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Old 06-11-2012, 08:04 PM   #1
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Pain clinic closed & can't find anyone to treat my pain

I've been an opiate pain patient for 12 years. It's been a long road. I'm better now than I have been, but I take morphine CR 100 mg. twice a day and am allowed up to 6 morphine IR 30 mg. I also take Nabumetone and baclofen. I've had a lot of improvement taking DL-phenylalanine (DLPA) In the last year I started taking DLPA and was able to go from 4 doses of morphine CR 100 mg. daily to 3. I have just recently (within the last 2 weeks) taken the step myself from 3 doses to 2. I had some withdrawal symptoms trying to get the time evened out, but seem to have it under control. When I got sick, I realized later that ALL my hormones crashed. Estrogen, progesterone, TSH. DLPA evidently boosts the hormone that has to do with endorphins. Over the years they've discovered spinal stenosis that I was born with and Fibro. I also have occipital neuralgia and post hermetic neuralgia.
I recieved a letter a couple of weeks ago that the hospital system my pain clinic belongs to is closing the clinic. My Dr. Has been on leave since the beginning of the year and the office has been WAY paranoid. Instead of a UA once or twice a year, they've had me do one the last three appointments in a row. There's nothing to find illegally, I do as I'm supposed to. I just want to go about my life and not be in pain.
I don't know what happened with this doc, but I can't find anyone to treat me. A receptionist today said they will not consider taking patients from that clinic and the second clinic I was given will only take me on if I have injections, not medicine management. The original clinic sent a letter and advised to have records sent to our primary care provider, but when I called there, they said they are not pain management and will not take care of me. I'm thinking I'm going to have to wean myself off this morphine. I can't even write it without tears. I am at a loss.
I picked up my scripts for this next month to be filled in a couple days, so I have some to work with, I just don't know how to titer off safely without making myself sick and totally screwing up my business.
Any advice is appreciated.

 
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Old 06-11-2012, 09:23 PM   #2
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Re: Pain clinic closed & can't find anyone to treat my pain

Hey Kimmer,

God I hate when Dr.s screw up our lives...

Try to get copies of your medical records, by law they cannot refuse you those. You will be able to find a new PM Dr., it may take some time and doing, but there is one out there that can treat you.

Sounds like this Dr. was doing some things not quite legal, and made a bad name for himself, which is making other Dr.'s nervous about taking on his patients. You have your good record going for you. You've been doing this many years and have been a good patient before this Dr. and during, and that will help you.

You may very well have to agree to see a PM that starts you on a different treatment plan and build back into yours, by showing them your willing to do what they say and having your records to show that your meds were working and with the variance of types of meds you were able to reduce your narcotics significantly. Hopefully theres a Dr. out there that has a heart and a brain and will listen to you. It's not unusual for a PM Dr. to want to start you on there own treatment plan and not just take over your own, so don't be too disheartened by that.

Is your current office giving you any amount of prescriptions or medications to last you until you can find a new Dr.? I'm not surprised that your referring Dr. won't take over your care, they are most likely not Certified by the FDA, nor do they have the expertise to even know what half the medications your on do or how they work. At least they care enough about your well-being to admit that and not treat you. If you do find yourself forced to taper down off the narcotics, you might go to your GP or PCP to get on a schedule, they can do that and help you taper safely. Your LA meds and BT meds are the same thing, so you won't have the hassle of having to taper off of 2 narcotics.

Generally a slow taper is safest, but it depends on how much medication you have available. The other meds your on may have some wd issues also. The addiction/recovery Board on this site has Stickies at the top with lots of information on tapering and things that you can use to help get through withdrawals, OTC meds, common sense items, things you can do.

I'm really sorry your being hit with this. I know sometimes it's hard to think clearly when you go into panic mode. Have you contacted the Hospital to see what they recommend as far as referring out to new PM Dr.'s in the area?

Hang in there.

Kat

 
Old 06-11-2012, 09:26 PM   #3
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Re: Pain clinic closed & can't find anyone to treat my pain

Welcome to the group! Sorry you are dealing with this. I'd call back the doctor and tell them the responses you got from the two clinics and your primary doctor. In addition to that, I would research other pain clinics in the area. I have been in a similar situation in that I had a very tough time finding a pain clinic who would see me and who would consider taking over my considerable amount of meds (most said they would cut me down on them or take me off of them, yet they didn't have any other ideas). Be very persistent with this.

I'd also ask your doctor about taper instructions for if you need them, but if it comes to it, I'd see how you respond to a small drop (such as 10%) and take it from there. I'd taper as fast as you can tolerate with minimal symptoms; only you know what that is. A 10-25% of the dose a week drop is a common number.

I really hope you don't get there though. For one, folks are usually on these meds for a reason. Also, its tough to get them back if you have got off of them (they could see it as you went X months without, so why do you need them?).

It really varies on what med you take, how much, for how long, and how your body reacts. Getting off the last bit of meds is usually much worse than cutting down by the first part. Even if your primary doctor could not prescribe, they could likely counsel you in this and give you adjunct meds if needed like Clonidine. Best wishes.
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Old 06-13-2012, 08:59 PM   #4
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Re: Pain clinic closed & can't find anyone to treat my pain

Hi, thanks very much for your replies and just letting me vent. I've got a very supportive network of people who care about me and listen, but I think unless you're in the situation that many of us are in, having a pain issue serious enough to take opiate pain meds, and then having persons of power be able to hold your salvation over you is a place you really can't know until you are there. A lot has happened since my first post. Or I should say, a lot of nothing has happened. If I repeat myself at all, sorry in advance. I was instructed by the clinic being closed to have my records sent to my primary care doctor. I signed the paper to have that happen, and then called to talk to a nurse about how to proceed. She informed me that they were not pain specialists, and would not be managing my pain meds and gave me two clinics to call. I called the first, the receptionist said 'I don't want to be abrupt, but our clinic is not considering seeing any patients from that clinic'. The second said they would do procedures, injections, but not med management. I called my insurance company, got a list of pain management docs. I had 2 people in the same day say they liked a doc that is not related to either of the two large hospitals in the area. (Good thing I'm thinking) They said if I had my records sent from my old pain doc and had a referral from the primary, they would look at my records and consider seeing me. I called the primary doc today and was informed the hospital admin has sent a notice that nothing is to be done concerning patients from the closing clinic, including referrals. Huh? So, I called the doc that wanted the referral, asked them if I was able to get the pain clinic closing to give a referral, would they accept it? They said they doubted I would get it, but they would accept it if I did. I called the closing clinic, 'we don't give out referrals, we're a specialty clinic. You're primary needs to do that.'. AAACK!!! THEY WON'T!!! She asked if I would like to speak to the office manager. Yes, please. I've not heard back today. So, I called the primary and informed them I wanted the fact that they wouldn't even give me a referral in writing because if there turns out to be a class action lawsuit, I'm in, and I need documentation. This produced a call from the office manager. She at least sounded like she was upset about this situation, the fact that people can't just stop these meds, and said that she called in the higher up admin partly because of my situation and the reason they put a hold on referrals is because even with a referral, no clinic in town will touch these patients. We are talking about 1,800 to 2,000 pain patients here. My next plan is to file a complaint to the board of medical examiners. I'll write it tonight. It's bad enough I'm getting the run around, but I'm in a fairly good place right now. I know there are patients out there that don't have what it takes to take care of themselves, let alone deal with this garbage. It's disgusting. It makes me so angry. Today is the first day in two weeks I can finally talk about this without crying. I've had panic attacks about it and am at the place now where I'm getting angry. I'll try to be clear and polite in my correspondence, but will be clear in that the physician I was seeing may have done some shady things, whatever they were, but that has nothing to do with me or my medical situation. There is no reason what so ever that I should be penalized by that clinics' actions. I've been an opiate patient for 12 years, have had numerous UA's, whith clean results, or I wouldn't have been treated to this point. Geez. I'll let you all know what goes on. This is just sick and wrong. It cannot be allowed to continue.

 
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Old 06-13-2012, 09:51 PM   #5
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Re: Pain clinic closed & can't find anyone to treat my pain

Kimmer,

It may not help, but I would write a letter to that same effect to the Pain Doc your trying to get in to see and include it with you medical records. How can they penalize you if the other Dr.'s aren't giving referrals, that's pure madness??? I would also write a letter to the DEA Licensing Board similiar to the complaint letter your writing to the Medical Board. I would get as much "paper" out there as possible. Do you know who your local Congressman is in that District, I'd get a letter to him also. This type of situation is just ludicrous and should not go un-noticed. Does your local news have one of those segment types like "how to help the people" or "local people done wrong" I'd be calling them to.

The more noise you make....the more people might listen.

Hang in there,

kat

 
Old 06-14-2012, 08:54 AM   #6
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Re: Pain clinic closed & can't find anyone to treat my pain

I am shaking my head in wonder, as to how this could happen to somebody. I'm very sorry to hear about the run around you are getting but my only suggestion is possibly getting a new family doctor and explaining everything to him and see what they recommend. Best of luck with everything and as my fiancee always says things have a way of working themselves out.

 
Old 06-14-2012, 07:25 PM   #7
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Re: Pain clinic closed & can't find anyone to treat my pain

Wow is all I can say... I am incredibly sorry you are being put in such a ridiculous situation.

My first reaction was to say you should call the state board to file a complaint, then maybe the DEA, and I can't think of who else, but it sounds like you have your head on and are thinking sharp. What I might suggest would be to ask if you have seen any other docs recently or on a semi regular basis. My PM took me without referral (though he had seen me once 4 years prior on a consult), but I had at least 4 docs who were willing to refer me if needed; my PCP, my orthopedist (who I've only seen twice), my former psych, a neurologist who is just a personal friend, and though it doesn't really count, my dentist, and I also have a former girlfriend who is an MD who was willing to refer me. I guess what I am saying is you might want to get creative with who you ask for the referral. if you have seen any practitioner at least enough for them to possibly trust what you tell them, explain exactly what happened and that you need a referral.

Are there no PMs near you who don't require referral? There are two very large practices near me (central TX) with about 10 PMs each, then there are numerous private practices as well. Both large group practices will take patients without referral if you send them at least a token piece of your medical history indicating the need for pain management. My PM asked for an X-ray report I had recently had as a formality for taking me as a permanent patient, even though the X-ray was negative / normal.

Best of luck
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Old 06-21-2012, 04:24 AM   #8
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Re: Pain clinic closed & can't find anyone to treat my pain

Recombinant made good suggestions. Do you have any other doctors treating you intermittently for problems?

I like the way you are thinking about all the other patients being left behind from that clinic. Your letters might be the salvation for many of them who are unable to fend for themselves in this disaster. Some of them may be unable to write letters, to figure out who to call and what to do; they may lack necessary insurance to go to new PCPs or specialists for referrals, and lack the functional ability to call 8 offices a day explaining this terrible situation to five people in each one.

I really feel for what you are going through. I think it is shocking and scary and sad; it seems irresponsible of your PCP not to give a referral, and a month of medication while you sort through this mess and wait for an appointment to get in to another place. I salute you and have so much respect for you, for how you've identified and cared about how less fortune patients are affected - while you're in such a bad position yourself.

You might try finding an internal medicine specialist and see if s/he might take over your pain management while you search for another PM specialist.

 
Old 02-18-2013, 09:39 PM   #9
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Re: Pain clinic closed & can't find anyone to treat my pain

I'm so sorry for the frustration and anxiety that comes along with losing your PM like this It's a real pain in the rear to deal with.

As lousy as it is for you and all of the other patients that are affected by this, I can guess that the reason other PM clinics don't want to accept you as patients is because of the potential backlash from the previous doctor possibly being investigated by the DEA?

I know that my PM is very picky about who he accepts as a patient, and effectively does a medical "background check" on every patient that even wants an appointment, on top of the standard contract and UA's. He does this because the DEA is really breathing down the necks of anyone who specializes in pain management and anyone who prescribes narcotics.

I referred a neighbor to my pain management doc, and he wasn't accepted as a patient because his previous pain management doc was being investigated by the DEA, and my doc told him that he just can't take any chances because any little thing could turn an investigation to him and he had to protect his business.

It sucks, and it's not fair .. but I imagine my pain doc isn't the only one that considers these things when taking on new patients.

I hope you find a great doc that will take the best care of you, and I do think sending letters to anyone and everyone that could help is a wonderful idea!

 
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