Help for someone without options

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XenaBard's picture
Last seen: 3 days 22 hours ago
Title: Member
Joined: 10/18/2015 - 8:53am
Help for someone without options

I'm in a tough place. I've been dealing with serious spinal problems for more than a decade. I've been treated with a Fentanyl patch (100mcg) as well as Methadone for breakthrough. I've never had my patch dose adjusted, and I cut back on my break through meds on my own. Actually, I was allowed to take up to 6 MSIR 30 mg tabs per day, but I stopped them because I didn't like the side effects. I should also mention here that NSAIDS caused a near fatal hemorrhage, so they are off limits for me. Anyway, we looked into an alternative to the MSIR, and my provider put me on Methadone for breakthrough since my insurance would not cover anything else.

I was able to take three Methadone tabs per day, but I could go a week or more without taking any. In the summer, I have less pain. The winter can be very hard because cold weather causes misery. This past summer, my long term provider was replaced (without warning) with an MD who is extremely conservative. Before even setting eyes on me, she decided to stop my breakthrough meds. (All of her patients got their meds cut significantly. I was told outright they wanted to weed out people who "didn't belong there." That scared the heck out of me, I'll tell you).

I declined having the Methadone weaned since I don't take it all that often. So she stopped it cold. No problem. But a few weeks after I had a miserable couple of days. Next time I saw her, I asked her how we would manage break through pain. Her answer: "You shouldn't have any with Fentanyl." (Wow. So much for individual patient care). And then came the implied threat: "If you aren't getting the bang for the buck "we" expect, we'll just stop the Fentanyl altogether."

This is putting me in a terrible position. I never take meds I'm not allowed to. I never have cheated, nor have I taken more medication than I should. Fentanyl has been a miracle for me. Before the Fentanyl, I was put on long acting morphine. Even on that, I could not get out of bed to get to the bathroom without help. Thanks to the Fentanyl, I'm able to ambulate pretty independently, mostly with a cane, sometimes with a walker. (I'm only in my 50's, so I resist using a walker). My Home Health Care worker who comes in every weekday to help me with cooking, shopping, the standard activities of daily living. Thanks to the Fentanyl, the weight I gained after I became ill literally fell off. (At 5'6", i'm about 115 pounds).

I know the pain management people are feeling political pressure. I get that. I understand they don't want to risk their licenses to treat pain issues. But this leaves me with no options. Am I supposed to lie when my pain level shoots up? If she takes away the Fentanyl, I literally have no quality of life left. Right now, I'm facing another New England winter. I have no relatives alive, and no support system. My partner left me when I got so sick. I can't afford a car, so my chance of putting together a social network are between zero and zip.

Oddly, I'm not depressed. (I asked for Cymbalta years ago to help with my pain management and that really seems to stave off gloomy feelings). However, I am realistic. The one constant in my life is: pain.

Honestly, I never thought I'd be left without support. Or pain control. Since I don't cheat and never have asked for increased med dosages, I assumed (wrongly, I see now) that if I needed help to control my pain, it would be available to me. They are really telling us we are on our own. What choice do we have beyond checking out if it gets to be too much?

Liz's picture
Last seen: 5 hours 22 min ago
Title: Moderator
Joined: 12/30/2008 - 8:41am
Welcome to healthrecovered

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dilauro's picture
Last seen: 20 min 5 sec ago
Title: Moderator
Joined: 06/16/2008 - 9:41pm

Everything you are talking about is centered around pain medications. There is so much more to a total pain control management plan.
Everyone always has options, you just need to explore them , and perhaps several times.

Take a look at The Blend This concept helps thousands of people manage their pain levels.

Ron DiLauro Spine-Health System Moderator
I am not a medical professional. I comment on personal experiences.

William Garza
William Garza's picture
Last seen: 2 hours 55 min ago
Title: Member
Joined: 06/19/2008 - 5:23pm

Youe part of a very large, very loving and giving community now.
Each and every one has, or will walk in your,shoes.
Your no longer at this alone.
Give the little Spiney Village on the web a chance.
Keep that chin up!