Survey Suggests Some Fibromyalgia Patients Getting Hit Hard by New Hydrocodone Rules


Founder of Health Rising and Phoenix Rising
Staff member
An online survey by the National Fibromyalgia and Chronic Pain Association suggests that some people with FM using hydrocodone to control their pain are getting hit hard by rules designed to cut down on illegal or abusive use of the drug. They were finding it more difficult to get the drug, having to spend more money to get in and in many cases are not able to get it at all. About a quarter reported experienced suicidal thoughts around their reduced ability to get pain relief.
  • Approximately two-thirds of survey responders reported inability to access hydrocodone-combination prescriptions. Patients prescribed the same medication at the same dose for many years reported that they were told their doctors would no longer prescribe hydrocodone medications for them.
  • More than 15 percent of the responders reported negative impacts on doctor-patient relationships.
  • Survey respondents cited higher expenses from more frequent doctor's visits, higher medication co-pays, greater transportation expenses for extra doctor's visits and travel to multiple pharmacies, and lost income related to inability to work due to pain.
  • More than a quarter of respondents (27 percent) reported suicidal thoughts due to being denied their hydrocodone prescriptions.
I used to get hydrocodone in three month supplies at 4-6 per day - I rarely used that much - only during major pain flares or if I had to do a lot of physical work (ie went on a walking tour in Europe. Having the Hydrocodone available to use at my discretion allowed me to manage my pain (which at the time was my major symptom. I was able to work full time and have a personal and social life (which went up and down with flare-age - naturally!).

I got a "strange" (meaning the docs couldn't identify it - not my first rodeo) bronchial virus in 2006 which had me in bed for 6 weeks (used saved up vacation time) then found myself at half previous function after that. Went to a Fibro CFS specialist (Dr Holtorf in Torrance CA) who continued my hydrocodone and added many other meds for now added CFS - I experienced much improvement in my health for the six months I could afford the off schedule meds.)

During this time I moved to Hawaii (for work) and had to get a local doc - in 2007 it was darned near impossible to get hydrocodone in Hawaii.

I went through long periods without. When I was finally (2 years later) able to get an rx I was allowed one pill a day. By then I was in constant flare, with pain, a new muscular weakness, and fatigue the likes of which I had never known before (and I thought I knew both pain and fatigue well as I'd had Fibro for 10 years by then).

Once I moved back to California things had caught up with Hawaii and I have not since had much in the way of pain relief. I get by. But I continue to function at 40 per cent or less of my previous 40 percent (still have to work full time but feel like I barely get by and in every other area of life I am so far behind I don't know that I will ever climb out.
I've been off hydrocodone for several years, now (I keep a bottle in a drawer for emergencies -down to two - but never use them for fear of needing them more at a later date.)

I keep reading that opioids don't help with Fibro and CFIDS - but I have never found anything that worked better. Fentynal patch did but made me hallucinate and itch so a no go, there.
ah well.
Be Well!
Elaine Schoepf in So Cal - Fibro/CFS for 22 years.

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