. So assbackwards. But I did and DO talk daily with my pastor and opened up to my wife about thoughts of ending it. I did like you said and tried the ssri, horrible for me. But continued to fill the sxriots so they would leave my Pain meds alone. Im just praying to God that this next fusion, which will end with me having L1 to S1 fused with rods screws and crossbars....will alleviate even 25% of my daily excruciating pain. Even with no probs getting refills or increases in meds, Im tired of the carousel of running out early, WDs...being a zombie, etc. Still, some days are almost too much

 

[closeau]

First maxximus, thank you for serving our country and protecting us civilians. You must be a brave man. Thats a lot of complex work on your back and must be exruciating. Im on 60mg of MS Contin and took me years to get that. Also on dilaudid. I certinatly cant relate to your problems but have battled suicidal thoughts for years. What youre doing is the best thing you can do, talk about it. Best remedy. Suicidal thoughts grow with isolation. I understand. I have 2 buddys who did a couple tours in Afganistan and they struggle with it too. Im so sorry youre in so much pain. I understand you protecting your pain meds. I do same thing. They can take them as quick as they give them. I hope your VA is good. The one here sucks. Ive been there a lot lately bringing a roomate up there and the staff is just so mean. You sound like a tough dude so keep at it annd good luck with your procedure in couple of weeks. Let me be the first to welcome you to this thread. Its a wonderful thread full of great people and we all suffer from pain. Some worse than others but nevertheless, we all understand how crippling pain can change your life. If you ever wanna talk about anything especially the mental stuff, feel free to message me. I often wonder after 3 attempts im still here. Last Feb of 2015 was very close. I was so mad when i woke up in trauma room. I wanted to die dammit. I also with my pain due to blood clots and taking my colon out last summer suffer with mental illness. I do take meds for it and its fine. I get great care where i live. Well, good luck with everything and hopefully well talk shortly. Hang on man and God bless.

 

[DixiChik]

Hey Maxx and WELCOME to our little group! Although we wish chronic pain on no one, we embrace all who need to come here and stay a while. My goodness, your post puts into perspective my seemingly insurmountable health issues. You are an inspiration. I am happy that you decided to join us.

As Closeau said, my deepest gratitude for your military service. My deepest sympathy for your suffering and the loss of your brothers in arms. My words seem so inadequate, even as I type them. Please know they are truly heartfelt.

You are SPOT ON with your comment on the PAIN PUMP. It is a variation on delivery of meds, but still affects the bowels. Many people don't realize that it doesn't cover multiple pains throughout the body (according to my docs).

My husband and I talked about my bowel issues last night, as my left side gurgled loudly. Great topic for conversation, huh? I was cramping so badly from my side into my back, but trying to hide my pain. He worries so. I had taken Toradol, but it provided little relief. We came to the same conclusion...

It's a crying fucking bat shit crazy shame that in 2016, BIG PHARMA hasn't formulated meds for severe constipation (that are affordable). I struggled for two years to find a way to afford Linzess @ $300+ per month. Bless the heart of my GI's nurse. She gave me 84 sample pills back in November (post-hospitalization). This med doesn't work well for me, so I still have to take softeners and stimulants. My left colon flexure throbs as it clogs with stool that cannot make the "turn". I can literally feel the distention as though it's about to RUPTURE. The multiple CT scans done showed massive amounts of stool collected between the transverse/decending colon. Yet, these inept "specialists" tell me "they can't read the scans". FFS...Don't you have radiologists who CAN?

I know y'all have seen "Gut Guy" on the commercials for IBS with D (little pink innards cartoon). Big Pharma's trying to appeal to the masses with cartoon guts, bladders, and depression sidekicks. There are also commercials now for opioid induced constipation. What they don't tell you is that these scripts (Movantik) are ridiculously expensive. There is Relistor, which is injectable, like a B12 shot. IF ONLY I could afford the Relistor...Maybe it would work for me?

I can't blame my choked bowels on pain meds, although they've made the issue worse. There are days when (as insane as this sounds) I hurt so badly I want to cut out the disease/adhesions myself. I'd rather just bleed out and get this cluster fuck of pain over with, than drag it out.

I cannot begin to fathom the horrific Hell on earth you have endured and are left to cope with, Maxx. It warms my heart that you have a wife and children to reach for. I understand the desire to end it all, but like you, I find solace through my faith and counsel. It doesn't ease my anger and frustration. I am pissed off when I awaken most mornings, just to realize that I am still alive...not living...but alive.

RTP...Thanks for asking about the pain pump. I appreciate any and all input. IF ONLY the pump were the answer for me...Even if it were, at the rate I produce adhesions, it would quickly be shut down!

I was certain the St. Louis endo surgeon would at least do an exploratory lap. But, "no...see a general surgeon". No thanks.

 

[closeau]

Dam Dixi, ive read your story but.....dam. I just feel horrile. No human should have to deal with that shit....no pun, lol. They sthould have fixed this long ago. They must know you are in. Pain meds never have constpated me, sometimes the oppisite. I pray you find an empathetic surgeon who will fix the obstruction. I also pray you dont end up with the dreaded ostomy but i wouldnt think you would if the could unblock you. I mean, how do you cope with this? I know you talk about and thats good but i would be be a complete wreck. When i read about you and Maxx i feel like such a baby. When do see general surgeon? My wish is relief for you. I know whem my colon was prefrated in 7 places the pain was completly unbearable. I cant imagine living with that. I hope you have someone to tak to becides husband and bluelight. You know we all care about you butyou know wha i mean. I worry about everybody out here but you the most. Do you take any pain meds now or do they make things worse? God, what a fucked situation. Dam us and out GI issues. I dont know your money is but id love to see you fly out here to Duke and have them fix you. I know flying in your condition is prob not an option. My surgeon Dr John Migaly is the best and i knoe he could fix you. I just want you better. Well, its nap time. The opiats make me sleepy, not nodding. Whatever ya wannña call it. I will pray as always and dont forget, youre inspiration to me. Im extremley depressed right now but knowing youre out there living to the best of your abilityg. Keep it up cause i need you. I have feeling youre gonna get relief and mercy soon. Goodnight and ill hit you up tomorrow?

 

[iLikeTurtles]

I wanted to share my experience with chronic pain and pain management in my first post here. I'll try to keep it relatively brief as my first draft was getting out of hand.

I've had chronic pain going on 6-7 years now. It all started with a reflux surgery I essentially volunteered for back in 2009 called a nissen fundoplication - this is by the way one of the hardest parts I had to overcome, knowing I didn't even absolutely need the surgery. Sure I had significant reflux but I could have managed it with meds still.

Anyway, after the surgery I started developing frequent abdominal pain along with other GI symptoms. I initially focused my efforts on getting the surgery reversed, which the original surgeon said was absolutely doable in my initial consult. Turns out it's not, not really. It can be relatively safely be taken down to a less tight "wrap" - essentially the bottom dangly part of your stomach is wrapped around your esophagus - but a full take down could be disastrous including the possibility of having to remove your entire stomach.

So I got it "loosened," which didn't help, and after some more opinions gave up on getting a third surgery.

The help I got from doctors was laughable - nothing OTC worked, no GI meds helped and as soon as it became clear I would need to rely on narcotics, I was told good luck and can't help you. Interestingly it's amazing how willing doctors are to try invasive procedures and surgeries over pain medication. Many offered a spinal cord stimulator (by the way I was in my early 20s at the time) which after my first jump to surgery experience and advice from others I refused.

I eventually told my current PC, who helped me here and there with small scripts norco that I couldn't take it any longer and was ready to drop out of school - in my last semester at that - if I didn't get help with pain management.

Let me back up for a second, by this point I had finally been diagnosed after countless tests, with chronic pancreatitis! Go figure I wasn't just trying to scam the doctors for meds after all!

So I see this guy who writes buprenorphine 16mg per day and not knowing any better start taking them. Well I find out what this is mostly used for and eventually I'm trying to find another doctor because my insurance won't even cover it. I then try another office who at first turn me away because the bupe is in my records so "I could be an addict" said the doc. I then get a letter saying it was written for strictly pain management and find out that this new PM doc wants to do a nerve block on me before even thoroughly consulting me on the procedure. They also put me on some absurdly low dose of tapendol(so?), after being on 10mg percocets every 4 hours (not a fun transition considering I only had 1 IR pill a day from the new PM down from 4-6 of Percocet) from my PC who helped me in the transition. So after being told that they won't do my meds unless I do the injection I peace out.

I eventually end up with a GI who puts me on the correct meds and doses, who also knows expertly about the nerve block procedure, which they advise against due to my age and its iffy outcomes with chronic pancreatitis patients, and say narcotics are basically my option at this point. I find a good PM doc for a bit but have to move and now I'm with one who is again trying to push the injection during my first and only appointment with him - and at this pointthat several GIs who specifically do that injection are telling me not to do now. Especially since I'm doing really well on my meds and not having to go up in dose.

I'm hoping to possibly do acupuncture in in place of attempting another invasive procedure I've been warned against. I'm hoping this will allow me to lower my med doses, and satiate the doctor as well so I have no disruption in care.

 

[DixiChik]

Welcome ILT...I like turtles, too. I've made my husband stop the vehicle to allow me to "rescue" them from certain death in the road. (Imagine that, in my Sunday dress/heels) I digress!

Just want to welcome you and say that you are amongst folks who care about each other HERE. Please make yourself comfortable and stay awhile. I am so very sorry for your suffering at the hands of those who take the oath to "do no harm". I feel ya!

 

[SKR]

^Once I read you had chronic reflux I thought 'Pancreatitis and/or gall bladder issues"......I had chronic reflux for years until my hospitalization with acute pancreatitis......anyway it's all sorted now (I'm also a chronic back pain sufferer) but to have pancreatitis and the pain associated with it chronically would be the pits. Everyone's different but my back pain is stronger than the pain I had associated with pancreatitis but pancreatitis pain for me was quite sickening, I just felt ill, I had pain but it was a nauseating kind of pain that made me feel I was dying which you kind of are. I feel for you.

Shout outs to RTP, DIXI, CLOSEAU, ANNA.B, SHROOMY, MORPHINE-DREAMS and any of my pain pals I may have forgotten, welcome aboard to the new members and old members who maybe new to this thread.....this ongoing thread is a forum in and of itself......this thread is a warm welcoming non-judgemental supportive thread to all and everyone not only chronic pain sufferers but those who are dealing with depression, anxiety, panic attacks, depression and suicidal thoughts many of us are dealing with the same shit so we support one another where we can. I love you - hugz 'n' drugs for you all!

 

[iLikeTurtles]

Thank you both for the warm welcomes!

That's interesting you should say that in regards to having reflux and it being related to pancreatitis. I kind of just assumed that the surgery was to blame, and while I think it may have exacerbated things, it might be that I was always predisposed to the chronic pancreatitis. I had reflux since I was a baby practically, since I was very young at least.

It's good to share and talk with others who understand pain. Family and friends care but most simply can't relate, which makes it hard for them to fully understand what we go through IMO.

 

[Runtoparadise]

Welcome Maxx & Turtles!

We love having New members joining our group, to share thoughts & ideas, med options, supports, suggestions, & generally just be there for one another whether it's a casual Post or when you're needing to rant or vent.

There's also the dark side forum for anyone with major depression, anxiety & suicidal thoughts.

Dixi my darl, I adopted you but here you are looking out for me lol, you were spot on,- I saw the neurosurgeon today.

Surprisingly he was a lovely fellow, & after examining me & listening to my concerns as well as reading the documentation from my local hospital following my convulsions he actually did the dictation in front of me!

That's never happened in around a decade of seeing specialists.

So, very rapidly while he was doing the examination he found that my right upper arm was much thinner than my left, I'd not noticed,- but he said at least 3-5cm smaller & that for a few possible diagnoses my arm had atrophied.

He has a fair idea it's all cmng from my neck after the impact of the car, but wants more imaging done,- some advanced types which I can only attend one of two places in my state that conduct these scans, - of course in my states capital again. *groan*

At least in his dictation he said he thought that surgery was not urgent atm & that while I presented with signs of nerve damage to my neck, there may be more than one thing going on. We'll catch up again after I've had these scans.

We also had a chat re: my sudden convulsions for about eight hrs two or so wks ago, when my friend had to call an ambulance.

He said it's actually quite common that when your brain is over it's limit or capacity in regard to emotional or psychological stress to have a physical response including what I went through.

He's also sending a letter to the TAC, which will further help my case.

As SKR said, hope all the regulars are doing ok, & once again, welcome to the newcomers!

Rtp

 

[closeau]

Thats good RTP. Progress is good. Youll make your way out of this. Stay strong!!

 

[Znegative]

Hey guys, I have a question,
I am not a chronic pain patient, but my father has stage four small cell lung cancer and has been prescribed roxi 15's to be taken every four hours. They do nothing for his pain. He is also on Gabapentin and Cyclobenzeprine, which don't seem to do shit for him either. From what I know, shouldn't he be getting some type of long acting or extended release pain killer along with the oxycodone IR which would be to take as needed for acute outbursts of pain? My mother and I tried to explain this to the nurses, who then talked to the doctor thinking that yes, they'd be able to do something along this line, but the doctor, who seems to be a bastard in general, shot that down. We are going to the hospital again tomorrow morning as he is starting chemotherapy, and I want to get my dad on a regiment of medication that at least somewhat dulls his pain-like, he was supposed to start chemo wednesday but he had been taking so much advil that it raised his kreatinine levels and it had to be delayed since they then needed to do an ultra sound. He's like the first person in history that prefers advil to oxycodone.

Anyway, he has been on the oxy for quite a bit of time, it's strange that it doesn't do much for him, has anyone here been in a similar situation in terms of not finding oxycodone an effective pain killer, and if so, what did work for you? I was going to tell my mom to try and get him on an extended release of morphine and then to either stick with the oxy IR or maybe switch it to Dilaudid, but like I'm saying, any advice would be helpful. This is for my father who is a pain patient, not myself, who is a junky.

 

[Whosajiggawaaa]

well I got my big oxycontin 40 mg script (now got a new good legit doc in my corner) a week ago today. and I still have like 47 tabs left (no supplementing the script with other oxy sources and no dabbling in H either). That's something for me. I've been taking them whole more often and not defeating the time release by chewing them as much.
i will strive for even better though. goal is sticking to the legit docs dose. and eventually tapering to a softer painkiller.

 

[DixiChik]

Hello Z and Welcome! Thank you for being upfront and honest with your intentions. My heartfelt sympathy for your dad as he fights this beast of cancer. Kudos to you for helping out.

FWIW your dad isn't on the "Advil over Oxy" island all alone. I'm there too. Ibuprofen doesn't give me great relief by any stretch of the imagination. But...It gives me more than my prescribed Oxycodone (through PM). Yes, the Oxy gives a little buzz for about an hour. The pain returns with a vengeance and RAGE takes over. Maybe my gene pool is murky.

Your dad should be given carte blanche with whatever it takes to ease his pain, since he is a cancer patient. It sounds as though his doctor is an insensitive asshole. Your dad is facing some nasty blowback from chemo, along with his existing pain. Any doctor worth the collar on his white coat should make him comfortable. Yes, you are correct I think with the ER med w/breakthrough pain med theory. Can you and your mom request another doctor's opinion?

I'm sorry I can't offer more, Z...I don't possess the knowledge of meds, whether for want or need. I refused pain management for 2 decades. I had never even tried MJ until last year when trials of MS Contin, Fent and Oxycodone failed. I've had genetic testing done to pinpoint my metabolism of meds following multiple surgeries (partial stomach pouch). Yet I'm still wandering in this wilderness.

PLEASE continue the good fight for your dad (and mom). This evil disease takes its toll on the caregivers as well as the patient. I send cyber hugs to you and your family.

 

[AnnaBanana333]

Hi all,

It's so good to see this thread alive and kicking, especially since many of us can't kick anything anymore! I welcome all the newcomers and recent posters. This space is indeed a great place to find support and understanding when most of the world around us cannot.

Being in chronic pain is exhausting. I am fortunate that I'm not in anywhere near the situations that some of you dear folks have to endure, (and Thank you, Maxx, for serving our country and protecting us), but do you guys notice how tiring this whole game is? Trying to figure out dosages, scripts, incompetent doctors...sometimes it DOES seem like too much. But try to hang in there; know that you're not alone.

Dixie, I do wish that SOMEONE would figure out what the fuck is wrong and just fix it!
RTP, SO glad to hear you met with a good doc. I had one surgeon do his dictation in front of me, and it was wonderful to hear him sum up what he thought, with notes I wouldn't have thought to ask.

Z, I am SO sorry that your father's doctor is being a dick. Seriously? Cancer patients are who they save these big guns for! Every person reacts differently to different meds; it's their JOB to make him comfortable! Personally, I never get any cool feelings off of oxy. It helps my pain, but if I ever take even a half more, I get nauseous. Sucks when I'd like to take a little 'vacation', but can't enjoy my meds, which is probably a good thing. Unfortunately, I am using my oxymorphone in ways that I shouldn't, but I don't even have fun with those, either. I miss getting high. I can only smoke right after my pee test each month. Traveling is too hard on my back; is a little couch vacation too much to ask for?

I hope everyone has a good night. It's great to see so many people posting and supporting each other. SKR, good to hear from you!
Hugs and drugs...

 

[Runtoparadise]

Closeau, -thanks again for your kind words & support. How're u doin atm?

Whosa,-good job. Something I'd always say "next mth I'll take as prescribed", but never managed to actually do. Well done dude!

Znegative,- You're correct, cancer patients should be given a wealth of options for round the clock PM.

It's great that your dad has yourself and your mother to advocate on his behalf. Do so with intent & follow up assertively & aggressively if necessary.

Also, it's very common for one opiate not to feel effective for pain relief. It's often a matter of trialling a few before you find the one that works well for your pain (well, your fathers).

Obviously you need a Doctor who is open and willing to try such things before you can find out what really helps your dad out.

Depending on where you're based, there's a number of long & short acting opiates. Morphine, fentanyl patches & lozenges, hydromorphone & dilaudid, (as you mentioned)...anyway, I'm in OZ, there's a few more options in the states.

Just a tip I've learnt from around ten yrs in PM,- those that don't respond well to the "Codones", generally find better relief from the "Morphine/Morphone" family.

Now get in there and advocate hopefully prior to your father having chemo!

Best wishes

Rtp

 

[maxximus5431]

Closeau well now my neurosurgeon informed me today that I have to wait another 6 months to perform the revision due to the fact that my previous spinal surgery was only a little over 5 months ago. He wants the other levels that were fused to have more time to heal. Which leaves me in this debilitating pain for another half a year. FANTASTIC. And a good quote I always try to remember is that suicide is a permanent fix to a temporary problem. Life....ANY life is too precious to lose. Just gotta keep fighting!

 

[maxximus5431]

It's freaking asinine that scripts cost so much. Talk about corruption...big pharma has literally made enough money to be above the law, when it should be a human rights violation to charge such excuberant prices for medications. Thank God for my TRICARE prime because I pay zero out of pocket for medications. Thats one of the silver linings to the severity of my injuries, I would go back in an instant and serve my country just the same, but im not gonna lie, each passing day eroded that sentiment little by little. But I have my beliefs and faith restored knowing that while yes, I suffered greatly and will continue to do so, some of my buddies paid the ULTIMATE sacrifice. I OWE it to those men to keep trying each and every day.

I'm really sorry about your bowel and GI issues. I can't imagine the pain and frustration you go through daily AND nightly. After the biggest IED hit my truck, they had to pull part of the trucks armor out of my abdomen. Top that with the fact that I had one of my spinal fusions done with an anterior or front approach (which left a nice 7in. scar) and both those things have given me crazy issues when it comes to going number 2 lol I just have to laugh, and have somewhat dark humor but know im not laughing at your expense in any way. I just always think "man, this SHIT SUCKS" because well....that's an accurate asessment. Best of luck finding relief from your issues, ill be praying for you

 

[iLikeTurtles]

Yeah, my sense of humor is definitely one of the things that got me through the worst - when I was getting zero help and being treated like I was just looking to get high, rather than a pain patient. But yeah I can empathize with that bowel stuff haha.

The other thing that got me through, and I don't need a bunch of sympathy for this next one nor am I sharing it for that purpose as we all have our problems and tragedies but my father committing suicide in the midst of this really showed me what impact suicide can have on others. I vowed never to do this as I was certainly grappling with those thoughts when I was getting no help.

Znegative - I can only speak for myself but adding MS Contin helped tremendously for me and others I've known. It also gets you off the roller coaster of just being on an IR med. I would start going through withdrawal if I tried to skip even 1 dose. Both IR and ER is the way to go but your father may need a different doc because he sounds unreasonable. Different meds work better for different people, we're all different.

 

[maxximus5431]

My sister went through the same situation with lung cancer, which was treated; chemo, radiation and meds all through Duke Univ. I will tell you that everyone thinks that cancer and cancer treatment automatically requires you to take or gives you the option to take the BIG BOYS of pain treatment, morphine or fentanyl or oxycontin. Even high doses of oxycodone (>50 or 60mg). It's tricky though because like in my sister's case, due to her reduced lung function and subsequent issues oxygenating her blood, she was only allowed small amounts of ANY opiate due to specific properties that ALL opiates contain, significant respiration and CNS suppression. I would ask your DR next time exactly why he has him on such a low dose. BEST LUCK TO YOU! I truly hope they figure SOMETHING out for relief