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.
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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