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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, June 27, 2013

The Case of Opioids vs."Brain" Meds


When I finally got a diagnosis and pain meds which allowed me to be more socially active.  OMG: did we really wear our hair this crazy!  (Sorry about the bad scanning!)


I've always been defensive about my use of opioids, otherwise also known as narcotics.  Rarely has anyone outside of my immediate family known that I've taken a certain opioid since the late '80's, all because I know that opioids have a "bad name."  It's always, "Oooo!"  An outside-the-family person takes a pause, and later whispers "narcotics!" to someone else, with most often a judgmental voice, thrilled to know this juicy bit of gossip.  To make things worse, commercials on TV for certain medications proclaim that the medication they're touting is "a non-narcotic" medication, making it very clear that their new medication is far, far superior to a narcotic and that narcotics are completely and totally undesirable. Talk about propaganda (or brainwashing). 

As anyone who has read much of my blog in the last month or so knows, I'm still in withdrawal from my Cymbalta, which I'd taken for only three weeks.  Recently I wrote a post saying that I hoped I'd "brnever" bring up Cymbalta again. I was so optimistic that I was almost out of Cymbalta-world - I most certainly didn't expect yet another week of withdrawal.  

I've been extremely desperate to know why my withdrawal is taking so long.  "Existing" has became so unbearable that I interrogated my rheumy to the point where I thought it was a distinct possibility that he would cry "uncle" - or kill me, whichever opportunity came first.  I wanted to know why I had such a severe and prolonged withdrawal for the first time in a decades-long medical history with medications to treat my CFIDS/ME/CFS, fibromyalgia symptoms and the comorbidities.  I wanted to know why the doctors in the hospital (back in April/May) were so adamantly opposed to opioids and so pro the "brain" medications.  After all, Demerol and Ultram have never given me any problems - as an example.

Three of the most annoying symptoms I'm still having trouble dealing with are: 


  • I still break out in huge sweats - and I'm tired of my very sticky skin and changing bed linens
  •  my eating is completely out of control (this is a problem with the limbic system, if I remember my college psych courses correctly - joking!  Of course I ran this by an authority!)
  • the newest thing to have hit me EVER!: if my mind wanders and I happen to think about a slightest embarrassing thing in the past, I become anxious with my heart beating madly, again with the sweats, a decidedly unsettling feeling that makes me wonder what lengths I'd go to just to get rid of that feeling.  This is completely and totally new. Just thinking about something that is slightly upsetting - but which so often has a humorous angle to it -gives me this sort of anxiety. There's the time I wanted to wear a red checkered dress instead of a white one to a huge piano recital and I argued vehemently with the Mother Superior as well as my mom that red would do. I was so wrong. Or when I think about the time I was upset with my mom because she wouldn't allow 9-year old me to have an Indian - yes, a real live Indian who knew what he was doing - throw an hatchet at me while I stood against a wooden wall, on a real live Indian reservation.  Sheesh!   OK...I know, I'm getting off topic. (But I hope you liked the Indian hatchet story: hubs has said often enough, "time to get over it, honey!" to which I reply, "my name is 'Irene,' not 'honey.'"  Yeah, OK. Enough of the dynamics in this house as well!)


Here are the relevant facts I took away from the "interrogation."  It feels as if rheumy and my GP are working overtime to rescue me from those doctors who preferred "brain meds" over opioids.  They tried their hardest to brainwash me yet again that I'm "self-medicating" or addicted to my pain meds.  The "brain med" doctors have scarred me by saying I'm not physically ill but being dramatic. I don't need any wheelchair or cane to walk around.  The dizzy/passing out things can be conquered.  "We" can get your insomnia in order with this (mild) medicine.  Right...!  And I'm going to go to Antarctica to check out the penguins.

What I'd like these doctors to learn:

  • Narcotics have been around a very long time and their effects and side effects are well-known and understood.  The "brain meds" like Cymbalta, Savella, and Lyrica are incompletely understood and new dangerous side effects are being discovered all the time. Just look at any TV commercial for examples.
  • It's unknown to what extent the brain meds cause long-term problems.  For example, what effect do they have on a developing fetus?  True, a woman taking pharmaceutical opioid (not the crud on the street) when pregnant may deliver a child who is prone to withdrawal but that can be easily addressed in the hospital before the baby gets home. Fetal malformations from opioids are few and far between, if present at all.  With the "brain meds" we have no idea.
  • Opioids do not give you an artificial high if taken as directed.  I have never felt a high at all.  Luckily for me, I don't like the feeling of a high and that's made for a life of rarely having a drink - or wanting to take too many pain meds. 
  • Cymbalta and such actually change your personality.  I'm STILL not back to laughing.  I am chuckling a bit.  Child #1 came by last night and what would usually have had me laughing my fool head off, found me saying instead, "now that's funny" with very little affect.  I've had a personality transplant which has found me saying to hubs,"I'm sorry I'm such biatch, but I can't help it."  And today I was in this mode:" I'm sorry I keep blaming everything on the Cymbalta, as if I can't take responsibility for my own actions!"  In other words, I'm tired of apologizing at every step.  And do you realize how shocking it is to apologize to hubs?  He's ready to start filming these (for me) humiliating situations. 
  • Taken as prescribed, narcotics are extremely safe. On the other hand, taken as prescribed, anti-inflammatory pills, many of which are over the counter, kill (and I mean KILL!) thousands of Americans each year because of bleeding ulcers and other such complications, as Dr. C.M.Wilcox described in 2006 in the journal Clinical Gastroenterology and Hepatology.  Mind  you, this has happened and continues to happen despite the anti-inflammatory medication being taken properly.  And we are afraid of narcotics?  
  • Taken the wrong way, narcotics can be dangerous but that should not concern legitimate patients who follow their doctor's advice and take the narcotics in the proper manner.
  • Opioids do not mess with your neurotransmitters the way the non-opioid, newer medications do. That is not to say that no one should take medications like Cymbalta, Savella or Lyrica.  However, one should not be conned into thinking that these alternatives to opioids are safer or even more effective for chronic painful conditions. 
  • If  you read the package insert that the FDA requires pharmaceutical companies to include with every medication, you won't find the terms, "suicidal ideations," "suicidal actions," and the like for any opioid!  There are a lot of warnings about what can happen if you take opioids the wrong way, but taken as prescribed, opioids do not lead to suicides, as opposed to other medications.  
  • If for some reason or another, you need to stop taking opioids it is much easier to "detox" (if you even need detoxing!).  On the other hand, withdrawal from "brain meds" such as the Cymbalta, Savella and Lyrica is all too often extremely lengthy and pretty "unpleasant."  (Yawza" to the "unpleasant." Such an understatement.)  So please tell me, why are opioids undesirable while other meds preferred?  

Why, pray tell, are opioids not prescribed for patients with chronic pain?  Why are they prescribed only begrudgingly by some doctors whose intentions are good - I must say - but who have been influenced by the propaganda against the legitimate use of these effective medications?  

Here are some of the considerations which need to be taken into account. 

  • It is far more newsworthy to report a narcotic/opioid overdose concerning a celebrity than to report how thousands of patients suffering from chronic pain get relief from opioid medications.  
  • It is not the fault of the medication or the manufacturers of opioid medications that these meds are too often diverted in the form of  being sold on the street, kids raiding their parents' medicine cabinets for crazy "pharm" parties (and the like) or taken in excess by patients who, for many reasons, want to escape their reality. 
  • To put a personal spin on this: I've taken Demerol for almost 30 years.  My doctors (some have retired, some have moved) have always prescribed x amount of pills each month.  Over these years, I've taken a rather high amount of Demerol when I was almost deadly ill.  HOWEVER: other years when I've felt not as ill, I've barely taken any Demerol at all. With my forgetful brain, out of sight is out of mind.  When I don't need a pain med, I don't even think about pain meds.  But those years when I've been sicker than a polar bear in a desert, I've almost pill counted each day because it was the only way I could get through a day.  But that is NOT addiction.  That is being dependent on a medication which helps you or makes your life bearable, no different than insulin for a diabetic, digitalis for a heart patient or antibiotics for someone who has an infection.  
The brain is extremely complex. In fact it's so complex that many in medicine call it "the final frontier," including the Nobel laureate, Dr. Eric Kandel.   Doctors and researchers are discovering new things about the brain and neurotransmitters at a pretty fast rate. 

Is it any wonder then, that manipulation of the levels of these neurotransmitters in the brain can cause dire consequences for some patients who are very fragile?  Disruption of the balance of neurotransmitters like serotonin, dopamine, and norepinephrine can cause behavioral changes and physiological changes which may persist even when the "brain meds" are discontinued. 

I've never ever had a problem with stopping any medication, including Ultram, Demerol, Xanax and countless other medications.  This messing with the brain scares me.

But I do want to say this.  I am happy that we DO have Cymbalta, etc.  Some patients get real, absolutely necessary relief from brain meds.  My point is that we cannot and should not throw out the opioids because they happen to be medically politically incorrect.

As always, I hope everyone's feeling their best, only better!  Ciao and paka.




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6 comments:

  1. Amen! I hate political correctness in every form. Now I've learned of another area where people are intimidated/brainwashed into it.
    Take care, Irene. Feel better.
    Martha

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    1. Thanks so much, Martha! As always, you manage to lift my spirits yet again. Hope you're doing as well as can be. xx

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  2. I've taken Ultram since May 2003. It's not a narcotic by DEA standards - it doesn't cause craving nor do you build a tolerance. BUT, you will go through a hellish withdrawal if you reduce your dose substantially or stop taking the medication cold turkey. I accidentally did it to myself 2x and then have had it happen with each virus when I couldn't keep any medication down.

    I truly believe that our brain chemistry (as Fibro patients) affects how long it takes for drugs to completely clear our system in terms of side effects once we've discontinued the medication. As I mentioned at another time, I took 2 low-doses of Atenolol (a beta blocker) and spent 3 days in bed with hypoglycemia.

    Not even pharmaceutical companies completely understand the mechanism of Neurontin or Lyrica - they readily admit that fact. Both have bizarre side effects including swelling of extremities and blurred vision. Lyrica was worse for me and MUCH less effective so I went back to Neurontin. For me, Neurontin is a miracle drug. I know it sounds melodramatic but, it's true - I wouldn't survive without it. I was able to cut my dose down quite a bit while on Savella. But, the blood pressure spike and hypoglycemia caused by Savella meant I had to discontinue it & increase Neurontin again. Unlike other classes of drugs, after the first few doses, the dizziness & lethargy is manageable. No tolerance is met. You don't feel loopy. Once the drug starts work after a dose, the horrendous pain melts away. All my 18 Fibro spots are still very tender but, doable. The nerve damage pain is the pain for me that is mind-blowing. The Neurontin helps more than I can possibly describe.

    But, like all drugs, there are side effects. Besides swelling of extremities and blurred vision, it has caused me dental problems and I'm at a much higher risk of developing glaucoma.

    Like you discussed in another recent post - all meds that we take as Fibro patients are complicated with many having the same side effects. Furthermore, our brain chemistry is different which further complicates the matter. There are some PA's that are very knowledgeable and some doctors that are elitist, God-wanabees who have no clue. For me, the choice is that my meds are managed by very capable, knowledgeable doctors who keep up with the latest research and who take side effects very seriously.

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    1. I've not forgotten this comment, Melissa. I started writing a reply and realized it was about the same as a post so that's where I'll address comments - hope you don't mind. You always have so much food for thought, which I love. Thanks!

      How are you doing? How much longer 'til you get some migraine help? xx

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    2. Hi Melissa! (I'm going with my reply. Who am I kidding when I say that I'll write a post on it! ;))

      This is why I'm so shocked by the Cymbalta detoxing. I have gone off meds "cold turkey" and it's never bothered me before. Beta blockers, Ultram. Neurontin from 7 capsules a day to 1. Many meds. And I've never gone through anything like this. If I did indeed have detoxing going on, it was certainly never noticed with all the other stuff going on in my body - and brain. Even Lyrica was nothing - except for the "slight" problem of suicidal thoughts. It caused some problems while taking it (!!!), not helping at all, but really, no problems getting off. And I'm not going to even go into the Chantex.

      These new meds really do so much to your brain and that affects everything - a lot! Talk about commitment and dependence on a medication. But that's great if it works for you. And many are helped. But getting off? Oh my!

      The one time I had a problem? I'm almost embarrassed to say. I went off ALL meds at once, about 20 meds, I believe. Now THAT made me sick as a dog. But it was when I was really into holistic stuff and was doing REALLY well. Everyone was horrified when they found out what I'd done from old, new, usual, unusual, etc, doctors to holistic people. Everyone. I was a mess - and it took a while to figure it out b/c I didn't think to mention this to my doctors - and inadvertently undid months of hard work - not to mention the huge medical expense out of pocket. Needless to say, I went back on most meds. And had to promise everyone I'd never do something stupid like that again. But even THAT never came close to the detoxing/withdrawal I've gone through w/ Cymbalta.

      I do like Neurontin except for the weight issue. I think of every 5 lbs I gain and envision a 5-lb sack of sugar or flour attached to me. (That's a lot of sacks hanging off of me!) Between pain and the indescribable "fatigue" (it's much more than "fatigue") my body simply can't handle all that extra weight. Yet I need the Neurontin, etc. It's a fine balancing act.

      Why do you have dental problems w/ Neurontin? Is it from the dry mouth? xx

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