Body Rejecting PM Trials: Can Y'all Help?

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Joined: Apr 15 2015

Hey there. I think I'm finally registered as a member. It's been a HOOT! I'm hoping wiser minds will prevail for me, as my battered GI (through disease/surgery) is rejecting PM med trials.

I will try to give some background, though I must warn you: It's chix stuff, technically. Pain is pain, right? I am a 53 year old woman with a lifelong history of injuries and disease. I have extensive spinal/joint maladies as well as stage 4 endometriosis. I am 21 years post surgery to remove my uterus, ovaries and tubes. There was severe damage to my pelvic cavity, vagina and rectum. I also took a chemical therapy (Lupron) and tumor-suppressing med (Megace) for years to prevent the disease from raging. The Lupron fed upon my ravaged broken bones. I have severe arthritis, BOB pain grinding in my spine and my joints.

I need anti-inflammatory meds, but the oral cause ulcers in my surgically altered stomach pouch. I have mal-absorption issues and problems with med metabolism as well. I enrolled in pain management in January of 2014 out of sheer desperation. I had seen 8 specialists across 3 states, trying to find answers (possibly surgical intervention)in the Fall of 2013. Although MRI/CT with contrast showed areas of concern (as did a Full Body Bone Scan) the GIs, GYNs, UROs, ORTHs, NEUROs, etc. would do nothing to intervene surgically. I have herniated disks (cervical and lumbar) annular tears, DDD, Stenosis...Oh, and SHINGLES in my eye/face for almost a year now.

Although I managed for almost 4 decades with only Darvocet for pain...At 53 I had to surrender to PM for some help with pain. It's not gone well, as I had anticipated. My tummy rejects meds that have potential to relieve pain. My most recent trial was Fentanyl 25 mcg patch (every 48 hrs) for 6 weeks. It brought no relief, but major SEs causing night sweats and dumping of meds. I slept most of the day in my own drool. Not acceptable. I weaned myself off after using them from mid February through late March.

I'm back at square one and MUCH worse for the wear. My ortho suggested genetic test for metabolism, but my PM won't order the cheek swab.

I'm no chemist. I'm lost when it comes to medication. I've tried to avoid it most of my life. I'm a hard case that doesn't fit in a neat little box. My PM is not invested...wants to give up on me.

A pine box is looking better every day. Thank you for listening, as I'm sure y'all don't relish reading this saga of mine. I would appreciate any helpful input.


sandi123's picture
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Joined: Sep 9 2012

night sweats may have had nothing to do with the fentanyl at all, but everything to do with the dumping of the fentanyl. One thing you must do when using fentanyl is ensure you don't become overheated, whether by too much clothing, hot showers, baths, or hormonally. Despite having your female organs removed, your other hormones could be the cause of the night sweats, so you probably need some blood work to rule out other metabolic/hormonal causes.
There are many other medication options to lessen the pain levels, as well as other modalities that most of us use to lessen the overall pain levels.
Herniated discs do not always require surgical intervention , and neither does stenosis, which is simply a narrowing of either the spinal canal or the foramina,which are little exits where the nerve roots in the spinal cord exit from each level. Unless the cord itself or the nerve roots themselves are being compressed, surgery isn't necessary.
Injections may help to ease some of the pain and inflammation, along with medications used to treat neuropathic pain.

goat's picture
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Joined: Nov 21 2006
im a guy

 My back has many issues though,,what were you taking before your very short FTD trial ?  


User offline. Last seen 3 years 7 weeks ago. Offline
Joined: Apr 15 2015
Hey Y'all.  I'm sorry I

Hey Y'all.  I'm sorry I didn't realize I had responses.  I thought I would receive email notifications of replies.

Thank you, Sandy...though I am astutely aware of these things you mentioned.  The night sweats/dumping/sleeping all day WAS without a doubt, Fent-related.  So was the life threatening constipation.  I've spent decades in pain throughout my entire body.  I was airlifted from a near-fatal accident in HS.  It's gone down hill from there, but I AM A SURVIVOR. 

Of course I've endured spinal injections (several series) with little success.  I endure Synvisc injections which cause trash can throw ups, in both knees to avoid TKRs.  I have TENS unit that drives me nuts.  I swim several laps daily.  I have a demanding career that shows no mercy for the "weak".  I have to put on the facade of tough bee-otch to get the respect of my peers.

That's a pretty tough GIG when your vagina/rectum feels like it's being routed with a serrated knife.  Oh, and that's in addition to grinding neck/low back and joint pain, and constant pelvic pain.  Endometriosis is a complex disease that most do not comprehend.  That's okay. 

Just believe me when I say...I live with pain that would put most folks face down in their own vomit!  I'm not NEW to pain.  I'm new to OPIATES.  I need to know if there is ANYTHING my GI issues can co-exist with that will relieve just SOME of this pain.

I see my PM on Wednesday.  I don't know where to go from here. Undecided

Goat...Hey, thanks man...I can empathize with your spine issues.  DARVOCET was all I took for decades.  No, it didn't take care of the pain, but it dulled it enough that I could lead a productive life, with no SEs.  I went from that to Tramadol (no) then Lortab (yes) but not a long-term solution.  This pain is forever. 

The Fent trial was long-lived enough @ 6 weeks to cause bowel blockage.  Note that it also provided no relief of pain whatsoever.  IMO, unconsciousness is not relief.  I need pain relief that allows me to function day to day, without severe sedation.  The med trials so far have been METHADONE (no) MS CONTIN (no) OXYCODONE (maybe) and FENTANYL 25 (no).  The morphine had potential for relief, but constipation was relentless.  The Oxycodone had potential, but needed OxyContin, which I can't afford.

I realize opiate induced constipation is common. Understand I have GI issues pre-existing before bringing opiates onboard.  I know how to deal with it, as I must take meds daily to have a BM maybe twice weekly.  MS Contin and Fent required hospital issue enemas.  MUST I choose debilitating pain (with constipation/vomiting issues somewhat managed by GI meds) or debilitating pain (with opiate-induced bowel blockages for 11 days...sick as a dog...tearing rib cartilage from heaving and the bathroom floor inducing enemas)

No easy choices here.  I don't need perfect...just POSSIBLE.  I need pain relief that does not sedate.  These trials of meds for 14 months have put me further into DARK DEPRESSION.  I have little guidance from my PM because he doesn't want to waste his time on a hard case like me. @#$%!  Isn't that what a pain specialist is for?

Any thoughts, suggestions or shared personal experience would be more than welcome.  I'm LOST.  Do I go back to square one with Lortab, then white knuckle through the pain and the depression caused by the pain? PLEASE HELP. 

DixiChik Cry

User offline. Last seen 2 years 21 weeks ago. Offline
Joined: Jan 10 2016
...i'm male and my heart goes out to you

you sound like a survivor...hang in there. I've been in PM since 2000. In my 20's, 30's and 40's I went from one Dr. to another with what I now know are "red flag" complaints that left my AS undiagnosed for many years. I was always told things like "you are too young to have chronic backaches" or " it's all in your head". I just happened to have a freak accident,  dislocating my thumb and having the cartilage compleatly disappear within 12 hrs. That's the only reason I was able to get diagnosed. But by then my SI joints had compleatly  fused and my back was loaded with stenosis and ostification. I counldn't do biologics because they also found a brain tumor so that little "trama" started me on the PM route. My life has totally changed and I'm still dealing with that grief. What I have found is all opiates are not the same and everyone is unique. After many trials I found a 12 microgram fentynal patch along with breakthrough hydrocodone worked for me. I'm lucky (was about to give up) but found a GOOD PM Dr. Unlike other opiates I have NO side effects. No muddled thinking, no constipation and no sedation.......I'm more active even though I still feel some pain it can be helped through Chi Kung, meditation, stretching, diet and some othe mind/body stuff I need to practice everyday.. What works for one person doesn't always work for another but i'm sure the answer is out there waiting for you. It could be just around the corner.

DyBNaps's picture
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Unfortunately every narcotic

Unfortunately every narcotic pain med comes with the constipation side effect. Although it is going to be different with every person. Because of the way narcotics block the pain receptors in our brains, they also control so many of our other body regulating areas. Narcotics block the natural production of different chemicals in our body, which causes our sideffects. Although there are many other kinds brands of drugs you haven't tried, most are going to be produced with one of the main chemicals used in the meds you already say you have taken, and didn't work, or caused you to many issues. Usually when you get to Fentenyl, that is usually reserved for cancer pain, or the most severe of pains, than you are getting towards the end of the prescription pain med prescribing. Also when a PM dr throws the meds at your pain, and your body, or mind don't respondmasage, they will usually label you as not a good candidate for Pain Management Narcotic treatment, and will probably refer you elsewhere, or discharge you becasue there is nothing they can do for your symptoms.

This is not what I would do, but working in the medical field, this is what happens. When a PT does not respond to treatment after multiple trials, then there is just so much they can do. Maybe alternative thereapys would work enough to help your pain, without all the sideffects. Narcotics are not a fail proof treatment, or do not work for many do to the sideffects. I use pain meds daily, which do not relieve all my pain, but in conjunction with alternative meds, diets, excercise, massage therapy, chiropractic care, and most of all my faith, I am able to lead a decent life, not pain free, but decent enough. And after years of suffering, I realized that was the best I could hope for.

Rocker Dan
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Dear Dixi, I want you to be aware that since you gain some benaafit from Oxycontin there is a way to be able to aford them!!!!!!  There is a form which you can find online or your pharmacy can provide entitled a P.A.P.P.L.(or close to that anogim) whic basicly says that other similer medicnes fail to provide the benafits that a brand only medication can.....when a medicne has no generic it is possable for a doctor to fill out a six or seven line short form allowing a renewable six month supply(one month at a time)tobe priced as a generic.This should have been implamated in 2010 when Oxycontin was altered and all generics suspended!  I was on Oxycontin and could not aford he brand and was not aware of this form,well i did know about it but in all the confusion overlooked it(we all know when a pain doc is filling out similer RXs one tends to not interupt for fear of being shown the door!)Anyway all you have to do is present this form along with a vaid perscrrrrrrrrrrrrrrrrrrrrrrription for Oxycontin at your pharmacy(Mom and pops drugstores where they know you are the best!)And a small co-pay at best should do the trck.Also may i say that given your condiotions 60,  60 to 80 mg oxycontin along with120 15 to 30 mg Oxycodone for breakthrrogh whould be best even as your doctor may sugest starting witha 60mg oxycontin ER and a 15IR oxycodone to see the benafits and be honest and let him/Her know if thhat is good.You must take SennaPlus laxitive which contains 50mg of ducosatesodium and 8.6mg sennocides.This is the gold standard laxitives which all hosptals perscibe along with most all opiates! I wish the best for you as your story really moved me and i tend to avoid this form of media.Peace, rocker Dan