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two 100 fentanyl patches ever two days. iwhen my spine keeps rupturing and arthri

Doctor wants to take all pain medicine away including two 100 fentanyl patches ever two days. Then only have injections. How will that work when my spine keeps rupturing and arthritis gets worse and peon is still awful even on them
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8976007 tn?1413330650
unbelievable.  i feel so bad for you.  you NEED to get another doctor asap

i don't know why doctors have NO problems prescribing the patch and are so afraid to prescribe oral meds.  the patch does NOT work for everyone.  i had horrible side effects and asked to be switched and basically the same response 'the fentanyl or i will grossly undermedicate you'.  unreal

you really need pain relief.  i cannot imagine living in that kind of pain.  :(
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Avatar universal
part..
I return home. Back brace on until,I reach my hospital bed that's i. My living room as my own bed is up stairs and sits three feet off the floor and I would need to climb to get on it. So low profile hospital bed that can be raised and lowered is what I had perscribed so as to not rip or cause my newly grafted spine bone to move even microscopically. As that could ruin the whole fusion !!!! So my orders were followed to the T. Back brace on from the moment I sat up or on the edge. On when doing anything including showers. Only 2-3 stairs for next two weeks. Ice when feeling pain and take my narcotics if my pain escalated at all. Well no need for that at all. Ice and vioxx were doing just fine. Anyway. I got myself on the bed and brace off. Laid down and had felt something wet ? Hmmmm wonder what I had spilled ? Put hands down and unsnapped my Adidas snap up pants and looked at my wet hands and saw red.  What ? Blood ? From where for Gods sake . Did she not wipe me off after removing my stitches AND staples ???? Now remember. I'd had a hip to hip at 12. A hysterectomy at 22/23 again , hip to hip, now a failed attempt at back surgery and a hernia repair to sew up my umbilical area , "again", and her she was removing everything I questioned because I thought I could in no way be healed there as I'd already done this a few times and it didn't look healed one bit to me. WELL GUESS WHAT????? I WAS NOT HEALED AT ALL. !!!!!
Popped right open that thing did. Out pooped all my insides. All the way to the brand new sewed up facial tissue. And bleed I did. My mom screamed. My youngest daughter screamed. My older daughter screamed. Her friend screamed and my house keeper screamed!!!! Only one not screaming was me. I couldn't see a thing but I could feel things and thing I should not be feeling were there.  All kinds of things. Ambulance called. They came. They refused to put my brace on. They picked me up instead of rolling me. I help my insides in and could stop them doing what came next. They had lowed the gurney as low as it could go which is about 1 1/2 ft off the floor and proceeded to bring up to about four ft high and snapped it in place. Of course not being braced by my brace and me not wanting to let go of my guts opi could only open my mouth and breathe as no,sound was coming out anyway. The most excrusiating pain I've felt in my life shot through me from ny head down to my toes. And continued for several hour non stop despite the surgeon who had discharged me he though it hour earlier but it was actually about 48 hours. He asked when he came into the ER who had pulled out his stitches and staples ?! They were to be in there for another 10-14 days ??? How did this happen ? Had I had problems, ? I should have called he said. No. No. God no. I told her to not take them I said. But she did anyway. Who he says , who, ?? I said the orthopedic  doctors nurse.  She had not had my file and it was to late for me to stop her she took them as I asked her to jot do it. From top to bottom. From crotch to boobs. Every single thing was gone. He was having a fit. Told me that me skin was hard to sew first time bc I had been cut hip to hip to many times and now going top to bottom where they intersect he won't be able to unite them. My skin was swollen and ripped and full of Lunt from ambulance people throwing a dirty fuzzy blanket on top of my open wound that he was using a scrub brush and had to scrub out all the inside of me that had started to heal and was now extremely filthy. He tried to give me medication but nothing was working. Searing pain ripped through me and tears just flowed steady. Hour after hour. Took him four hours to sew tiny tiny little stitches. And where they crossed, well there was a hole the size of a dime he just coulnt get it to stay. So he taped it up really good. I finally fell asleep about eight hours later.
Anyway. Longer dotty made shorter. It took about nine months before anyone believed what I continued to say from the second it happened. My fusion was broken. My back broke. The sever pain only went from a 10 to an 8 all those months. Shots every week sometimes twice a week. Pain medicine went from zero to 80 OxyContin three times a day and viicidine in between and ice , a none stimulator a tens unit three times a day. Front and back. Neck and lumbar. I exercised two hour a day. Went from half a mile to seven miles a day. Nautilus equipment purchased for in home use three times a day. If I had to be in pain I was going to be the strongest human on earth in pain. It couldn't be any worse. I knew it was broken and I didn't a test to tell me this. I was inside this pain and body and I know what was done to me. It never stopped. Yes after all these years it's changed. It's no longer always an 8. It's sometimes a 6/7 but it does get to a mine sometimes and it takes days to come down from there. Now mind you after the reduce he saw the broken bones and fusion. My cages were empty. And that's what's in me now. Empty cages. Scar tissue and no none grafted spine. Screws that had no where to screw into as the spot for them had already been used. So he did what he could. And here we are today except I've gone from 5'4 to 5' and have lost more disc and arthritis is far far worse. I can no longer take arthritis medication due to two heart attacks and two intestinal surgeries. Now anemia. Heart. Stomach surgery. Three more hernia repairs. Massive infection from the last one falling inside. And immune deficiency disease of two varieties. And constant pain!!!'
I ask to go from patches I hate to another form and this guy says my patches are causing my pain !!!! Do you hear me speaking ??? Or just watching my lips move and no sound coming out you *** ?  
Anyway. A pain psyc doctor has suggested a pain pump ? This is the guy the **** sent me to to tell him I'm an addict. Which he didn't !
Anyone have any other suggestions ???
Helpful - 0
Avatar universal
ended up with uterin cancer at 16 and had been advised to have it removed by 19. Instead I had a baby. Held on until I was 22/23 and had to have a hysterectomy. No one bothered to give me hormones or one thing to stave off my degeneration of my bones. So by 31 I started rupturing my discs and breaking bones for little reasons ? Despite working out. Eating well and doing yoga I could no longer work out, run, shop, sit at a desk even with 6 month intervals of PT. my knees were so bad they swelled beyond shoes. My lower spine messed with my bladder and bowels. My neck made my arms numb and stopped me from lifting and driving. I couldn't turn to drive ! So in 1999 a very recomended orthopedic surgeon did my first back surgery. Now in 1992- I broke my right arm in half when me and my snowmobile crashed after launching 30 ft into the air , snapping it in half half way between shoulder and elbow destroying very nerve from my shoulder to tips.
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Avatar universal
Thank you all so much. I get what you have and how you feel ! No one ver diagnosed that I my for years. Not until I got a copy of my umbilical hernia and reconstruction surgery notes did I even have a clue. In 2008 I ended up loosing my belly button. It fell inside. After six moths of wound treatment it finally healed up. But reading the notes told me how bad my insides were. My surgery ran four hour over and it was do to them having to use a laser to cut through all my scar tissue to even get to my organs. I had my first intestinal surgery at 12. My intestines plait wide apart and bled out until all the blood vessels clotted. Then no one could find where the blood had come from. Eight weeks on IV and no food. 115 # to 95. And a visiting doctor who was discharging me actually read my chart before signing off and instead of going home and being told there was nothing wrong. Probably hemroids!!!! Really!!!
He scheduled me back on IV and into ER ASAP for exploratory my thank god he did. If I had gone home after eating , within the first 24/48 hours I would have started to be slowly poisened to death with intestinal contents dumping into my abdomen. He found them totally severed and cut a few feet off each side and sewed them back together. Even as young as I was I had been given moraine by shot IM every four hours along with the antibiotics in a very large and long hypodermic needle. As back then only saline was used by IV. No pain or medication that way. I went home and my mother flushed the bottle of pain Medicean she was to give me after being cut hip bone to hip bone and having my insides taken out and sewed and cut. The pain MEDS were a very hot pink tablet that was used for mid pain until taken off market a year or so back after Tylenol started to cause people to die with higher doses. These had 650 mg in them and I can't remember the name. But instead of having anything at all my dear mother flushed them and said your fine now go to school and off I went two days later ! Talk about pain!!!! I hurt for about a year from what I remember. No more soccer. Tennis(I was going to junior Olympics for soccer and Tennis) no more gymnastics , softball , weight lifting , nothing! I was a real good athlete and had less then 3% body fat going into the hospital. At 115 I was all muscle. Coming out at 95 there wasn't any fat left and my muscles in my mid section no longer supported me for leg lifts, back bends walk overs , and being able to pick my little brother up with my legs hanging by a bar in the door!!! So much for showing off!!!
But that was the beginning of my down word spiral.
Helpful - 0
1926359 tn?1331588139
Ditto.

You need a new doctor.  Something very similar happened to me.  I have Crohn's disease.  I was on all kinds of meds for years and finally I got it under control and went into remission.  But I was still in agony with abdominal pain and swelling and lower back pain.  My GP began to think it was all in my head or I was drug seeking.  He sent me to a psychiatrist to be evaluated and the pscyh doc reported that I possibly had borderline personality disorder.  AS IF!!!  When I left my GP and found a new compassionate doctor through the pain clinic and began seeing a pain psychologist- she showed me my chart.  In his notes the psych doc wrote that I was far too beautiful and put together to be seriously ill or in pain.  He noted that I must be either a hypochondriac or have a borderline personality disorder.  I was like WTF???  I am an actress.  I've always taken pride in my physical appearance, and I work extra hard to make myself feel good on the outside because I cannot control how horrible I feel on the inside.
Anyways, at this point I started to believe that everything my former GP and the psych doctor were saying may be true.  So I went cold turkey off all my meds.  After two months I was in such debilitating pain all I could do was lay in bed and cry.  My parents had to take me to the pain clinic in a wheel chair because I could not walk.  The new doc at the pain clinic was amazing and he suspected I may have endometriosis given the history he took from me.  He referred me to the Pelvic Pain Clinic and an endometriosis specialist.  I had a laprosopic surgery done and sure enough- I had a SEVERE case of Stage 4 endo.  It was the worst case my surgeon had ever seen.  
So I began the long road of getting treatment for that. I had total pelvic reconstructive surgery done in 2010 and got off all the drugs again in 2011.  I was good until October of last year but now the endo is back full force.
My mom is still a patient of my former GP and she told him about my diagnosis.  He was horrified and extremely apologetic that he'd put me through so much and hadn't listened to me when i said I knew something was really wrong.  They allowed me to remove the psych doctor's report from my permanent file.

I am telling you all this because it's important to know that doctors are not infallible.  And that it is YOUR RIGHT to demand proper care.  If you KNOW you are not well and something is wrong and you are suffering, then you must do WHATEVER it takes to get proper treatment.
What is happening to you right now is inhumane.  Please find another doctor.
Keep us posted,
Hugs,
Lu
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1855076 tn?1337115303
I agree.
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480448 tn?1426948538
Sweetie, please find a new doctor ASAP.  That's just craziness!  :0(
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Avatar universal
No reason other then my internet at UK Lexington doesn't and won't prescribe pain MEDS. So when I asked him to send me to someone that could switch me from these patches to something else that's why I got this guy. I told him I forgot to change them. They fell off. They came off in shower. I often would forget to change them until withdraw , I guess is what was happening , started then I'd remember it had been three or four days and that's y my pain was so bad ! I would get freezing cold , I weigh between 101-112. So that's nothing new ! Or I wouldn't be able to use my hands and put on jeans or brush my teeth right. That takes my right hand which is the one that has rods and screws and severed nerves from top of my arm down to finger tips. They were mangled from the bone breaking. So I don't do many things well. Anyway now I don't even have breakthrough medicine. No arthritis medicine due to heart attacks and with anemia and two immune diseases having injections creates a lot of anxiety for me. I am just lost. I have never abused drugs. I don't drink and haven since I was about 25. It would start migraines which of course I can't stand ,so why do it right ??!!! Anyway there is no reason other then me wanting to be put on something else as to him taking me off the patches. Except now he is stopping my migraine MEDS and breakthrough MEDS and doing nothing to help with the downward dosing and my pain that's escalating because of it. He says he thinks the patches are causing my pain !  How can that be when I've had this far longer then the patches and I've gotten worse degenerating discs in my lower and now neck along with the immune and anemia that's been added the last five years. I don't know what to say or do. He's sending me for a bunch of mental Heath testing to see if I'm an opioids addict. By taking some written test.  I use a tens. I do my own meditation and sublingual therapy that I've used for years and I am not explosive nor suicidal. At least I wasn't ! But this is making me far worse.
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1855076 tn?1337115303
I think this is terrible.  I just found out today my pain doctor will be tapering me off all my meds against my wishes.  I had asked could we at least wait until I have a biopsy for an autoimmune disease next month and he said no.  I know he will taper me too fast and I am dreading it.  I knew he was kind of a jerk but he was within an association with other doctors I have.  His decision stems from two things, I think.  One is the upcoming changes in dispensing narcotics.  There are changes coming from.insurance companies and the government.

The other thing is I am being treated.for anxiety right now and he sees me as a liability.  I never had issues with my meds. The anxiety is primarily related to my son leaving for Marine boot camp in September.

I am only on a total of 60 milligrams of oxycodone a day.  My pain isn't well controlled due to increased joint pain because of whatever is going on with this likely autoimmune disease.

I've thought about trying to find a new pain management doctor but I don't know how easy that will bbe.

I will keep you in my prayers.  I hope your doctor does a very slow taper if he insists on taking you off.
Helpful - 0
1926359 tn?1331588139
I agree with Nursegirl.
Reading your post fills me with RAGE that you would be treated this way after all you've endured.  I've been through my share of serious medical traumas and bad doctor decisions but this is the WORST thing I've ever heard.

Honey, I am really sorry you are going through this.  It breaks my heart.  Do you have someone that can advocate for you?  I know that when I was super sick and desperate for help I could not advocate properly for myself.  My mom was there (trust me you don't want to mess with this woman) to fight for me and compassionate care.  We saw many doctors until I found a team that could help me and were qualified to do so.  Please, this is your life and your body and you NEED good pain relief.  I don't think you should be taken off the fentanyl right now AT ALL.  I'm not a doctor, but given your stomach issues and heart issues I understand oral medication is not an option.  Maybe there are injections and nerve blocks that would help you but at 200 mcg of Fentanyl you need a very, very slow taper.  Opiate w/d causes your heart rate to excel and you need that watched closely.  Clonidine is a BP med commonly used in opiate detox and would make the taper more comfortable.  I tapered from 100 mcg of fentanyl all the way down to 25 before I switched to an oral opiate- and I took clonidine the whole time.  However, I still took oral opiates for break through pain so it wasn't that bad.

You need and deserve the best care possible.  Please have your partner or a family member present at each dr appointment and fight until you find a doctor who truly understands your condition and can treat you as holistically as possible.

I don't know what else to say.  I feel for you honey and am here to support however I can...
Lu
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480448 tn?1426948538
Oh wow.

I'm so sorry for what you've gone through!

Honey, PLEASE find a new doctor right away, to take you off such a high dose of Fentanyl and leave you with no pan meds is barbaric.  Is there an addiction related reason why the doctor made this move?  Were you running out, or asking for early refills or anything?  I just don't get it.  It's insane.

Please keep in touch.
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Avatar universal
Well here goes. I've had two heart attacks. Last one at 45. Stent in my lad. Broken right arm with rods and screws. No bone grafting took. Nerves all severed from 1992-93. Hysterectomy at23 from cancer. Intestines severed at 13. No pain MEDS for that ever. My spine started collapsing after the hysterectomy as no hormones were given.  Ever.   I have MTHFR that causes blood clots. I had my stomach and intestines and eight umbilical hernias repaired after 1992 until 2008. Then infections continued and my spine collapsed more then ever. Doctors took away all migraine and arthritis medicine and after my intestines were cut and stomach sewed up and ulcers cut out I could only take liquid or patch medicine and bc of heart attacks nooooo arthritis medication at all. That's when pain got much worse and the fentanyl started to be prescribed. After 100 didn't work they added the second one. I've been on them seven years. I asked to be put on something else but now suspect that they are only going to use injections. This doctor thinks I can be medication free ???? I'm now 55. I have sever depression but antidepressants don't do a thing. I have MTHFR which not only causes clots but causes body to not convert any B vitamines into food or energy.
I'm at a loss as to what I can do from here ? I'm down to 125-150 every two to three days but this is only medication besides heart MEDS and antispasmodic that I take ?
Helpful - 0
8976007 tn?1413330650
no competent doctor would drop anyone from 200 mcg of fentanyl.  did the doctor just tell you 'we are going to get you off these pain meds' and you are freaking out about it???   not that i wouldn't be, cuz i would be, but i am sure
they have a taper plan in place.  some doctors taper faster than they should, but i cannot believe you will be dropped from 200 to nothing.  they would lose their license to practice.  if they are just going to work on getting you off all meds, it may be a blessing in disguise.  i am not even 24 hrs into detoxing off 50 mcg fentanyl, but at least my doctor gave me a small amount of another med to try and offset withdrawals.
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1855076 tn?1337115303
I tapered off 75 mcg of Fentanyl every 48 hours.  (I initially tried to CT off everything and I wound up dehydrated and admitted due to constant vomiting.  Not saying this to scare you, just want to let you know how important staying hydrated is.)  If you could tell us why you're on the Fentanyl and if you're on any other meds, you'll likely get more responses.

At the dose you're at, you really should taper.  Do you have any underlying health issues, like high blood pressure?  Do you have a primary care doctor that could help you taper down?  Were you using the Fentanyl as prescrined or were you misusing it?
Helpful - 0
1235186 tn?1656987798
Thats is a ridiculous amount of fentanyl. The opiates make the pain worse after long term use. Hyperalgesia- opiate induced pain.
You won't know you true pain level until you are off all meds for a few months
A long, slow taper is required.
Listen to the doctor and start your taper.
Praying for you,
Debbie
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Avatar universal
200 MCG of Fentynal!!!!  Holy crap!!!  My husband was on 125 and that was considered ALOT.

Only way to do it is you MUST taper. Go down each month. Once you get as low as you can it'll still be hard but not as bad as it could be. DO NOT stop cold turkey. It can be dangerous.

Now part of your pain it from the medicine. Is surgery an option?  What do you mean by rupturing?  
Helpful - 0
480448 tn?1426948538
You take 200mcg of Fentanyl?  What other pain meds are you on?  Did the doctor say you would be tapered?  Why did the doctor say he's taking you off the pain medications?  Were you running out early, or asking for early refills?  Are you getting ALL of your pain meds through just one doctor?

Some more info would be helpful, so we can give you some recommendations.
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