Thread: pain doc outrage!
07-29-2006, 05:55 PM #1
pain doc outrage!
I just wanted to share this.
One of the posts in this area---the one about the pain docs dropping IC patients has gotten me just angry and outraged. I think we need to do something about this so that this won't happen to us all. I wrote a Private Message to Jill. I was hoping she would have an idea of what we could do.
Here is a copy of the message I sent to her. Feel free to respond with any ideas as well:
First I just want to let you know that this site is a godsend. The support on this board is amazing and everyone is so willing to listen and offer advice--it's been so helpful.
What I'm actually writing about is a post I saw under the pain management area. One of the members "momw/ic" posted a message about her pain doctor dropping her and how a lot of urologists and pain doctors are posting that they won't treat IC and chronic pain patients anymore. This is an outrage and I have a feeling that may be happening to me too. I called my pain clinic to get a refill on my meds and I was told to call my pcp. My pain doc was on vacation and no one else would help me or tell me exactly what was going on and I just am worried about it.
The thing is something has to be done about these docs dropping and refusing patients! We ICers didn't ask for this and can't help what we have. We deserve respect and help just as much as anyone else. My father had cancer he is in remission now but the cancer had gotten in his bones and his back hurts from it and he has never once had any problems getting pain meds for his back. why are we treated like addicts just because we have IC?
Sorry to get on my soapbox but I'm just angry and outraged. We definately need to figure out what to do about this. I was hoping that you being so involved in all this you might have an idea of where to start.
Thanks."26 years old
Diagnosed with IC, Fibromyalgia, IBS, Facet Syndrome, Migraines, and OCD.
Meds: Norco, Neurontin, Cymbalta, Nulev, Promethazine, and Baclofen.
How I survive: Tens unit, heating pad, and ice packs.
In Omnia Paratus!
07-29-2006, 08:25 PM #2
Awwww...thank you so much for starting this. I have been wracking my brain trying to figure out what to do about this. I could just go on and get a new doctor but what if he does the same a year from now? The thought that possible in the next several years not even being able to find a pain doc who will treat IC is just not an idea I want to entertain. I have read other posts about this happening to people - it is a fairly regular occurance on here to read a post like mine. At least with me I have another month (it appears) and was not an immediate thing like it is so many times with other IC patients. It would be nice if there was something the IC community could do as a whole to make sure that medical doctors understand the pain that can be involved with IC. I thought about trying to get a series of letters to the editor published in different local papers that explain what IC is and how difficult it is to get pain care and encourage docs to respond when an IC patient comes to their office or ER and then also thank the docs who do take good care of their IC patients pain needs. I don't know if that would work or not but I am seriously thinking about it.
Any thoughts from anyone else? This is becoming a bigger and bigger issue and it scares me that sometime in my lifetime I may not have proper pain control for my disease.Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
DX: IC - November 2002 after hysterectomy
Interstim implanted March 2006 - died May 2011
Interstim replacement June 2011
Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
Docs: Pain management doc, urologist, family practice
07-30-2006, 03:28 AM #3
I know it's a long shot, but you might write a letter to your congressman and the medical licensing agency in your state. We need to have some changes in our laws in the area of medications to control pain.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
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