Frustrations with nurses and offices!

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Monty's Mom
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Date Joined Aug 2010
Total Posts : 664
   Posted 8/10/2010 11:19 AM (GMT -7)   
As I am sure you are all familiar with, I am having some issues with getting adequate pain control. Tramadol and sparingly used Vicodin don't seem to cut it, and nerve blocks didn't work for my adhesion related pain. The pain management physicians in the area either don't take my insurance, or feel they don't have the experience necessary for treating me. I am working with my CRNP at my family doctor who is compassionate and caring, but this is out of her range of experience also and praying we can find a PM doctor to help us.
 
I have allergies and sensitivities to many drugs, percocet, Paxil, Aleve, Celexa, Imitrex and many types of tapes and soaps. We have tried the fentanyl patch which caused severe vomiting for days, so she discontinued it. I was dissappointed, because the pain control was actually pretty steady. She had me try Savella and titrating to the correct dose, but in half the amount of what a "normal" person would take. It is causing not only vomiting, but debilitating dizziness, mood swings, depression, and nausea. I would rather take a drug with 1 side effect than a drug with 5. The side effects are not getting better as the Savella is being titrated up, they are increasing daily. It is to the point where if I want to do something, I just don't take the Savella. I called the office. The nurse told me to use the fentanyl patch again, but cut the 25 mcg dose in half. All the paperwork and my pharmacist says that cutting it in half may cause all the medication to be released at once, causing overdose. I don't want to overdose, because doesn't that just make me look like I am abusing the medications? Especially after having so many issues getting pain control? I won't even get into the years of being called an addict and making it all up just to have drugs.
 
Now the poor nurses at the office are having the doctor call me later, because this is "something they have no training for." All she is doing is repeating a message. I asked 1 question about the safety of cutting the patch in half, simply because I don't want to overdose and have that hanging over my head as though I did it on purpose. Has anyone successfully cut a Mylan fentanyl patch in half and not overdosed? Am I being that annoying patient that every doctor's office dreads hearing from? (I have worked many years in health care as a medical assistant, radiology tech aide, medical records and scheduling and have known many people who felt that way about patients!) Does anyone else have any stories of the months or years and numerous calls to offices until they reached adequate pain control?
 
Finally, is there a medication that exists that has helped anyone achieve pain management that doesn't knock them on their backs all day? I am ready to throw in the towel. Either I am on my back from the pain, or the medication. The vomiting is doing wonders for weight loss, but not my feelings of self-worth and happiness!
Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, and adhesions.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 8/10/2010 11:30 AM (GMT -7)   
Absolutely do not cut that patch in half. Oh, I cannot believe you were told this. The dr can write you a script for a 12.5 mcg they now make those. But again, do not cut this in half. Tell them to call a phamacist and he can tell them this could be deadly.

I have a intrathecal pain pump from either having allergic reactions or the side effects from the pain meds were terrible. But, I also do this with other medications like my BP meds and such.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 8/10/2010 11:34 AM (GMT -7)   
I use Exalgo for my adhesion pain and it works really well 80% of the time. It is basically a once a day pill of the medicine Dilaudid.
Hysterectomy>4 laproscopic surgeries since 24

Cervical>

Meds - Exalgo - 8mg once per day (hate it)::Amrix 15mg 1x day: Pristiq 50mg 1x day

____________________________________________

In the United States today, there is a pervasive tendency to treat children as adults, and adults as children. The options of children are thus steadily expanded, while those of adults are progressively constricted. The result is unruly children and childish adults. ~Thomas Szasz

snobrdgrl321
Regular Member


Date Joined Jul 2009
Total Posts : 278
   Posted 8/10/2010 11:48 AM (GMT -7)   
I currently take 15mg ext release moraphine every 12 hours. Works GREAT for me, but then again, I seem to have a high tolerance. It allows me to work in an office for 8 hrs and then do as much as I can at home too without it being too bad on me. But I am concerned that this new PM Dr I will start going to will wanna take me off it and "try" something less hard core.... I really hope not, cuz I fould what works, dosent have ANY side effects on me and I dont get all weirded out on it! YEA!
Good luck to you and NO, DO NOT CUT THE PATCH!!
Donna
Tethered Spinal Cord~1.5x1.2 cm spinal cord cyst at L5/S1  (Lumbar Laminectemy completed 9/10/09)~Scolosis~Migrains~Leg Deformity~Foot Deformity~Knee, Hip, Back, Neck Pain~Severe Depression~Insomenia~DDD~Artheritis (Spine)~Spinal Bone Spurs~NEW: Herniated Disc T5/T6 
"I'm not going to vacuum 'till Sears makes one
you can ride on"
~Roseane Barr~
 

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/10/2010 11:49 AM (GMT -7)   
Do not cut the patch.....there is a gel inside and it will release it all at once! I use MS-contin for my pain relief....however, it feels like I am not getting much relief anymore! Sorry you are having problems with meds!! That really stinks!

Take care of you!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement ***Fibromyalgia***TMJ***GERD***Severe Depression***VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uteru****Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/10/2010 12:18 PM (GMT -7)   
Thank you all for the advice on medications. I plan on bringing them up to my CRNP and/or PM doc when I finally get to see them again.
 
Good news though! The CRNP's nurse called shortly after I posted here, and apologized. She had asked a receptionist to call me and explain the message, and she was not prepared for my questions. She explained that she forgot that I had medical training and would ask questions she may not understand and would require some research. They informed me never to cut the patches and that I can pick up my new prescription today. Now I just need a ride! Also, she is doing some research on medications and methods to try as well, since none of the PM docs within 4 hours will see me with this insurance. YAY! Hope is shining through, not just with getting a new Rx, but having someone on your side and ready to go to bat for you. What would CP sufferers do without someone to help in that manner? smilewinkgrin
Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, and adhesions.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/10/2010 12:51 PM (GMT -7)   

 

   Dear M Mom,

     Good afternoon! I am glad you had a chance to stop by. Is today another high pain day for you? I hope it isnt escalating out of control. Last time you posted I could tell you were at your witts end with mediciation. *hugg*

     I dont know if I mentioned it or not... but I too, am sensative to most medicines. The biggest problem in my pain treatment in the beginning was that I couldnt tolerate the pain meds being offered me. So, for the first year my pain control was under treated with meds. Over treated with steroids.

     I feel your frustraition! But I think after reading everything you have gone through, perhaps it would be a good idea to try the 12 mcg patch. Give it a good month if possible. Then after a month if you are "okay".. then increase it. It just takes a while for some people to be introduced to new medicines. Also, and I highly recommend this! Get used to drinking an "ensure" per day. Eat high protien meals. You know, egg whites for breakfeast, baked chicken for supper, peanuts for snacks... you get the idea. That way when you vomit (and if your anything like me, even in the best circumstance there is vomiting in the beginning) you can quickly regain your strength. Your body wont loose as many vital vitamin and minerals it needs. Is the patch the only medicine you are taking for pain relief or are you on a "pain med cocktail"?

     I sure hope the doctor calls you back soon. I can well imagine you are just about fed up with it all. Hang in there and know you are in our hearts here!

*hugg*
  dani


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/10/2010 1:39 PM (GMT -7)   
Dani,
I am having a bad pain day again. Your sharing with me leads me to believe that those of us who are sensitive to medications have a tendency to be offered more of a steroid or physical therapy related approach to treatment, which in some cases does not always offer relief. Being so sensitive to medicines, I can't take a cocktail all at once. I have to try the tramadol first. If it doesn't work or wears off, try ibuprofen, then my last resort is Vicodin. I hate the stoned feeling narcotics give me and have family with a history of addiction, so I have been careful with it to this point. The patch was being introduced as my first medication for relief with tramadol and etc. for backups.

Now I would give a whole lot to have better pain control. I am not aiming high either and expecting no pain, just a tolerable level would be a vast improvement. It feels like every medication I could possibly have tried in the last 30 days has been tried.

Thank you for the advice! *gentle hugs* I have been eating high protein and whole foods and taking the vitamins my family doctor insists on everyday, otherwise I don't have any energy with the vomiting. I will give it a full 30 days before I give up on it this time. My CRNP finally got in touch with me and thinks that a slow titration up is what is required also and is willing to wait things out. It helps to have every one here to listen and offer comfort and advice. I think what helps the most is knowing you are never alone.
Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, and adhesions.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 8/10/2010 9:50 PM (GMT -7)   
MM-
There is one manufacturer who makes a 12.5mcg/hr patch. Maybe something to look into. Glad your doc got back with you.

take care,
frances

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 8/11/2010 5:09 PM (GMT -7)   
Happy news! I have the 12 mcg patch and have some relief, but still with vomiting. I am not ready to give up yet!
Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, 7 pelvic surgeries for pain, ovarian cysts, and adhesions.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 8/11/2010 5:15 PM (GMT -7)   
Are you vomiting from the pain or the patch?
Well, maybe it doesn't even make a difference. Have you tried Zofran or any of the other anti-emetics? I did that for several weeks until my body got used to the fentanyl. Then I was able to quit the nausea meds & just use the pain meds.

Maybe talk to your doc about that.
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