The current crop of FM drugs is hardly the cat’s meow but a recent study suggests that with FM drugs more might be better; i.e. combining drugs – perhaps in lower doses – might help both drugs to work better.
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Bob Graybosch
Lahaina, United States
Former occupation: Resort General Manager
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Although I am in the EDS crowd, we have similar issues to those who have CFS/ME and fibromyalgia–especially pain and fatigue (and dysautonomia POTS/NMH, and Mast Cell Activation Disorder and more). It is the pain part I would like to address. I see the groups of ‘approved’ drugs are the TCAs, the ‘pentins’ (Lyrica, Neurontin etc.), and the SNRI’s. In my EDS group we have done survey after survey and all of these drugs come in near the bottom of effectiveness or tolerability. The biggest patient survey to date has the top three drugs as opioids, medical marijuana, and Flexeril. I know there is a lot of controversy about long term opioid use, and a group of us has collected a mountain of research articles on the subject–specifically, claims that opioids commonly produce hyperalgesia, they are not effective for long term use, and if used long term, they often turn patients into addicts.
Our EDS site has over 44,000 members and by the number of patient comments, all of the above claims are false (excepting in a few cases). Unfortunately the research to back up our claims is spotty to non-existant at best. Currently, there is a lot of misinformation being disseminated about opioids and the statistics are being manipulated. Addiction and other horror stories make good news stories. Unfortunately, doctors want to see research papers to support their prescribing practices, and these aren’t common for long term opioid use in chronic non-cancer pain patients. Even the CDC says that the research to back up their ‘suggestions’ is lacking, although their ‘recommendations’ for many doctors is getting translated into ‘rules’.
Because of the opiophobic atmosphere these days, as a chronic pain patient, I am looking for what works, with the apprehension that my effective opioids might get taken away. At the moment I use low dose, long term Norco, plus Kratom and occasional tiny doses of Flexeril. In addition I use all the added coping mechanisms like heating pads, topical rubs, massage, visualization etc. I have gone down the entire ladder of pain control options, and these are the best for me, and many others like me. As I mentioned before, opioids, medical marijuana, and Flexeril happen to be the top three patient preferred drugs for pain.
So, doctors keep suggesting drugs which don’t work very well for most, are difficult to tolerate for many. Why can’t they ask patients? Almost all of us on opioids are not addicts, do not have so many side effects (excepting constipation) and some have been on them for decades…
Thank you for this important comment , Nancy B. I led a large FM/ CFS group for 13 years, and have many similar anecdotal accounts. Opiates are very helpful to many. And another observation is that they do not seem to cause fatigue, but actually give a boost in energy. I would further comment that the long acting opiates and Fentanyl patches may not be as beneficial as short acting meds. The long acting meds may cause extreme rebound pain, and may be very difficult to adjust dosages to the minimal amount necessary for controlling pain.
Also, opiates seem to be helpful in dampening some symptoms of dysautonomia. Too bad there is so little research.