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Avatar universal

What rights do I have as a patient to determine which types of pain medication I is best for me

I have carpel tunnell syndrome, DDD and was diagnosed with Fibormyalgia while in hospital for depression just over a year ago. I tried many things for pain that simply did not work at all end or the side effects very disturbing.  Just after Christmas my Dad brought  me to his place in Florida hoping that the warmth, change etc. would help.  While there a met a Dr. who also stayed in the same complex for the winter and was an aquaintance of my Father's.  A very long story short, he helpled my prescribing me Oxy Contin.  Within a few weeks, the pain was managed very well and I became my old self again.  I was back and forth a few times and my family were also happy and releived to see this major improvement.  My family Dr. now in Richmond Hill ( Canada ), will not perscribe this for me.  I understand the controvery with Oxy Contin, especially of late with Michael Jackson's demise being associated with Narcotics.  I do not abuse this medication.  I have always taken it as perscribed.  Now, back on Lyrica, the pain is not managed and ironically enough, Lyrica makes me feel very high.  Do we as patients not have any "rights" to say "This is the medication that works well for me, and I would like to have that".  It is so damned DEVESTATING to know that there is a far more effective medication that works well and being denied it due to other's misuse.  Any knowledge of what I can do would be so appreciated.
Thank you,
Linda
11 Responses
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Avatar universal
I am a 61 yr old male also with a wicked case of FM.  I have taken morphine for a few years.  It doesn't kill all the pain but it helps.  You couldn't have said it better; just having it available is a great stress reducer.  
Another point.  I spent years as a peace officer, specializing in drug cases.  I was considered by the courts to be an expert.  Now that I take a narcotic I realize that most of the "known facts" about morphine are B.S., largely propagated by the DEA.  The real tragedy is that people that could be helped by strong pain killers go to doctors that are scared off by legal scrutiny.  They often make up outlandish stories in order to avoid prescribing narcotics.  If you can find someone willing to put politics aside you may learn some useful information.  For example; people who suffer chronic pain don't get high, they don't become addicted and they can reduce their dose or even stop, often without suffering any negative symptoms.
Helpful - 9
Avatar universal
I am sorry if I offend, but Dr Rajgopal you sound like so many other physicians that I have seen who always blindly support the other physician's decisions no matter what.

I'm 58, male, and have had severe fibromyalgia for the past 6 years.  One of my doctors ( a GP ) refused to prescribe any kind of pain medication for me and told me that only young girls "catch" fibromyalgia.  I went to another doctor.  The second doctor asked me what the first doctor had told me - then supported his position on young girls catching fibro. The third doctor (neurologist) told me that the pain was due to rebound from taking OTC pain meds, and to stop taking anything for pain.    
My wife and I kept a detailed notebook of my examinations, test results, and imaging studies.
The eigth doctor finally took the time to read over all of the accumulated documentation of  lab results, CT and MRI scans, EMG, cardiac workup, corotic artery ultrasound scans, facet joint injections, botox treatments, neurological exams, etc., and diagnosed fibromyalgia with chronic fatigue.  She started me on percocet and avinza to address the pain, and worked with me to management pain, improve exercise, nutrition, sleep, and to reduce stress.  I am now feeling better than I have in 6 years and have slowly ( and voluntarily ) reduced the amount of pain meds to half of what I began with.  Now, I only take the percocet a few times a month when I feel really bad. Just knowing that I have it available, if I need it, actually reduces the stress and worry about having another flare-up.

Linda, there are two points that I want to make here: 1.) we heal faster when not in pain, and 2.) If your doctor isn't helping you then go to another, and another, and another, until you find a doctor who understand and who cares.
-Rick
Helpful - 7
606078 tn?1247264553
  I have to agree totally. I was DXed 2 years ago and have gone through the list of meds that are said to be very helpful for Fibro pain. Well, it might be, but for me it was a very unsatisfactory experience. My Rheumy put me on Savella 3 months ago, the side effects were horrible! I finally said that enough was enough.

  My internist has helped me more than the Rheumy ever could. A year ago he put me on Norco to help with the joint pain, I have severe osteoarthritis and it has been a lifesaver for me. I am 54 years old and the last thing I'm concerned about is addiction. I take the Norco when needed only. But it helps me to be able to function on a daily basis.

  My question for the doctor is: why do we as chronic pain patients have to suffer because of those who take pain meds for recreation? Is it possible that doctors aren't able to see trhough those who are faking pain? Some days my pain is off the charts, and my internist knows that when I tell him that I am suffering he believes me. I really feel for those who have doctors that refuse to help them function because of politics. It is a shame.

Angel
Helpful - 3
908504 tn?1269103899
I agree with all of you. I am 63 and because of a serious auto accident I have Fibromyalgia. Some days are good and some days ( like today ) are horrrible. I have tried all the NEW drugs and had horrible side effects and they did not help the pain. I have taken Norco and Soma for a few years now and have never used more than my prescription is for. I also believe that people who are in pain do not abuse drugs and the ones that do abuse drugs will just use anything they can get. It's too bad that the medical society does not punish the abusers instead of making it really hard for those of us that are in pain.  Namaste, Teri
Helpful - 2
Avatar universal
Good point!  
My wife and I own our own software business.  So I have a choice: try to program while in pain, or take the pill be a little fuzzy but keep on working.  If I don't work, we don't eat - simple as that.  I have absolutely no desire to get high, especially since more than the daily dose of narcotics reduces my ability to work.

I've been on daily Avinza (24 hour morphine) and Percocet PRN for breakthrough pain for about three years.  Occasionally I stop the Avinza for a week or two and rely upon Percocet so that I can have a few normal bm's.  Withdraw is a little bit uncomfortable - like having a touch of the mild flu for a few days, but having the fibro pain return is much worse.
  
You are right about the BS surrounding long term use of prescription narcotics for pain.  My major concerns about Avinza and Percocet is 1.) chronic constipation (I take Miralax every day) and 2.) liver damage due to the acetaminophen in Percocet (I try not to exceed a max of 1600 mg of  acetaminophen in one day).  

A combination of generic Prozac, Welbutrin and Elavil help a lot too ( and, in my opinion, are more effective and less expensive than Cymbalta or Savella ). Large amounts of fish oil, Vitamin B complex, and MSM also help.  No longer is medical information limited to a few people.  I research everything before swallowing any pill.

-Rick

Helpful - 2
Avatar universal
MEDICAL PROFESSIONAL
Hi,
There are many limitations with the use of Oxycontin eg .- it is habit forming , should not be used with alcohol : Dangerous side effects or death can occur when alcohol is combined with a narcotic pain medicine , causes serious results in- asthma, COPD, sleep apnea, or other breathing disorders; liver or kidney disease; underactive thyroid; curvature of the spine; a history of head injury or brain tumor; epilepsy or other seizure disorder; low blood pressure; gallbladder disease; Addison's disease or other adrenal gland disorders; enlarged prostate, urination problems etc. It is not because of someone’s misuse that you are being denied the medicine , but because it may have many side effects for you as well . Your doctor wants to avoid any untoward incidents . But if you feel that that is the only drug that could give you relief , please discuss with your doctor in detail and he may allow you to use the medicine after a complete medical check up and   a controlled dose prescription to avoid drug dependence and other adverse effects . Of course you as a patient have all the rights to use any drug you want but it is always a patient’s benefit the doctor thinks about first . He feels , some pain is worth tolerating than serious effects on health .It is not denying the rights of a patient but keeping his well being in mind . Please discuss everything openly with your doctor . Hope this helps you . Take care and regards !

Helpful - 2
Avatar universal
Hi Everyone,   I just wanted to say that my routine is Cymbalta 2 times day,  Neurotin 600mg 3 times day, Voltaren Gel applied 3 times a day to knees and ankles/feet/elbows,wrists and hands, Excedrin extra strength ( I take 2  two times a day) along with an aleve in the a.m.  Also a 15mg remeron at bedtime.     I still have alot of pain,  my Dr. will not give me Norco, as I detoxed off of it in February and so I guess he thinks I can do without it now.  I took it for 5 years !  I think I am smart enough to detox again if need be.  It was my choice to do this anyway!! no one elses' !   Having a ton of blood work done next week, all my blood checked.  I was dx'd with Lupus in 2003 and fibro/cfs last year.   wow,  I wish all of us good luck in finding answers.  I too wish my health insurance would cover me better, but alas, this is High Risk Insurance and that is all I can afford (who will cover me.!!)

E
Helpful - 1
Avatar universal
You are right about the pain meds. They just dull the edge of the pain.  Tell me more about checking hormone levels - which hormones? Estrogen, thyoid, pituitary..  there are lots.  Tell me more about the electromagnetic imbalance idea.  I'm a computer and electronics guy!
BTW- Mayo doesn't accept my insurance (Aetna)

Now that we have all vented, let's compare notes to see what thing work.
What about Low Dose Naltrexone ?  Has anyone had success with Lyrica or with various supplements?  Let's expand this blog to other FM/CFS sufferers and compare our what works and what doesn't work notes.  I'm sure we can help each other find new ways to ease the pain.

Good Day,
-Richard
Helpful - 1
849257 tn?1238783222
I understand all of you. I suffer severe fm and chronic fatigue. Add those names to a list of many others. I closed down two businesses worth millions. I have gone through all the medications normally prescribed for fm and still working on it. I have tried duragesic,morphine, and oxycontin just to name a few with no help. All the pain killers seem to do is make the world go away but not the pain. I am blessed not to have an addictive personality. But, as all of you say, we are not after a high or addiction that a lot of the drugs get named. Most have bad side effects, in fact I label some the devil drugs. I have found some muscle relaxers and neurotransmittor meds help. Antidepressants for fm affect all people differently. Some work well for some people and then the same med can be horrible for the next person. Every time something drastic has happened, like a wreck or something tramatic, your problem accelerates. Nerve endings tend to stay wide open which will cause a chain reaction of many things. A big thing I found, HAVE THEM CHECK HORMONE LEVELS ALSO! It does help. Also, NO MATTER WHAT, STAY OPTIMISTIC! It is so important. Exercise doesn't have to be getting on a treadmill. Walk from one end of the house to the other. Just move. The more you mourn, the more you hurt. The doctors think I have more than what I have explained since I have more symptoms than normal. They want me to go to Mayo Clinic. Some day we will figure this out. Oh, by the way how many of you have problems with watches, computers or other mechanics. You have an electromagnetic imbalance that will mess these things up.
take care, marsha
Helpful - 1
Avatar universal
You have all been really helpful!  I will continue to look for a Dr. who sees beyond the politics etc.  Good luck to all of you!
Helpful - 1
1243848 tn?1268460072
A related discussion, I found the Solution to all my pain was started.
Helpful - 0

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