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Medullary Sponge Kidney Disease (MSK) Community
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686246 tn?1252428681

When the pain killers stop working...what then?

Hey All,

It's been a long time without me being on here, and I apologize for that. I need to set my settings where I get automatic updates. My daily kidney pain has sugnificantly decreased since they put me on a daily dose of Bactrim BID.. I still pass stones, and today I have a pretty bad UTI fever and cramping, and right back hurts so I may actually be passing a stone as well. My question is is it normal for the regular pain medication to stop helping. I've been taking Demerol every six hours, and it's not working any more, I have other issues, In December they found out I have for bulging disc and facet syndrome from my RA . I have been having a flare up and yesterday I though I would O.D. from taking so much pain meds, because nothing seems to help ........... I was stuck in bed all day yesterday and I've taken my morning pain medicine for this bladder medicine along with my daily SILVER,AND D-MANNOSE... BUT YET MY BLADDER STILL HURTS.. WHAT SHOULD I DO ASK  FOR STRONGER MEDS>? I feel odd enough just asking for that and telling a pain management doctor the demerol isn't helping that much anymore, i think he would just think I'm a junkie or something what should I do? It honestly doesnt help and wheN I'm not in pain I don't take anything and I don't have any withdrawls, the other day  I was pain free for two whole days and no pain meds, and I was in a great mood no sweats or anything and I've been taking Demerol pretty regular for over a year now, but it's just been increased to every 6 hours. Any suggestions? I'm going to join another group on med help,, RA OR BONE AND JOINT AND GET THEIR SUGGESTIONS FOR EFFECTIVE PAIN MANAGEMENT FOR THE BACK ISSUES. I was having epidurals , but I had to stop because they were $300 each and my deductible is outrageous. I wish I could have gotten them, that may have been a solution to the back pain and then the demerol may have worked for the kidney pain alone... Any suggestions for a more effective pain medication would be helpful.. and again.. SORRY IT'S BEEN SO LONG! HOPE ALL IS WELL WITH EVERYONE! :) Amie
9 Responses
168348 tn?1379360675
COMMUNITY LEADER
Hi Amie,

I wish I could offer some advice but I just don't know .. but wanted to stop by and say hello and I'm so glad you've posted.  Others will stop by I'm sure.  Another forum you can try is Pain Mgmt .. if you go over there feel free to let them know I suggested it.   Tuckamore is a CL over there and knows me.

C~
489228 tn?1291535054
HI Amy it is soo good to hear from you but sorry your not doing well.  There are several things to consider, again I am not a doctor but can share what I do when I get to where you are.

1.  See if you can get a simple UA in case you have gone into an acute infection and we get lucky, and we can actually get a culture and sensitives.  This of course will be ideal!
If the UA or dipstick is clear don't pay for a culture it is a waste of money.

2.  Increase your Silverbiotics to small doses throughout the day I believe the new FDA even approved dose is up to an once a day, for long term use,

3.  Ask to switch antibiotics because is sounds like your bacteria have become immune to the Bactrim.  This unfortunately is the down side to the biofilm infection
with no cures YET,,,(amazing things happening in the research arena!)

4. Tell your doctor about the increase in pain levels, and ask for his recommendations!
Most on chronic pain management are on one med continually and another for break through meds.  If you ask for the test, antibiotic first etc, he is more likely to be open to giving you something more for pain, He may also want to other types of medications to help control your pain,

5.  You might want to talk to your doctor and begin to consider having Dr. Wolf's procedure done.  It sounds like your getting to the place that you really need to
pray about, search out and again consider having it done!!

Hang in there and hope, and hope you get the help you need!  I will be praying that way!

Shelly
592774 tn?1325397342
Amie, I hope you are feeling better by now. I just wanted to assure you that  THERE ARE STRONGER MEDS!  If your pain does not respond to the pain medicine you have been prescribed, you probably should call your pain doc and see if he wants you to come in or go to the ER.
There are pain meds much stronger that demerol. Dilauded, Fentanyl,and Methadone are a few. They are all highly regulated and addictive, but have an important place in managing moderate to strong pain. (Do not go into the er asking for a specific drug, they could take it wrong.)
A few months ago, I had a bad kidney stone attack. I had taken dilauded (similar to morphine) and it did nothing so I tried a demerol and I was still in unbearable pain.
At the er, the nurse laughed that I tried a demerol after a dilauded did not help. He said it was like spitting in the ocean. Demerol is so weak compared to dilauded. They gave me an iv of pain medicine and I had relief. I have no idea what they gave me, but it did work. I was in the ER with my vitals being monitored so they could safely give me stronger medication that I could have taken at home.

IT is so important to consult your doctor if your pain medicine does not help. Some of these medicines are strong enough to effect your breathing if you overdose. It is not safe to take extra on your own.
Nancy
686246 tn?1252428681
Today my GP CALLED OUT INDOMETACIN 75 MG? I DON'T KNOW HOW THIS IS SUPPOSE TO HELP.? I got back to pain management Monday and by then I'll get it straightened out the demerol doesn't help as much as it use to I'm having to take 2 instead of one every six hours and when I wake up it's rebound pain this morning was agony, with my back and the full bladder, and backed up kidney it wasn't fun. I have tried dilaudid, percocet and loracets are weaker right? I'll ask for something stronger for nightime anyways, something to last 12 hours is what I need. Fentanyl would be great, because I never wake up pain free, but I'm so scared to be labeled. When I go to pain management they have everything written out. The scripts. I just get one. and they ask is the pain medicine helping,,, yep ok....... then leave, there are tons of people and there's only one pain management clinic in my town, and all doctors refer all their clients with chronic pain there, so it's like they are herding cattle, in and out.. no suggestions, etc.. they are giving me the pain meds primarily for my RA and back issues, when I tell them about the biofim, and even MSK, i get weird looks, so I shut up. My uro knows about MSK but doesn't think I should have pain when I don't have a blockage, NOT EVEN WHEN I'M PASSING LIKE TODAY, ONLY A BLOCKAGE, I DONT WANT PAIN MEDS, MAYBE A SPECIFIC ANTIBIOTIC WOULD HELP? I DONT KNOW SOMETIMES, I JUST GIVE UP.. HOPEFULLY THIS WILL PASS SOON.
TAKE CARE,
AMIE
686246 tn?1252428681
It's INDOMETHACIN .. SORRY
592774 tn?1325397342
The Biofilm discussions I had went the same way!  Oh, no, that is only with people that have devices in them like catheters, g-tubes etc.  UMM??? isn't a stone also a foreign substance in our bodies!  GRR!
The only reason I am on bactrim is because I started it for bronchitis 12/08 and it helped my kidney pain.  My Uro said it was probably a coincidence, but he was willing to give it to me because he doesn't argue with something that is working. Still no acknowledgment of biofilm.
The Inomethacin is an NSAIS.
Can anyone else go with you on Monday? DH has a pain specialist.I go to the pain doctor with DH. I help them "hear" how much pain he is in. He was not able to describe how much his pain was effecting him, but I could, as an outside observer. Now they have been much more aggressive in treating his pain. Can you keep a pain diary until your appointment?
489228 tn?1291535054
humm ask your URO what happens to chronic prostatitis patients that get calcium build up in their prostate>>>, and how successful that are at eradicating the
infection..?  You know why, biofilms,,,

Life is crazy right now, but I do want to encourage both of you.  As I have mentioned
I have a research paper just really few hours away from being finished, but because there is a medical practitioner etc. involved, time is an issue.  However some amazing doors are opening to me in the area of research and doctors treating biofilm infections.

I can not follow up like I need to right now, but I am extremely excited and hopeful about the doors that are opening, there is a good possiblity that I will actually be able to go and take the MSK/biofilm research to a physician currently treating other types of biofilms successfully, to present it to him.  My hope and prayer is that it raises knowledge and interest etc., that maybe one of these guys will take MSK as one of their pet projects and help us out here.  Your not alone I am afraid in this though
each of you know from the research I have sent you, that the reality is real, scientifically documented and yet they choose to be oblivious,,, grrr.

The other goal is to see a lab up an running using some of the culturing techniques i have learned about that can find these low level biofilm bacteria that are hard to culture for. I had simply put that info on the back shelf with no where to use and an now am hopeful that we maybe able to these techniques become available to patients.  This would allow for more accurate testing to find the right antibiotics.

Truthfully we are all tried.. I get tired of fighting too.  I even feel like giving up.  It often feels like a straight up hill battle on a  square wheel!!  But as long as I can I am going to fight for each of you..., but I need you all as well.  There is no one else who can really understand, unless they are walking through it themselves, which is why we so need each other.

Shelly
686246 tn?1252428681
You asked if someone could go with me to the pain appt and talk for me, yes, but the thing is like I said they have the script written before I get there.. they just say is this effective, and last time i said no, and they said well take as prescribed here you go..... and Shelly don't worry my attorney who is fighting for me for disability has all the biofilm information, some of the doctors may not believe it,, but my GP does, and so does my attorney which will also be submitted as a part of my disability claim. I wold print out a diary but I honestly don' t think the nurse practioner would look at it, I've given them all the biofilm information, and all my paperwork, they did do a bone density scan, MRI, AND XRAYS AND ULTRASOUNDS, they know I have serious issues other than the MSK, I have scoliosis, RA, four bulging disc, facet arthropathy, osteopenia, and now hypertension. and I'm 30!
489228 tn?1291535054
I am glad however the your GP and attorney believe you.  IN truth I would let them
both know that they are not controlling your pain,  believe that legally they have to
treat the pain too.  It wouldn't hurt to talk to BOTH of them about it.

The paper I almost have finished will given you even more evidence on the biofilm
theory, etc. and I am hoping that I have some medical professionals to add their
name to it too!  I will e-mail it to you if it will help as soon as it is finished.

PLEASE keep me touch and let me know how your doing!
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