Seriously?

This is one of those times when I put my opinion “out there” and risk the potential back lash from the fibromyalgia community.

I was killing time during a bottle feeding and ran across something very disturbing. I found an entire community of fibromyalgia patients who have joined together to offer advice on what to do when your doctor has decided to NOT prescribe, or re-prescribe, pain medication.

On this site, there are lists of doctors to contact who prescribe pain medication with little argument, advice on faking symptoms or exaggerating pain levels, going to different doctors at the same time, so on a so forth.  I hate to list too many examples here and have someone actually do them!  I also refuse to list the website because I don’t want to promote it.

Ok…

There are reasons your doctor has decided to avoid pain medication. Why are you convincing other fibro patients that their doctor’s advice shouldn’t be followed? WHY does the mention of an exercise program, or alternative treatment send people running to a different doctor? 

Not only was I mad when I found this web conversation but, more than anything, I was completely discouraged. 

Goldenrule.com says the following about narcotics….

“People should not take narcotics for more than a few months, since physical dependency is a high risk factor in taking them. Patients may feel more pain and have decreased pain tolerance if they stop taking narcotics abruptly. Stopping the medication by gradually decreasing the dosage can prevent severe withdrawal symptoms. Mental dependence on narcotics is not likely.

Common side effects of narcotics include drowsiness, leading to an inability to safely operate machinery or drive. Itching as a side effect from narcotics may indicate the need to change the dosage or the type of narcotic. Fluids, exercise and a high-fiber diet can help prevent constipation from narcotic medications. Less common but more serious side effects require medical attention. These include sweating, shortness of breath, nausea, decreased hunger and vomiting. An overdose can cause a slow heart rate, chest pains and blue lips”

Please re-read the first sentence!  No more than a few months.  Right now, fibromyalgia is a life-long condition.  We are not meant to take narcotics for the rest of our lives. 

Now re-read the side effects…

How do these out-weigh finding an alternative to treating fibro, such as exercise, or physical therapy?

YES!  I take an over-the-counter pain med periodically.  I’m not saying I’m better than any other fibro patient because I choose alternative treatment, and I’m not saying my fibro isn’t as bad as anyone else’s.  I, too ,have the days where it hurts to walk, hurts to sleep…just plain hurts!

 I feel I have been lucky to be guided from the beginning of my diagnosis to turn to alternative treatments and I intend to continue following that advice.

When I talk to other fibro patients and they are so zoned out they can’t focus, or they are wobbling when they walk because they are taking something too strong my heart breaks a little.  I know some don’t realize it’s happening to them, and I know that some are genuinely taking them at the advice of their doctors. 

I get it….

However…

I feel discouraged because I feel like this is one of the major reasons we haven’t had advancements in research, or advancements in understanding the condition when fibro patients are completely rejecting any new treatments and relying on pain medication alone, regardless of the side effects or lack of improvement in their symptoms. 

I feel like we, as humans, look for the quickest fix and I completely understand why!  I have trouble finding time in my schedule to exercise and take care of my fibro (especially with a little one), but I know it’s not an option for me not to! 

I could harp on this for pages and pages but I’m going to leave it at this…

If you are involved in these online conversations consider this…What if a doctor was genuinely researching Fibromyalgia and wanted to get a feel for how patients discuss the condition with each other online.  What if the doctor found this website?  Would he/she feel their efforts for research would be wasted?  Also, there are a lot of doctors who treat patients looking for pain medication like “criminals,” so-to-speak.  Don’t you think this could be part of the reason why?

Please consider the consequences of these public conversations, you never know how it may impact the potential for a possible cure!

 

 

 

 

 

 

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5 Comments (+add yours?)

  1. Katarina
    Jun 04, 2014 @ 20:02:30

    I follow an ‘integrative’ treatment program, with a neurologist and naturopath. I strongly believe in patient directed care. If you have FM and have been to a doctor that dismissed it, or told you there’s nothing to be done, or only referred you to a shrink, then of course it’s crucial that you find a doctor who is knowledgeable about the condition. Do your research, like the national fibromyalgia and chronic pain association http://www.fmcpaware.org/fibromyalgia/treatment.html. if your doctor doesn’t recommend these options, s/he doesn’t know their stuff! So yes patients should help each other out by suggesting good docs. So I don’t necessarily agree that the doctor knows best. On the other hand, faking symptoms or only trying to get opiates is definitely problematic and yes probably contributing to the criminalizing of opiate taking patients. The only effective one for long term use in FM that I’m aware of is tramadol / ultram, which is so mild there is no association with addiction (it works as a mild opiate and antidepressant). So… Advocate for yourself but do your research… Alternative treatments are crucial. Qi gong is more effective in clinical studies than lyrics!

    Reply

  2. Julie Ryan
    Jun 04, 2014 @ 21:16:55

    No backlash just some thoughts. I’m with you on avoiding pain meds as much as possible. Mostly they don’t work on Fibro related pain. they just don’t. Add to that that you will develop a tolerance and need more and more and reach a point that you can’t get more and your pain will just hang out at this higher level because of the pain meds. Avoid them as long as possible.

    That said. I get that there are people who do need them. In many cases it’s co-morbid issues along with Fibro that lead to that need. Or they’ve done their time avoiding them and finally reached a point where they had no other choice. There are some doctors out there that just DO NOT do pain meds. Period. In those cases, if your doctor has just stopped giving you what you need to survive you find a different doctor that will listen. However, you don’t fake symptoms or doc hop, because that just creates a worse situation.

    The people you describe in this group are not Fibro patients, they are addicts.

    Reply

  3. kittybelle103108
    Jul 28, 2014 @ 05:12:10

    Another thing to be aware of is that chronic pain sufferers – like us – do NOT show the same addiction symptoms to narcotics, nor the same pain relief/”high” that non-chronic sufferers have. The issue – and probably one of the reasons the group exists, as annoying as it may be – is that SO many doctors out there assume that if you say, “I’m having pain,” and request a narcotic-level pain reliever, that you are merely an addict and/or exhibiting drug-seeking behavior. Because of this, it becomes less and less easy for those of us who DO need the narcotic-level pain relief on an as-needed, not-all-day-every-day basis to get a doctor to listen to us, and not automatically assume that we’re just looking to get high.

    A perfect example of that is that my (now-former) doctor refused to write me for narcotics, even when I could no longer take NSAIDs (they’d eaten a hole in my stomach), and the traditional go-to is Tramadol — which caused only side effects and didn’t relieve my pain. After me all but begging her, she would write me a “month’s worth” of the weakest narcotic available – 30 tablets – with no refills, so that EVERY time I needed more, it had to go through her office so she could track how often I was refilling the prescription (as if my insurance company wasn’t monitoring me enough with it, and puzzled why I was only get a “week’s worth” at a time, in their book). Her statement to me was that she “didn’t want to start” down the narcotics path because she was afraid I’d get addicted. I had to take in the reams of “chronic pain sufferers don’t develop an addiction” research for her to believe me, for her to write me for the lowest level of narcotic possible, and then refuse to refill it on the month that I had a flare and had to take them three times a day for a week (even though the prescription allowed me to take them every 4-6 hours, which meant up to 6 a day). She has now quit practice, and I’m in the process of trying to find a new doctor, who I’m sure I’m going to have to go through the argument with regarding my current prescriptions, and then have the, “No, I’m not a drug-seeking patient,” discussion, too.

    But when your husband is written for the STRONGEST narcotic out there short of IV drugs… and the effect on your Fibro pain (when he lets you have one) is for it to just take the edge off, while the same drug left him a drooling mess… that has to say something.

    Reply

    • jenfibrofighter
      Jul 28, 2014 @ 12:34:22

      Hi there. Narcotics make me nervous for anyone. I know they are necessary at times, but I still advocate for alternative treatments like light exercises, physical therapy, holistic medicine, etc. I would love if you shared your findings about how chronic pain patients don’t develop an addiction (not to argue with you, just because I’m curious). I myself have had problems with addiction to lyrica and Naproxen.

      Reply

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