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From Our Readers: Comments & Suggestions – 7/13/16

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Opioids are used by many people with fibromyalgia as one way to treat the unrelenting pain of the disease.  With the recent release of the CDC Opioid Prescribing Guideline and the National Pain Strategy Report, many readers responded to these various articles. 

Most Effective Treatment for Fibromyalgia Among Least Used Says Report

SURVEY: Should Opioids Be Restricted for Chronic Illness?

ACTION ALERT: Telling Your Chronic Pain Story Now is Important
 
Cort Johnson’s article about the National Pain Report’s fibromyalgia survey prompted a response from IanH:  In the absence of any curative treatment, I believe that cannabinoid analgesia should have a lot of funding in respect to FM.
 
rakiethebird responded to our survey with this comment:  Already I know of two instances where chronic pain patients were "cold turkeyed" off their opiate prescriptions for no reason other than their clinics decided to use the Guidelines as an excuse to GET RID OF THESE PATIENTS. It would seem the CDC is more worried about death by the very small overdose/misuse in this cohort than they are about the suffering caused by withdrawal, or suicide from people losing the only viable means for controlling relentless overwhelming pain. Rather like the so-called "pro-life" movement, they only worry about human life at one stage and are quite happy to let people suffer for the rest of their lives.
 
If the CDC were sincere, there would have been an honest effort to supply viable alternative means to address the patients' needs. This just cuts them off, sets the adrift to cope with all the issues that their opiate prescription solved like ability to work and sustain themselves and an ability to live a quality life. Alternatives like LD Naltrexone have been stopped mid-trial cycle because there is no profit for Big PHARMA. Medicinal marijuana is illegal in most states, despite being federally legal.
 
As a chronic pain patient who has been on a stable light opiate protocol for 20 years, I now live in fear of my next renewal appointment. Thanks for the additional stress, CDC, I guess you don't care about exacerbating pain symptoms by introducing fear and anxiety in the lives of 10 million people either.
 
EvieVNartin “can feel and sympathize with the writer.”  I am an almost 76-year-old female who has had chronic pain dating back to my thirties. First, I was diagnosed at the age of 29 with cervical spine arthritis after sustaining a fall on concrete and hitting the base of my head. I was prescribed devices, gone to chiropractor and acupuncturists as well as physical therapy all to no avail.
 
Unbeknownst to me, and to my surprise, at the age of 73, I was found to have scoliosis of my lower spine as well as lumbosacral steniosis. Fortunately, I had gone to a doctor who felt so sorry for me because I had difficulty climbing up on the examining table. I was given a prescription for Oxycodone. That, together with Gabapentin has alleviated the pain and discomfort but after taking one dose, I would need to take another dose after five hours. By that time, I was using a cane to ambulate although walking and standing for long periods were out of the question and so had to resort to the use of a wheelchair.
 
I followed up with my surgeon who thought the next step would have to be surgery after four consecutive epidural injections failed to relieve my pain but at this point in my life, I am reluctant to have any invasive procedures done. At my age and in my present living conditions, all I want to be is comfortable for as long or as short my time in this life lasts. The surgeon wrote me a prescription for OxyContin which my pharmacy informed me would cost $100 copay for just thirty pills (my prescription was written for sixty pills) which I decided not to fill and therefore am on Oxycodone.
 
In addition, I was given a sample of Lyrica 75 mg for a two-week trial which worked very well but when I presented my prescription to fill, the pharmacy informed me that it was not covered by my insurance.
 
The abuse of the drugs people have died from should not prevent those with "legitimate" chronic pain. If people with addiction obtain the drugs illegally and as a result die from them, we chronic pain sufferers should not be penalized.
 
Doctors, on the other hand, should be more vigilant and discerning about who they give prescriptions to.
 
Red_Lawhern is a 20-year care giver and supporter of chronic neurological face pain patients including his wife who talks with hundreds of people in pain every week, many of whom rely on opioids, and concludes that IT IS TIME TO STOP THE WAR AGAINST CHRONIC PAIN PATIENTS!
 

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Cymbalta
Cymbalta continues to be a major topic of discussion among our readers.
 
cfstara wrote “I have taken Cymbalta off and on for approximately 8 years. Anytime my doctor and I have decided to take me off of the 60mg dosage, he has always given me 7 days’ worth of the 30 mg and then I would stop.
 
The first time I was out on the medication, I had forgotten to take it for a couple of days and physically felt like I was dying. But luckily my withdrawal symptoms when I've tapered from 60 to 30 were not that bad. I had to start taking the 60mg again last year because of depression and anxiety after a heart attack. I am now currently without insurance so I started weaning myself by taking one pill every other day for a couple of weeks and then stopping. Not the best way but without insurance, the meds are too expensive.
 
The worst side effects I am experiencing are nausea and the light headedness or "brain-fog". While these withdrawal symptoms are bad, I feel lucky I haven't had experiences like some other people. I will say that while taking Cymbalta it did help my depression and it also actually helped relieve horrible hot flashes…
I have taken many anti depressants over the years and found Cymbalta the best for me but getting off of them can be rough.
 
blondiegirl2287 finds it “comforting to see that someone else has experienced this… Thank you for sharing.”
 
Aliyana asks that we “wishher well” as she stops taking Cymbalta.

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Remember, we encourage you to discuss all of your medications and symptoms with your healthcare provider. 
 
 

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