Have MS and Chronic pain

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

HaZe_X
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 8/12/2011 12:20 AM (GMT -6)   
I was not sure where to put this, But I have MS, IM currently on Rebif for it..

Anyway Ive been having Chronic pain in my knees and upper legs. My Neuro said it was from the M.S, prescribed me Neuronin, I couldn't handle it, made me SICK! plus it did nothing for the pain.

Second note I had 10mgs of Percocet for my torn rotator cuff, been on it for a while now. Anyway, due to my Legs pains that I can't deal with I was taking (2) 10mg Percocets every 4-5 (roughly 60mgs in a 24hour period.) hours, which worked great, I could function fine.

I got referred to a Pain Management DR, just had my appointment on 8/10. I told him the dosage of the Oxycodone I was taken. Anyway He Prescribed me Lyrica, Been taking it before bedtime, but since I suffer from Panic Attacks since I started the Lyrica and my Panic attacks has worsened (Im taking more Xanax daily than I have been) (is that possible) Plus it didn't help a bit pain wise. He also gave me Butrans Patches 10mcgs/hour and 5mg of oxycodone for breakthrough pain, Im allowed to take those Max 5 per day.

Problem right now is I can't get these patches until monday 8/15 so Im dying in pain, 5mgs does nothing for me, I explained this to the nurse she told me to deal with.

ANyone here deal with anything similar? Or ever use these patches? I don't have much faith in them at all.

Im reposting this in the M.S forum also...

Advice, suggestions, personal experience would be great.

thanks all.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 8/12/2011 2:04 AM (GMT -6)   
Hi Haze, and welcome to HW. I'm sorry you're dealing with so much pain, and having communication issues with your PM team. Being told to 'deal with' is just terrible :(

I've not got any experience with the Butrans patches, so I don't know how they equate to your Percocets. Hopefully someone else will be along soon and can give you some advice.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 255
   Posted 8/12/2011 4:56 AM (GMT -6)   
You should be OK come Monday the Butrans patch, It is a very strong (opiate) narcotic pain medication. Just be very careful when using xanax with the patch and your 5mg oxycodone these are the drug combinations that people overdose from. I just love it when a medical professional tells you to just deal with it.Very professional. You should call your doctor and let him know what kind of people he is employing. They should tell you what you can do with the oxy's in the meantime to make you more comfortable. For the nurse to tell you to deal with it is not an option and I would make a big deal about that. Especially if you plan on using this doctor for any amount of time. Hope you feel better.
Beck
 

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 8/12/2011 8:27 AM (GMT -6)   
Requiem- I don't get the impression that overuse was an issue here, maybe a medication change with poor explanation?

Regardless, surely telling a patient to 'just deal with it' is extremely unprofessional regardless of the situation? If under dosing is occurring, then the doctor is causing the patient immense suffering through inadequate pain management - many of us have been there, and though I wouldn't wish chronic pain on anyone, there are some doctors out there who'd benefit greatly from some first hand experience of what they are trying to manage. If it is a situation where a patient is overusing medication, then to my mind it is in the doctor's duty of care to find out WHY this is occurring. Is it because they are not getting adequate pain relief and not sure how to raise it with their doctor...which comes back to the doctor's need to work toward pain management for their patient. Or is it because they are developing an addiction? In which case to me, being sent away and told to deal with it seems almost negligent... I would have thought a patient showing signs of addictive behaviour NEEDS closer attention, counselling, etc., before a small problem becomes an extremely large one. Just my 2 cents.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 8/12/2011 10:08 AM (GMT -6)   
I do absolutely agree with the poster that said that when the office told the OP to deal with it, that is unacceptable.

I have been told that in the past and have even been put on total bed rest to deal with the pain at the same time I have been told to deal with it.

I find this to be unacceptable and believe that the doctors should always make an appointment to see someone that complains of being in more pain than normal.

With the OP not being able to fill the patch until Monday - they should have upped the breakthrough medication that the OP is able to take to cover them until that Monday and then given a new script for a sooner fill date of the B/T medication. Of course, this is JMHO and I am sure that others will vary.

I have been in pain management since 2007 and have been on opiates since 2003, so I do have several years of experience.

Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.

HaZe_X
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 8/12/2011 6:29 PM (GMT -6)   
requiem_aeternam said...
If there is overuse of medications (both percocet and xanax) more than prescribed, most doctors and their staff take a very dim view of this behavior and equate it to a loss of control over the medications, and will frequently tell patients to just deal with it. While this may seem callous, the prescribing physician must insure their patients are not spiraling out of control with narcotic usage and will insist on taking the medications as prescribed, even if you run out early. This is to protect patients from both overdosing and becoming addicted. However, if it is an insurance issue of not being permitted to fill the script until a certain date (and not due to escalation of the usage of the drugs without physician authorization), then the physician's staff may call in a small supply of alternative medications.


My Percocet was given to by my ortho, been on and off since 2005, really started back on them maybe late 2009, early 2010. He knew what I taken, and had no problem in that aspect. Which is why eventually when the leg pains started he recommended me to a PM clinic.. Please read below...

NO-RELIEF said...
You should be OK come Monday the Butrans patch, It is a very strong (opiate) narcotic pain medication. Just be very careful when using xanax with the patch and your 5mg oxycodone these are the drug combinations that people overdose from. I just love it when a medical professional tells you to just deal with it.Very professional. You should call your doctor and let him know what kind of people he is employing. They should tell you what you can do with the oxy's in the meantime to make you more comfortable. For the nurse to tell you to deal with it is not an option and I would make a big deal about that. Especially if you plan on using this doctor for any amount of time. Hope you feel better.Beck


Actully I don't know If I can start the butrans patch, I read up on it and it states that people with lesions on their brains should not take this patch, which I do have lesions. Plus it says do not use if a recent head injury has occurred, well Monday (8/8) I fell and wound up with a mild concussion, 911 had to be called because I passed out and slammed my head. And another problem is my Xanax, I take 1mg 3x daily when needed, I have the .5mg dose, so I have permission on my script to take an extra .5 if needed, which sometimes I do.

Putting all that aside, the DR knew I could not get them to Monday, the nurse asked him she should at least give me 10mg of oxycodone so I can get some pain relief. He told her No, so she came to me with the "Just deal with it line"

Trudy2 said...
I do absolutely agree with the poster that said that when the office told the OP to deal with it, that is unacceptable.

I have been told that in the past and have even been put on total bed rest to deal with the pain at the same time I have been told to deal with it.

I find this to be unacceptable and believe that the doctors should always make an appointment to see someone that complains of being in more pain than normal.

With the OP not being able to fill the patch until Monday - they should have upped the breakthrough medication that the OP is able to take to cover them until that Monday and then given a new script for a sooner fill date of the B/T medication. Of course, this is JMHO and I am sure that others will vary.

I have been in pain management since 2007 and have been on opiates since 2003, so I do have several years of experience.

Trudy


Just being told do deal with it is unbelievable, the amount of pain I'm in, I spent my whole day yesterday lying in bed, in pain, didn't eat all day. 5mg of oxycodone provides nothing for me, 10mg takes the edge off. YOu would of thought they would of given a substitution for the patch, but nope. As it is I need to use Costco Pharm, they didn't have a release date from there supplier, so the only other pharm I could use is rite-aid, but they had to order and I have to pay 30% of the cost, so even if I was going to use the patch I would get the run around every month for those patches, its not worth it. Being cut down from 20mg to 5mg every 4-6 is nuts. Looks like you found a good PM dr, good for you!


So today I said screw it, Im taking what I need to function which is about 15mg,(Unlike the bottle says 1 every 4-6 for pain, max 5 per day) not total relief, but Im up and doing things. I'm going to drop this PM DR because a few things should not have occurred. I have a appointment with my PCP on Monday, maybe I can talk to him about what Im going through, maybe he can do anything for me, my DR is very understanding, best I ever seen.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 8/13/2011 1:25 AM (GMT -6)   
Hi Haze Welcome to HW, Our group is like a family as you can tell.

I'm so sorry that you are in so much pain. I understand about the 5mg oxycodone. I take it for breakthrough pain, and it doesn't do much of anything.

I wish you good luck at your appointment Monday. I sure hope he/she can help you with getting your pain under control.

The nurse telling you just deal is inappropriate and terrible coming from a medical professional. I've heard that MS can be very painful. You can find lots of information under the Chronic Pain 101 at the top of our first page that may help you.

Take care. I hope you're able to get some sleep tonight.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 8/13/2011 3:50 AM (GMT -6)   
Haze,
First, I am sorry that you are having increased pain, but you are making a few mistakes here that can and probably will result in you having difficulty in finding effective pain management if you continue doing them.
First, you are never supposed to take old prescriptions to treat "new" conditions or for conditions they are not prescribed for. The old percocet should NOT be taken now for the pain you are having currently. You should see your doctor to find out the cause of the new /increased pain and then let them suggest treatment options, and prescribe them.
Secondly, you are adjusting your own medication dosages, which a patient should NEVER, ever do.......no matter the reasons, or the amounts of increased pain, unless your current treating physician told you to take that amount of percocet, you don't increase/adjust a dosage on your own.......
Thirdly, if you were taking two 10 mg percocets every 4-5 hours, then you were taking somewhere between 80-120 mg of percocet a day, not 60 mg. That is a LOT of oxycodone, and a lot of tylenol a day......If these are the old type of percocet 10/500 , you are taking somewhere around 4000-5000 mg of tylenol a day, which is far too much tylenol! Tylenol under normal conditions,for someone who isn't taking it daily should never be more than 4 grams or 4000 mg and it is recommended to take far less than that if you are taking it daily for extended periods of time. That much tylenol can cause permanent damage to your liver!
Taking more xanax that you are prescribed is also dangerous, combined with the amount of percocet, can be lethal. Both medications slow respirations, your breathing rate and can result in your death. Please be careful and follow the directions on the bottle for the xanax.
Many patients new to pain management do not understand that the doctor must consider all of the medications that you are taking, along with your medical history to determine which medications and dosages are best suited to your physical condition and then adjust over time, depending on results.
Also Neurontin, is a medication used to treat nerve pain. It is started at a low dose, then slowly increased once the patient becomes adjusted to the medication. Most side effects are considered nusiance side effects, which means that they will slowly subside over a few days to a week or a bit more. You should always give a new medication at least a few weeks to a month before deciding it is helping or not , and to give your body a chance to adjust to the side effects. Most people find Neurontin and Lyrica very helpful when it comes to treating nerve pain once they become adjusted to it.
Right now, refusing to follow the directions of the treating pain management doctor, is not going to reflect well in your records and may follow you from doctor to doctor.
While I understand that you are in pain, there are rules that we, pain management patients need to follow in order to have our pain treated by pain medications. The rule of pain management is start low and go slow. The doctors need to start with the lowest dose possible and then see how the patient reacts to that medication, it's side effects, and then if needed , make adjustments in the medications and dosages. You can't just make your own dosages or increases in medications and expect that any doctor is going to continue to try to treat your pain.
I'm sorry if this sounds harsh, I don't mean it to be, but what your doing is dangerous , for yourself and for those doctors treating you. Non compliance will get you dismissed from any doctors care if you don't follow the rules.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

HaZe_X
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 8/13/2011 4:31 AM (GMT -6)   
mrsm123 said...
Haze,
First, I am sorry that you are having increased pain, but you are making a few mistakes here that can and probably will result in you having difficulty in finding effective pain management if you continue doing them.
First, you are never supposed to take old prescriptions to treat "new" conditions or for conditions they are not prescribed for. The old percocet should NOT be taken now for the pain you are having currently. You should see your doctor to find out the cause of the new /increased pain and then let them suggest treatment options, and prescribe them.
Secondly, you are adjusting your own medication dosages, which a patient should NEVER, ever do.......no matter the reasons, or the amounts of increased pain, unless your current treating physician told you to take that amount of percocet, you don't increase/adjust a dosage on your own.......
Thirdly, if you were taking two 10 mg percocets every 4-5 hours, then you were taking somewhere between 80-120 mg of percocet a day, not 60 mg. That is a LOT of oxycodone, and a lot of tylenol a day......If these are the old type of percocet 10/500 , you are taking somewhere around 4000-5000 mg of tylenol a day, which is far too much tylenol! Tylenol under normal conditions,for someone who isn't taking it daily should never be more than 4 grams or 4000 mg and it is recommended to take far less than that if you are taking it daily for extended periods of time. That much tylenol can cause permanent damage to your liver!
Taking more xanax that you are prescribed is also dangerous, combined with the amount of percocet, can be lethal. Both medications slow respirations, your breathing rate and can result in your death. Please be careful and follow the directions on the bottle for the xanax.
Many patients new to pain management do not understand that the doctor must consider all of the medications that you are taking, along with your medical history to determine which medications and dosages are best suited to your physical condition and then adjust over time, depending on results.
Also Neurontin, is a medication used to treat nerve pain. It is started at a low dose, then slowly increased once the patient becomes adjusted to the medication. Most side effects are considered nusiance side effects, which means that they will slowly subside over a few days to a week or a bit more. You should always give a new medication at least a few weeks to a month before deciding it is helping or not , and to give your body a chance to adjust to the side effects. Most people find Neurontin and Lyrica very helpful when it comes to treating nerve pain once they become adjusted to it.
Right now, refusing to follow the directions of the treating pain management doctor, is not going to reflect well in your records and may follow you from doctor to doctor.
While I understand that you are in pain, there are rules that we, pain management patients need to follow in order to have our pain treated by pain medications. The rule of pain management is start low and go slow. The doctors need to start with the lowest dose possible and then see how the patient reacts to that medication, it's side effects, and then if needed , make adjustments in the medications and dosages. You can't just make your own dosages or increases in medications and expect that any doctor is going to continue to try to treat your pain.
I'm sorry if this sounds harsh, I don't mean it to be, but what your doing is dangerous , for yourself and for those doctors treating you. Non compliance will get you dismissed from any doctors care if you don't follow the rules.
Sandi


How did you figure it was old percocet? 10/325 Read what I posted? My last fill date from my ortho was 7/25/11. Secondly I wasn't taking more that prescribed by my ortho. And Like I said roughly, taken roughly every 4-5 hours, that could mean every 5hours also. MY max oxy intake was 60mg, which again I stated. Didn't always mean 20mgs at a time, always when I first woke up though I did, it varied throughout the day. And if you compleated reading my posts you would also know my Xanax script and doses. Tried Neurontin, made me sick, did nada for me. Lyrica increased the severity of my panic attacks, nor did it help my pain, So I stopped it. Ive been on and off opiates since 2005, which I think I stated in all my posts.

Also I couldn't give a crap about this PM dr, I'm dropping him, as in not going to him any longer. If you read my prior posts you don't just tell a patient to "deal with it" when it comes to pain..He "Should" have known my history, my Ortho and MS dr gave him all my papers, he knew what I was taking in oxycodone, it was right there in my records, thats if he read them, plus I even said it to him when asked.

Like I said I don't think this DR really cared about my medical history. #1 I had a mild concussion Monday (8/8), passed out, 911 had to be called. Walked into DR's office on Wednesday with 2" bump on forehead and the bridge of my nose all swollen. I think that indicates and head injury. Right in the brochure it says do not give Butrans if you have had a recent head injury, well duh, look at me, or was he blind? didn't care? didn't know what he was prescribing?

Post Edited (HaZe_X) : 8/13/2011 3:51:27 AM GMT


painsnbody
Regular Member


Date Joined Aug 2009
Total Posts : 30
   Posted 8/16/2011 3:58 PM (GMT -6)   
PM changed greatly since 2005. Even if you were on and off during those years. Times have changed just recently actually. DR. are running from the FEDS not because they are doing wrong but because they are being harassed.
Dr. are feeling the pinch everywhere. They are scalling back just to keep them off the radar Unfortunatly at the pataint expense.
 
 
 
 
 

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 8/16/2011 9:07 PM (GMT -6)   
Haze,
I realize that you are upset and angry because of how you were treated by this PM doctor, but getting angry or upset at people who respond to you, trying to help you, isn't the answer.
I took what you wrote on the first post of this thread and responded according to what you wrote. It doesn't negate what I said, that a patient should NEVER increase their dosage on their own. It doesn't matter what the reasons are, if you haven't cleared it with your doctor, then you shouldn't be doing it.
Each new doctor that you see, is going to prescribe to you what he feels is the best choice for your medical condition. He may not agree with the dosages or the medications that you were prescribed by another doctor, and so may change the medication entirely or the dosage.
I don't think that the office staff should have told you to "just deal with it", as they are not trained medically to offer that advice.  They should have referred you to the nurse for the doctor or given the doctor your message.
As for when you filled the "old" prescription, really is kind of irrelevant to what I said, taking more than prescribed of any medication with tylenol in it is dangerous. Too much tylenol can and does result in liver damage, sometimes so severe that a liver transplant becomes necessary. I would hate to see that happen to anyone. 3 grains or 3000 mg is the maximum daily dosage for anyone taking tylenol long term, and it recommended that the patient stay even lower than that.
"Second note I had 10mgs of Percocet for my torn rotator cuff, been on it for a while now. Anyway, due to my Legs pains that I can't deal with I was taking (2) 10mg Percocets every 4-5 (roughly 60mgs in a 24hour period.) hours, which worked great, I could function fine."
This is where I got the 80-120 mgs a day. If you are taking 20 mg/4 times a day (every 5 hours), that is 80 mg. If you are taking the same dose , 5 times a day, or every 4 hours, that is 100mg and if you take it around the clock, it is 120 mg. I assumed that you weren't taking it around the clock when I came to those dosages.  Your initial post didn't say that you were taking the 20 mg dosages only in the morning. 
I'm sure that the doctor did know what he was prescribing , but also took your current medical condition into account before he prescribed butrans. I'm also pretty sure that he evaluated your mental status before writing those prescriptions. The questions that he asked most probably were done to evaluate your mental status, whether there was any confusion or disorientation when he saw you and saw none so he prescribed the medication.
If you don't feel that any doctor is the right one for you, then you always have the right to change to another doctor.
What I was trying to do was to help you to not continue to make mistakes that might compromise your ability to get proper pain treatment from here on out. If you don't feel that anything that I said, applies to your situation , you are free to disregard it.
 

 
 

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 8/23/2011 12:25 PM (GMT -6)   
hi haze,  i also suffer from ms and many pain issues. i have primary progressive ms. ive been fighting this monster for 20+ years. walking funny and refusing to go into a wheelchair has cost me a few painful ailments, most noticibly osteoarthritis and bursitis, both trochanteric and ischial. i never know whether to laugh or cry when they tell me not to sit for more than 10 mins. at a time. i cant stand for more than 5 mins. at atime. so i am between a rock and a hard place.  i am new to dealing with pain management drs. being under treated and being treated at a snails pace. i look my drs. square in the eye and ask them why!!!   and please tell me the truth. one dr. answered me honestly.  i do not have my own practice, i have to answer to the corporate powers.  i have developed a pt. routine that starts slow and passive to warm up(drs. dont understand that stretching does nothing for folks with ms). movement is the key to loosening those stubborn stiff muscles.  i would like to give the medical proffession something to deal with. i am typing with tears in my eyes time to get medicated.     be well as you can  ppm guy(ppm is for primary progressive ms). bye
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 9:16 AM (GMT -6)
There are a total of 3,005,839 posts in 329,270 threads.
View Active Threads


Who's Online
This forum has 161807 registered members. Please welcome our newest member, Wimp7755.
259 Guest(s), 9 Registered Member(s) are currently online.  Details
SG091, cashlessclay, sebreg, zack36, bebbles, 61Impala, ks1905, InTheShop, Anna7ella