Pain patients being denied their medication!

Specialties Pain

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I have heard of this happening all over the US- but I didn't think it would happen to me!

My old Dr. who was also a pain management specialist retired and my new Dr. who is not a Pain management doctor calls me in and tells me that the CDC has a new recommendation that no person be on long term opioid management and he plans to take me off my opioid by the end of the month. This is a regimen that my old Dr and I came to after trying every non-narcotic option and it's working. I only went to opioids when the pain became so excruciating that I couldn't get out of bed, was not sleeping and had reached a point of near suicidal depression. For the last year I've been as close to pain free as I have ever been with no issues what so-ever. But I agreed to try it his way and see if I could

Manage without the opioid

Caveat being he will send me to a pain management doctor if the pain returns. Then I find out the co-pay for the PM evaluation is a thousand dollars! I sent my doc an email stating that since going off an effective regimen was not my idea - I expected my insurance company to eat the cost of the eval.

Then I read the CDC recommendation which said nothing about opioid never being used for chronic pain but rather they should not be the first line treatment.

I feel totally defeated that I have to let this doctor who is half my age and probably has no experience with chronic unremitting pain. Tell me all this without even doing a proper history and physical.

Specializes in Psych, Addictions, SOL (Student of Life).

Just an update. I am seeing a pain management specialist 1st week of August. And my insurance waived the $1000.00 co-pay at my request. When I spoke to the nurse on the phone who gathered some history and told her what I had been taking she stated "Is that all? No Marijuana or ETOH?" None of that I said and she said it didn't seem to be unreasonable - but they would do a through assessment and see what they could do to help.

Wish me luck

Hppy

3 Votes
Specializes in Psych, Addictions, SOL (Student of Life).

So Pain management specialist did no agree with my PCP. She did a very through history of my pain, my medical conditions and past treatment. She told me that my PCP taking me off my low dose opioid was inappropriate and that she was putting every thing back the way it was. Caveat was that I would have to take a monthly uds to show that I was not using any other substances. Sounds fair enough to me.

Hppy

3 Votes
Specializes in Urgent Care, Oncology.
hppygr8ful said:
So Pain management specialist did no agree with my PCP. She did a very through history of my pain, my medical conditions and past treatment. She told me that my PCP taking me off my low dose opioid was inappropriate and that she was putting every thing back the way it was. Caveat was that I would have to take a monthly uds to show that I was not using any other substances. Sounds fair enough to me.

Hppy

I see pain management tomorrow for 3 bulging discs with nerve impingement and moderate to severe osteoarthritis in my SI joint along with Sjogren's. Just found all this out last week and it is a lot to handle as I'm only in my early thirties and don't know what to expect.

I am glad you were able to work this out. I really don't think people understand pain until they've been through it.

1 Votes
Specializes in Hospice.
hppygr8ful said:
So Pain management specialist did no agree with my PCP. She did a very through history of my pain, my medical conditions and past treatment. She told me that my PCP taking me off my low dose opioid was inappropriate and that she was putting every thing back the way it was. Caveat was that I would have to take a monthly uds to show that I was not using any other substances. Sounds fair enough to me.

Hppy

This is really great news. I have been following this thread to find out how you made out. Seems you managed perfectly. I am gratified.

1 Votes
Specializes in ICU, Telemetry, Cardiac/Renal, Ortho,FNP.

Hmm...You are right that the CDC recommendations are speaking mainly to acute pain. Chronic pain is a different management issue and individualized. However, that being said, let's get real...in this climate asking your PCP to manage narcotics is not a good idea either for you or them. Go to the Pain Management practice and eat the bill. It's expensive but also one needs to remember opioids are NOT the only way to manage pain "symptoms" and will make your pain worse in the long run. So in reality managing with opioids is an elective choice and you will pay more for that. In PM we struggle to find if the patient is treating the pain anymore or the early symptoms of withdrawal (meaning the "coming off the high" vs BP changes/sweats/etc) and if so how do we determine an appropriate dose for the original pain? It doesn't mean you did ANYTHING wrong but there is a price to pay treating pain with narcotics-it fixes nothing. So yes, your PCP is oversimplifying the truth (although he's right-narcotics are NOT the first line for anything including chronic pain) so he can get you dosed down or off the narcs but he's doing it for your own good in the long run. Even if you've tried interventions in the past you will be asked to try them again and some new ones. The prescribing guidelines, CDC recommendations, insurance coverage, State Board regulations, Mfg. inventory, etc. is ALL changing so it will leave many people to be forced down in the next few years--better to find your options now vs later. Good luck to you-

2 Votes
Specializes in Psych, Addictions, SOL (Student of Life).

This is a very positive update.

While I got the pain management consult and what I was asking for at the time - there have been some changes and positive developments.

I had an elective tummy tuck done in August and suffered just about every complication that could go with it including a complete dehiscence of my incision. I have been receiving wound care and it's currently down to 10 cm long and 2 cm deep we expect full closure in the next 4 to 6 weeks. Throughout this odyssey several physicians have been concerned about my pain and I can't tell you how often I've been asked if I want something like Oxy or other opiate. I have had to politely say no and explain I am on a pain management contract. I have also explained that since all the nerves were removed with the skin and fat that I am really not in pain from this problem.

Because I have to use certain body mechanics to get in and out of bed without complicating my wound my husband rented a hospital bed which I have been using. Guess what just sleeping in what is called the zero gravity position has cured my chronic pain completely. It has also cured a decades long battle with insomnia. Who could imagine sleeping like a baby and pain free (with a hideous wound) all from a change in sleeping position. I have not had to take anything stronger that Ibuprophen in about 6 weeks. BTW I did not suffer any WD symptoms because I was not using the med excessively.

We are currently pricing a king size split mattress adjustable beds since it has worked so well - I even stopped snoring!

4 Votes
Specializes in ER - trauma/cardiac/burns. IV start spec.

OP had a regimen that was working for her. A regimen that was arrived at by her first doctor that was a pain management specialist. In comes a new doctor who is NOT a pain management specialist and throws out all the work done to get her to a livable state. So she did have a pain management doctor who retired.

The CDC did not say to throw out effective treatments that include opiates but to work up to them if necessary, to use the lowest dose possible, to dispense immediate release and not the long acting or extended release and to use urine drug screens at least yearly. Before a patient is accepted into pain management we have already tried all the other treatments, physical therapy, TENS units, radio wave ablations, steroid injections, muscle relaxers, Gabapentin, and others. When we go to pain management we are desperate and feeling more than a little isolated by the very things you wrote. We are not numb, we are not pain free, we are able to get out of the bed and take care of our family, cook, clean, take showers, and for some able to work. We are tired of the stink eye we get when our scripts are filled, we are tired of all the world thinking we do not deserve pain relief. Been there, done that, got the t-shirt multiple times.

I cannot walk into a physical therapy room now if I wanted to - latex. I had nerves relocated to help reduce the pain - moderate relief. I have had ablations on nerves without success, I still have pain bad enough that making it to the bathroom is an olympic sport for me. I started with 5/325 and now am on 10/325 4 times a day. I take Zanaflex for the muscles, I am no where near pain free. Tried TENS and other stimulating units but no more - allergies. I have had 2 surgeries on my c-spine but no surgeon will take me on now. Disks in the lower back collapsing, one nerve pinched off now with another going - no surgery in my future - latex - I am too risky now. We have had a short discussion on the next step up and I refused. I do love the fact that so many people think buprenorphine is not an opioid, not addictive and safe. It is highly addictive, recommended for the opioid experienced only and is currently being doled out like Oxy once was. I also love that a medication that has been on the market since the 80's is not generic yet with no sign of generics show up soon and no insurance coverage. Middle of the dose is just over 500/month out of pocket.

"We need to rethink our pain". Just how is someone supposed to "rethink" pain? What happened to pain is what the patient say it is? "Maximizing multimodal therapies as well as holistic approaches need to be explored and tailored to individual patients" and that is what pain management doctors do, they find what works for each individual patient and I do not think the CDC and DEA should be in that mix.

"If you need opiates, I'd argue your pain isn't being managed and you need a better workup". A better workup? You are sent from the office of the best neurosurgeon in town to the best pain management doctor in town but I need a better workup. I had 4/5/6 fused, a few years later we had to stabilize 2/3 to the previously fused but this time it had to be plates and screws. Recent MRI shows l2/3/4/5 collapsing on themselves due to disk deterioration with one nerve pinched and another being pushed out of place. A better workup? Well we have not done an MRI on any of the thoracic areas where there is pain but I am not talking to the doc about that yet.

I feel for the OP. I am in the same boat but my doc is willing to go to bat for me to keep my medications. Moving to patches is a no go, I react badly to the adhesives. She needed to be sent to a pain management specialist when her original doctor retired. The lack of understanding and compassion for people in chronic pain within the medical community still astounds me. I have also seen the change in doctors and other nurses in regard to pain management after they are suddenly hit with the same type of pain others live with, they seen to always come back more willing to sit and listen to their patients, try treatments that may be outside the box but they are always more willing to provide better pain control than before.

I do not know because the OP did not address this but I have never been high, numb or even pain free since 2005.

3 Votes
djmatte said:
I've gotten pretty far managing chronic pain for an array of patients over the past 2+ years doing the exact things I described and reducing opiate use. Studies are backing CDC pushes to reduce opiate use and they should have never been used to the extent they are now in the first place. She never indicated she was strictly taking opiates for "breakthrough". Only that she tried all others out there first. I don't discount the fact that opiates are helping her. I think they would help a lot of people because being numb is certainly better than pain. But the risk of overdose, addiction, and long-term side effects of opiate use make them a non-starter.

For someone with chronic pain, it will never completely go away. The goal is always pain reduction with function improvement. The conversation she had with her provider of "if it comes back, I will refer you" tells me she was punted by someone who really doesn't get this concept (and maybe she has unrealistic expectations of pain management). Multi-modal therapies (multiple drugs at the same time) plus holistic approaches (acupuncture, massage, physical conditioning/therapy, mental health medicine) can all be utilized to round out the picture and improve outcomes.

Greasy wheel syndrome and provider laziness is why we are in this predicament. And certainly something I am not willing to be a part of.

Try having a severe accident or horrendous painful condition yourself. Then you can criticize others.

2 Votes
Kooky Korky said:
Try having a severe accident or horrendous painful condition yourself. Then you can criticize others.

I don't criticize patients (and note I never did here). But I will criticize poor prescribing practices all day till Sunday.

2 Votes
Specializes in Psych, Addictions, SOL (Student of Life).
On 11/6/2018 at 4:07 PM, djmatte said:

I don't criticize patients (and note I never did here). But I will criticize poor prescribing practices all day till Sunday.

I just want to update you all and tell you to give djmatte a break. I do believe that he/she is sincerely trying to make the best of some ridiculous regulations that were forced upon pain patients and their doctors because of a few unscrupulous prescribers in collusion with the joint commission that created this opioid crises we are in.

In my own case my pain and I are old friends. I never expected to be pain free. I wouldn't even know what that felt like. Still this discussion and recent very bad surgical experience caused me to look at things in a different light. Even though the pain management specialist I was sent to ultimately reinstated my pain management program. I did make some changes that ultimately made a huge difference in my pain management. I bought a new bed (a very expensive one - I'm talking almost new car expensive) and the improved sleep has been a godsend. I am actually using far less medication now than I was 6 months ago.

I appreciate djmatte input and comments as well as all of your input and help.

Hppy

2 Votes
On 8/2/2018 at 2:33 PM, hppygr8ful said:

So Pain management specialist did no agree with my PCP. She did a very through history of my pain, my medical conditions and past treatment. She told me that my PCP taking me off my low dose opioid was inappropriate and that she was putting every thing back the way it was. Caveat was that I would have to take a monthly uds to show that I was not using any other substances. Sounds fair enough to me.

Hppy

When I read how little you were taking hppy, I almost burst out laughing. Not at your situation of course, but the ridiculousness of getting worked up over 2 5mg Norco a day. And then, I got angry. Angry that a practitioner's willingness to completely f*** a person's life up who is gainfully employed.

I was a part of the opiate crisis. I get why we have so many practitioners rethinking prescribing practices and I'm glad. Now, if I get hurt, I know a pain medication will help me. Before, my tolerance was so high that I couldn't have said that.

The YOUNG patients I take care of who are getting enough Dilaudid PO and IV to fell a draft horse, but are still screaming down the hallways for more drugs are the ones I think these new laws should be directed at. To try and take someone's 5mg Norco BID away from them is just plain, stupid overzealousness.

2 Votes
Specializes in orthopedic/trauma, Informatics, diabetes.

My PCP wouldn't prescribe pain meds (Tramadol!!!!), so I got a referral to pain clinic. Best thing I ever did. Dr. is fabulous and the NP I see most of the time is really helpful. I get to pick their brains about the latest in pain management too.

3 Votes
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