Hello,
In the past a few members did get some help/results by contacting their state reps , congresspersons etc.. It was medication or insurance approval related..

If you explain how you medication regimen is working for you and now you can’t locate a dr or pain clinic that will stay with the same thing, Just as you described here...and ask what is a person to do , can they help at all in this situation?

Or you can use the search - for older posts with representative, congressmen etc, the ones I know of were possibly back in 2008 or so...

Hello Grey and Welcome,

Your longevity with this disease and the amazing amount of function that you have are an inspiration. Most healthy people don't work out that much! You have clearly found things that work. I am sorry you are having so much trouble finding a new doctor. That is just terrible and is obviously is so imperative for continuation of living as you do. To refuse your current care that is working and recommend an SCS instead makes no sense to me.

Has your current doctor already retired? Do they have any colleagues that they recommend? you sound like a model patient! Doctors always know other doctors well enough to recommend someone and make some phone calls. Is a letter from your doctor an option, verifying your treatments and longtime compliance? something to put on your chart to aid documentation? The new regs on opiates are making things harder for prescribers and additional documentation may help. Is there an ombudsman in your state who can help? Sometimes there is one with the Dept. of Health.

Let us know what happens. The retiring provider scenario can be so hard. It is especially difficult with a disease that few really understand.

I am sending hugs and prayers for your continued care and health.

Welcome Grey ,
Just gonna jump in here to welcome you to the family.
I need to say after reading your post that we can thank the EPA and CMS for making it so hard on doctors to prescribe some of the drugs that will help.
It frustrates me to no end how the system gets so screwed up at times.
I know we're not suppose to inject politics here but this had to be said.

Welcome Greystreet.

Thanks for the feedback and the welcome. My doc provided a reference letter with the referrals. I thought the SCS recommendation was ridiculous. Especially since this doctor was a fellow at the Cleveland Clinic under Stanton-Hicks when Stanton-Hicks said no SCS. The only thing that has changed in the years since then is that this doctor is now at an independent office. I actually told him that I thought he was putting his own financial interest before the needs of the patient. He scoffed and told me that wasn't true. I said that it was, especially since he apparently forgot that he saw me as a patient when he was a fellow, several times as a matter of fact, and wrote the same prescriptions for me then as I am currently taking now. I told him the only thing that changed besides his opinion on my course of treatment was his place of employment and the probability that he shared in the profits of his new place of employment. Needless to say, prior to my comment, he didn't remember me, which is not surprising since the Cleveland Clinic treats patients like cattle, you're just a billing number over there. (This statement probably doesn't apply if you need serious surgical procedures or have cancer though).

Another thing that was weird, they HD me sign an opiate contract and had me do a mouth swab for saliva test 30 seconds before the doctor even saw me, which I thought was odd. I know that drug testing is not only to check for compliance, it is also a money maker. It is my opinion that he had no legitimate purpose for that test, especially since he didn't write any prescriptions. I am going to wait and see if they bill medicare for that test. It was completely unnecessary, and quite frankly, an invasion of privacy.

Ugh. That's about all I can say on that.

On the drug screen. I just went through that when I started PM. The contract is pretty standard. I balked at paying for a UDS since I was very specific about not wanting opiates. The nurse told me it was so they could have a baseline and as long as they weren't prescribing pain meds for me they wouldn't need to do one again. This one statement, having a baseline, made sense to me as far as documentation and I suppose so they know if someone is using illegal drugs. It does feel invasive but if they prescribed narcotics to someone also using other drugs there could really be a dangerous outcome.

Greystreet-- wow, what an ordeal you've been through! All to keep with the same regimen. Would your primary care doctor be able to pick up writing the scripts for you since you have a history of illness and have been taking these medications for so long now? I saw a rheumatologist some months back. Once she diagnosed me she said i could go to my primary care for follow ups for medication refills. But i know the fda reclassified some meds putting tighter controls on their availability, qty of refills, and how soon you can refill them. Its affected one that i've taken for years. But at least my primary care dr can still prescribe it. I would hate to start at ground zero w pain management because it seems like they all want to do injections which really run up my out of pocket expenses and do nothing for me.

welcome greystreet. soft hugs coming your way.

Thank you so much for the feedback