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I'M IN HELL! Body Rejecting Meds!

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Posted 4/10/2015 2:56 PM (GMT 0)
Aw Dixie, sorry you're going through such a rotten time :( not sure I've got much to add to the great advice you've already been given, but just wanted to offer a virtual hug and my thoughts.

And though I'm not sure of the exact test name or provider - or even whether you can self refer (GP maybe, if you can't get it done via your pain doctor?) but you'd be looking for a "drug metabolising enzyme genotype panel" in your searches...haven't had it done personally, but I know a few people who have.

Also - do you guys have compounding pharmacies over there as we do here? Just thinking/wondering that if you do have a drug that you know works in IV form for example but isn't available commercially in another form - it might be possible to get it made up in orodispersible tabs, or suppository - or whatever is needed for you to get the meds into your system and working for you.
Posted 4/10/2015 3:56 PM (GMT 0)
Thank you, sweet=)  Yea, I'm struggling for sure...second-guessing my decision to try PM again after a brief failed attempt 10 years ago.  One just shouldn't have to suffer even more at the hands of IMO an incompetent "pain management specialist".  Shouldn't just the title infer that he specializes in the tough cases, for heaven's sake?

I guess the thing that keeps "sticking" in my throat is this...He reviewed my records prior to taking me as his patient.  He could have said "No, I'm sorry I can't help you."  Instead he told me that we would work together to find a solution to my pain.  It's gone downhill from there, as he was ready to quit after the second med "failed".

Yes, we have compounding pharmacies, but as for Darvocet...I'm guessing that the ingredients were banned by the FDA.

I was SHOCKED to realize that if one has excellent insurance or deep pockets, there are newer meds available.  One should not have to bankrupt their family in order to pay thousands of dollars per month for medications.  Has anyone priced Zohydro, Exalgo, etc.?  I often wonder...what might my life be if I had proper medical care like I once did?  I have such an appreciation for everything a healthy person takes for granted.  My DH has gone through this with me.  There is heartbreak in his eyes, as he looks into mine, for HOPE.  It's just not there.

~Dixie

Posted 4/11/2015 6:14 AM (GMT 0)
Dixie,

I'm so happy that I could help. I knew I had read something about Darvocet working for a patient who got no relief with anything else. And that sounded exactly like your situation, so I dug up that article again last night.

I found that all the articles I posted for you were helpful in understanding my situation. So they should be helpful to you, too. If nothing more, they might help you to get your doctor talking (and thinking!) about this/your situation.

I also just pulled out the results of the genetic testing that I had done a couple months ago through my new PM. The lab/company that did my testing was Proove Biosciences. Here is the link to the test /proove.com/?page_id=1111. And as far as I know, the testing was covered by my insurance. Hope you can get one of your docs to run it or something similar, and finally get you some help!

hugs,
Skeye

Post Edited (skeye) : 4/11/2015 12:19:05 AM (GMT-6)

Posted 4/11/2015 10:52 AM (GMT 0)
Dixie,that's what is hard for me to get.

That you got relief from Darvocet,a non-narcotic.

And strong Narcotics don't help.

It doesn't make sense.

Lots of things don't make sense though. idea
Posted 4/11/2015 10:10 PM (GMT 0)
Thanks, again, Skeye and Tmouse...Yep, that's me the mystery!?

Skeye, again I can't thank you enough for your research.  I am by nature, quite analytical (heavy on the anal).  I am an individual who NEEDS to know the "why" and "wheretofor" no matter what.  Thanks for the science to back me up=)

Is your Morphine still giving you the relief, several days in?  I truly hope so.

TMouse...It's not that "strong narcotics don't help".  They have the potential to "help".  My GI tract either rejects or rebels, leaving a narrow margin for success.

I believe Darvocet is/was classified a narcotic, though certainly not a "big gun med".  I always "made do" with it, because it didn't cause gastric disturbances for me.  It was a yen and yang thing.  Do I wrythe in pain with chest pains and life threatening constipation?  Or do I clench my teeth through 75% of my pain in order to pacify my angry GI?

Tough choices.  Gut wins.  I can't live if I can't move my bowels.  I don't want to live if meds "sitting in my pouch" put me face down in the floor, feeling like my chest will explode.

Hope you're enjoying a sunny weekend in Bama.  My sibs attended the Red/Blue game at Ole Miss today.  I had to call calf rope.

~Dixie

Posted 4/11/2015 11:33 PM (GMT 0)
Dixie,I think I'm understanding now.The side effects.

Rick

Post Edited (tidalmouse) : 4/12/2015 5:52:10 AM (GMT-6)

Posted 4/12/2015 8:33 PM (GMT 0)
I've been threw hell myself my dear and I've help others in your same situation. I have a few clients who suffer from same things and different things and my process seems to rectify there problems from a cpl months to six months . Has anyone recommended liqurish root ? It calms the inflamation in the intestines and bowls calming everything down.. But with this you need to also watch what you eat and make sure your feeding your body whole foods so it can heal. Removing gluten from your diet is a big game changer! I can send you a link to a whole food supplement that is remarkable at healing and it's not chemicals or garbage your body can't handle.. I've seen ppls ibs heal chrones disappear thyroid balance psoriasis just vanish just by taking these whole food supplements . We get sick cause we don't give the body what it needs and I hope it's ok to share this link it has Dr testimonies and proven results and I wish everyone could not be in pain! My drs still don't know my issues but I lose my immune system yes back and am on the healing trail myself! I hope this link finds you some comfort and information that will guide you to days filled with smiles and not pain! Ps this product is world wide shipped so you are able to change your location at the top right of your page. Good luck and God bless.

I have edited out your contact information as it is against the forum rules here at Healing Well. You cannot solicit to members of this forum.

Post Edited By Moderator (straydog) : 4/13/2015 10:29:12 AM (GMT-6)

Posted 4/13/2015 12:39 AM (GMT 0)
What is your daily bowel regimen?
Posted 4/13/2015 3:37 AM (GMT 0)
Dixie,

So far so good with the morphine. I've been on it now for a week and a half. And I'd say that on average, I am getting a 30 - 40% reduction in my pain (which is HUGE for me). Plus I also seem to have more energy/feel much more like "myself" since starting the MS Contin.

Only problem that I am having is that it only seems to last 8 hrs, not 12. I told this to my doc, but he wanted to stick to twice daily dosing for a month. And then see how I am doing, before deciding whether or not to modify my current regime. As he said, we can always increase the dose and/or frequency, but it is pretty much a one-way-street. As once you increase it, it is next to impossible to decrease it again down the road. And since I don't have much in the way of options left, it'd be best to try to be conservative with the morphine, if I can. Makes sense to me. So, we'll see how this next month goes. But overall, I am beyond thrilled with my results so far! Hope one day soon, you will be able to experience something similar, too!

If I could finally find some relief after 8 yrs of this, there is still hope for you, too!

hugs,
Skeye
Posted 4/13/2015 4:02 PM (GMT 0)
Blue skies, Blue skies!  That's what my therapist told me to tell myself when I only see "darkness".

 

You are my happy skeye this morning.  I THANK YOU for that, sweet lady!  I am so elated that your current trial of morphine is providing a level of relief.  Indeed, that gives me hope.  I could definitely cope with 30-40% reduction in pain.

You are SPOT ON with the "feeling more energy" without being dragged down by SO MUCH pain.  I want that, too...especially with summer on the horizon.  I want you to feel better and reboot for your Fall semester!  It's gonna be okay.  It's GOT to be okay, doesn't it?

(((Big Ole Bear Hugs))) back atcha!

Dixie

Posted 4/13/2015 4:54 PM (GMT 0)
Roccky...Sorry, I lost my darn post.  I'm having some issues with my server.  I'll try again if you're certain you want to know. shakehead

Right now I'm happy (yes, happy) to report that senna softener and Perdiem are producing movement every 2 to 3 days.  The Fentanyl seems to have cleared my system, allowing my colon to awaken. tongue Please understand...I don't blame opiate trials for ALL of my constipation issues.  NO...there are many long-standing complications there, without the introduction of opiates.

My GI/Proctologist has explained that I have a flecture in my left quadrant.  They described it to be much like a crimp in a garden hose.  I have to use methods to soften stool/absorb liquids in order to maintain any level of motility.  I must rotate meds regularly because my GI tract "adapts" and gets resistant.

I will try to list several that I rotate with.  They are Kondremul (a milky liquid), Milk of Magnesia, Mineral Oil (all of which are vomit-worthy).  I also rotate from PeriColace/Colace (back to the presciption days).  I've tried regimens of Miralax, Benefiber and Metamucil.  Mine is not an issue of fiber intake, so the Miralax is the more successful.

I have MANY methods in my arsenal, as daily dosage is required.  Upon enrolling in PM, I found that NOTHING seemed to move my bowels.  I tried something new for me...Casada Segrada from GNC...sadly, no.  I've suffered up to 11 days, bloated and distended in pain...so much so, intake was impossible.  The hospital grade enema (repeatedly) was my last resort.  That apparatus is a necessary part of my repertoire.  The drug store bottle enemas, glyceryn ampules etc. are no good for me.  Motility is essential through keeping the stool somehow "lubricated" so that it can move, rather than form hard dry obstructions.

My situation as been borderline impossible and life-threatening at times.  My PM doctor does not comprehend ANY of this. Yea, I know. I NEED comprehensive treatment.

Okay, enough about poop...Let's talk PARTY TIME at the water park with Nathan!?!  I hope you had a most wonderful trip together.  I know y'all made memories that will make you giggle for years to come.  That's food for the SOUL...Good stuff, doll baby.

 

Hugs~Dixie

Posted 4/23/2015 7:17 PM (GMT 0)
  smhair UPDATE for anyone interested...STILL NO PROGRESS on the pain management front.  I spoke with my PM doctor's NP.  She said the same thing my PM said when I suggested Genetic Test..."We don't do those". 

 

WHY don't PM doctors readily avail a simple cheek swab that can determine how my body metabolizes pain meds?  WHY must he insist on dragging me through the bowels of HELL trying meds that ARE NOT working for my anatomy?  I told his NP via phone that I had weaned off the Fentanyl with the help of Benadryl and the Zofran he had prescribed for my Morphine trial. She said "Okay then...we'll see you on the 29th".  Huh?  What now?  I asked if they had a cancellation 2 weeks ago..."NO, he's snowed under, trying to get things tied up before his trip May 1st".  Oh, excuse me...I wouldn't want to interfere with my doc's travel plans to the middle east!

Y'all Are sick of me...I know.  So am I.  I just spent 2 hours calling all of the major medical centers in my state, asking whether their labs provide this specific test. NO.  I did speak with a very kind and knowledgeable guy (lab tech) who understood my dilemma, as his sister suffers with gastroparesis. He talked with me for 20+ minutes trying to help me "hash out" obtaining this test.  He recommended my contacting Mayo Clinic.

Meanwhile, he gave my GP who called UMMC this morning, the info for QUEST LAB.  My GP (bless her sweet heart) is intervening on my behalf.  She wants to order the test, but understand...We are rural...Nobody does this test!  Neither lab in 2 hospitals nearby perform this test.

     Y-E-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-L-ING, WAILING, SOBBING, GNASHING OF TEETH

Somebody tell me...Why does EVERYTHING have to be so effing HARD?  The energy I've wasted trying to get help for just some of my debilitating pain...is gone.  the med trials have left me with a tummy that won't digest food, malfunctioning at both "ends" of the "spectrum".

As the saying goes..."I may as well go to the garden and eat worms!"

Sorry for the verbal vomit, y'all.

~Dixie

Posted 4/23/2015 7:28 PM (GMT 0)
Dixie,I hate it so much that you're going through all this.

I kind of feel a little guilty because my pain management has been such a breeze.

Just know that you can always vent here or send me an e-mail.

I pray that the old adage is true that "Good things come to those who wait".

I wish I knew the answer.

Sending Positive Vibes your way.

Take care and God Bless.

Rick
Posted 4/23/2015 8:03 PM (GMT 0)
Still interested.....

Thank God for the lab tech who listened and helped. Maybe that will lead to progress!!!

Is the simple cheek swab something that could be done locally, then sent away to be read? No, that would be entirely too simple.

I'll join with Rick in sending positive vibes your way along with good thoughts and prayers.
Posted 4/23/2015 8:10 PM (GMT 0)
(((Big Ole Bear Hugs))) TMouse...I thank you so much for caring.  I am ever so grateful that you have a good PM doctor.  I just DON'T.  I've known this since day one! shakehead

My GP is a sweetheart...but she DOES NOT prescribe pain meds.  She got burned by a patient who was a home health nurse.  She was diverting her pain meds for profit.  One bad apple...

I've gotta admit...I'm rock bottom, but I can't stay here...too many of my senior peeps depend on me. 

Thank you, my friend.  My email is always open.  We can "talk" anytime you want.  I may have to make a road trip to Bama. smilewinkgrin

~Dixie

Posted 4/23/2015 8:50 PM (GMT 0)
Thank you, Abilene!  We must have been posting at the same time.  Your encouragement means MUCH!

Exactly...Swab local, labcorp pick-up, results...Entirely too simple.  Believe me when I say I'm giving the "condensed version"...oh, no!

I even contacted the compounding pharmacy I used 20 years ago.  I remembered they did a saliva test for cortisol levels back then.  I think normal range is 5.  Mine was 19.  Can't imagine what it would be now...hmm.  I thought perhaps they could do the test.  They don't offer it, but felt the PM doctor should have ordered it right out of the proverbial gate.

I'm starting another script of 1000 gram a day Valtrex for the SHINGLES.  This stress is just making matters worse.

This defies LOGIC.  nono  

 

Posted 4/23/2015 9:32 PM (GMT 0)
Omg, my heart goes out to you. Praying you find relief soon. So sorry you are going through this. "Hugs"
Posted 4/24/2015 2:30 PM (GMT 0)
Thank you, FB...My suffering doesn't exceed others'.  I just can't seem to get a break that doesn't involve my neck. shocked How are you feeling today, sweet?

Hugs~Dixie

Posted 4/24/2015 11:11 PM (GMT 0)
Oh Dixie, reading your story....my heart hurts for you. I wish there was a simple solution that's just been overlooked, something to give you relief from some of this physical and emotional pain that you contend with, day in, day out. I know things are complicated and that a lot of things that could be tried, are ruled out because of those complications. And I don't have a magic wand.

But, what I have is a heart that truly feels for others, a desire to help them during their journey, and an overabundance of hope that I can offer up when the journey gets stormy and doubt and fear lead to despair.

I believe in you and trust that the marathon you're running in search of a solution WILL reap you results. I know we all get weary, but we can dump what we need to here, make the load a bit lighter for one another and give each other enough energy and support so each of us can keep fighting the good fight.

I don't have answers for you. I have a leg that hurts. LOL. Pretty simple compared to the vast majority of folks that come here. But I 'belong' here. I'm with people that 'get it'. And I'm with people who help me keep it in perspective, who help me remember to not give up because it's worth it .... because I'm worth it.

And you're worth it.

I don't ever want you to forget that.
*hugs*
Posted 4/25/2015 4:16 PM (GMT 0)
(((HUGS)))

 

Thank you for the kind and compassionate words.  I know there's HEART behind that=)  It means MUCH to me.  Don't minimize your leg pain, though.  Pain is PAIN.

My GP is contacting Quest Labs to inquire about their genetic testing for metabolism. I will see my PM on Wednesday.  I'd rather nibble on a horse turd...than deal with his idiocy.

~Dixie

Posted 4/25/2015 4:54 PM (GMT 0)
Dixie hun, this entire time I have been posting about my family and had no idea that you have been dealing with your own personal pain. You have kept me positive and supported and that is the sign of a truly loving person. I can't tell you how much I appreciate the jokes and stories to keep me going while you were dealing with all of this.

I sure do wish I had something to offer you in way of a suggestion for relief! Keep at it, don't give up. There is something out there somewhere. Maybe the right person hasn't heard your story yet.

I have a couple of cute jokes my girls use to tell everyone when they learned them. Hopefully they will give you a quick little giggle.

What did the teddy bear say when offered dessert?
No thanks, I’m stuffed!

What kind of a cup cant u drink out of?
A cupcake

Where can you see hamburgers dance?
At a meat Ball

lol these are all corny but innocent and fun stuff I learned from my girls.

I hope that you can find a way to get this resolved quickly. Hugs and love to you xxx
Posted 4/27/2015 7:31 PM (GMT 0)
Hey Leila...I justed posted on your thread for dad.  Please let us know how things are going, okay?  I'm concerned about your dad and YOU, my friend.  I know what stress does for CP.  It "ain't" pretty.  Please take care of YOU, too.

Thanks for the funnies.  I truly believe that laughter is a great medicine. tongue

No apologies necessary for my woes.  They are long-standing and will never be "resolved".  I'd just hoped for respite through pain management.  It's not yet happened, but I MUST keep trying.

I had another rough weekend with GI issues, but managed to keep my DH and my tradition of celebrating my aunt's (chosen mom) 87th birthday. 

FORWARD is the only direction God gives us.

Hugs~Dixie

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