Pain Management Doc Issues

Hello everyone, I am new here. I read quite a bit of the posts and I really appreciate all the info here. I am having some issues and I hope someone can give me advice?

Edit: Please read my responses before commenting so I don't have to repeat myself.

I have been seeing the same pain management doctor for about 6-7 years. I was referred to him from my family doc, who couldn't prescribe me pain medicine any more for my back due to my tolerance going up and the dosage going up as well. I initially injured my back while hiking up and down a steep hill here in Montana, pulling my two young kids in a wagon behind me. I went to many different doctors, physical therapists, chiropractors, etc. but nothing helped for long and they said the only thing they saw was degenerative discs (which they called normal with aging, ha!), arthritis, and a hemangioma on my spine.

My pain doc tested me with different things, I got MRIs, X-rays and injections. The injections helped, but the longest they helped was a week. The thing is, he injected in a spot different from where my pain is centered, I tried telling him but I don't think he listened to me.

It seems he gave up on trying to figure out what is causing my pain and instead has just been giving me the meds as a bandaid for at least a few months, possibly a year. I didn't know he gave up until my last regular appt when I asked him if his new stem cell business he might be switching to could help me, "we don't even know what's causing your pain". I was appalled! I didn't know he gave up on treating me!

Well, he also told me previously he was upset with the government interfering with his business and he already switched his board certification to something else. That's quite concerning for me, but I kept going to him, not wanting to rock the boat and hoping he would change his mind..

But over the years I have grown very tolerant to the meds I am on (Zohydro ER and hydrocodone for breakthrough pain) and he didn't want to increase my meds even though I was having a LOT of breakthrough pain over the past few months. So, I asked him if I could try different things to try to reduce my tolerance and/or my need for the meds. He gave me permission to try medical marijuana, which is legal in my state (Montana) and CBD pills and oil, which is legal everywhere. I tried them both to no avail. The CBD seemed to boost the meds a tiny bit, but the price for them to do so little is prohibitive for me. The medical marijuana seemed to help with my pain, but I was affected mentally and I do not want to be high. I need to keep my wits about me and be able to drive WITH my pain relief working. That's obviously impossible if I'm "stoned".

So my last option was to switch meds. Every time we tried to switch meds, it didn't work for me. I cannot take NSAIDs, they cause my stomach to bleed and give me ulcers. Oxy types do not work at all for me, and the other stuff he had me try (Opana, Morphine) didn't seem to work, either. The last options are methadone (no thanks!), fentanyl (no thanks again!) and hydromorphone ER. So he put me on the hydromorphone ER (a week trial), but either he did the math wrong or he just likes to give 50 PERCENT less what his patients were taking, because I was still in pain. Before he gave me the script, I asked him to be sure to give me some meds for breakthrough pain (since I remembered what happened the other times and they didn't work, I was miserable), he said, "I'll give you a couple." his exact words. He gave me 14 pills of hydrocodone, but he reduced the mg dosage. I was taking 10/325 and these were 7.5/325. I read the bottle, it said to take two and I thought he just made a mistake. I did the math, 7.5 x 7 = 52.5 mg, which is about what I was taking before (I was taking 5-6 generic Norco each dose for breakthrough pain).

I waited till the evening and the pain was bad, so I took what I thought was one dose, 7 of those and went to bed about two hours later. They didn't help a whole lot, but a little. The next morning I was hurting when I got up and waited a bit but took what I thought was the next dose and called my doctor's office to explain what was happening. The nurse was pissed at me, she was always pissed at something and even told me last appt that I was one of the patients she "hated to see come in" because my insurance gave her a hard time. I actually changed our insurance because of her! I can't believe she'd tell me to my face she "hated to see" me, but I didn't want to rock the boat so I didn't say anything to anyone...

Anyway, I explained to her that I took my rescue medication and I was still in pain. Long story short, the doctor seriously wanted me to take only TWO per dose, 15 mg ... when I was taking 50mg each dose just a few days prior. I misunderstood him, so he was pissed at me, thinking I was "abusing" the medicine!! He said, "that would be a dismissable thing". I have been seeing him for 6 years and never did anything wrong, I'm completely honest, I kept him informed on everything I have been doing.

He made me take a pee test, I guess he wanted to be sure I actually took the meds myself and didn't sell them or something. It's hard to believe he'd have such distrust, even after all this time, especially since I never lie. I guess I understand, docs must get lied to pretty often in that business, but it still hurts my feelings...

Well, he came in saying there was oxycodone in my pee! I tried oxycodone years ago through his office and it didn't work for me, I do not take anything other than what he prescribed, the medical marijuana and the CBD. He made me cry, it shocked the heck out of me, being accused of something I didn't do and being treated like a criminal! I am 100% sure the lab will verify there is no oxycodone in my pee, there couldn't be! But until that comes back, he must be thinking I'm a liar, which really, really hurts.

He had mentioned a "medication holiday" before to me, and I looked it up after the last visit when we switched the meds over. I was saying I'd be willing to try it in the summer when I have a little less pain (the weather and cold seems to make it worse) and more time to schedule a week or two of detoxing. He FORCED ME on the holiday, against my wishes, walked out without me being able to say anything. The meds were still working for me, I was just getting too much breakthrough pain. He very easily could have increased me breakthrough meds a little for two months till I could try the holiday. I am sure he did it as a "punishment" to me, though I truly did nothing wrong. I misunderstood what he said and I did NOT EVER take anything other than what he knows about (besides some vitamins).

I am sooo upset at this doc for #1: Giving up on finding the cause of my pain and just bandaging it. #2: Not listening to me and forgetting things we discussed in previous visits and #3: Punishing me without any proof. He's switching professions anyway, it seems, so I need to just quit and see another doctor. The nurses mentioned the other pain management clinic to me when I was leaving when I asked about withdrawals and possibly using something (Suboxone, I think?) to keep it not so bad during the holiday. So I called them and they said to get the records or a referral from my current PM doc to them to start the ball rolling. My PM doc is not there on Fridays, so I left a message with their answering service to please either refer me or just transfer my records over to the new one, whichever they prefer.

Did I do the right thing? What do you guys recommend? Am I REALLY taking too much of this medicine? I have always had issues with anesthesia, it wears off before the dentist is done in my mouth pretty often and what's supposed to last 12 hours (the Zohydro ER) only lasts 6, the hydrocodone only lasts 2 or 3 hours at best. I have mentioned it to the doc before, he said I might be a fast metabolizer and I asked him to test me. He never did.

I was on 3 50mg Zohydro ER a day and 5-6 hydrocodone 10/325 a day for breakthrough pain. Before, I was on 2 Zohydro ER a day and 8 hydrocodone 10/325 a day for breakthrough pain when my old insurance stopped approving the 3 a day. I am a large lady, btw.. Weight definitely matters when it comes to meds. IMO doctors should be dosing by weight and tolerance, not just a flat rule set by some bureaucrats or politicians...

Thanks for any help, I'm so scared and still in pain, not to mention hurt. :'(

Post Edited (Pashta) : 3/10/2019 8:07:11 PM (GMT-6)

Thanks for the response, Seashell. I appreciate and read your whole message. However, I am not young. I'm 45. I am very, very tolerant of this medicine and try to believe me, though it may be hard, that taking what I was was NOT working well for me. I was still having a lot of breakthrough pain. The Zohydro ERs are supposed to last 12 hours, they do not. For me, they last 7 at the very longest. I even wrote an official complaint after calling the company, filed a form with the FDA about it not last as long as advertised. They do not take away my pain, they lower it to around a 4. So at least once a day, every day, I am in full-blown pain mode and need the short-acting breakthrough meds, which 50mg of the generic was the absolute minimum that worked for me. It did NOT make me "high", it didn't even usually take away all my pain. It just lowered it to a 1 or 2. I only felt "high" in the very, very beginning when I first started taking them and even then it was only for about 3 days and was accompanied by itching. I have not had that itching or a "high" since then that I can recall. Let me be clear: I ONLY TAKE THE MINIMUM I NEED.

I USED to be at 1 or 2 pain level last year when I was on the 3 Zohydro ER a day and the 6 short actings. Then Blue Cross decided to revoke my prior authorization for 3 a day of them, and I had to drop to 2 a day and had to amp up the short-actings to replace most of the missing mgs (over time because pm doc is like that). When I switched insurances and got the 3 a day back, PM doc decided to only give me 5 a day of short acting, for what reason I know not!! Common sense would say I should go back to what was working 6 months ago, which was 3 Zohydro and 6 short-acting. I apparently got even more tolerant over that time period and have been struggling ever since.

I know all about what opioids can do to your brain over time. I research quite a bit and advocate for myself, to the chagrin of my ex-PM doc, apparently. Well, I will find another that actually cares and wants to find a cure for me.

I tried to reduce my tolerance myself over the past few months by stopping the short acting meds for 2 weeks at a time, 3 months in a row. It never worked. I'd go through nasty withdrawals and level 5-7 pain the whole time. I would get my new script filled and try taking only 4 and it didn't do a thing, my pain remained the same level.

I'm afraid that the generic pain pill makers are ripping customers off, not including enough medicine in the pills. That's the only explanation I can figure, since with the name brand, until they stopped making it (Vicodin HP), I only needed 4 per dose. Now there is no other hydrocodone except generic and I apparently am screwed because of it.

I have serious pain and nerve issues, yoga and exercise isn't going to cut it for me. I have something wrong with me that needs fixed, not bandaged. I need someone that knows what they're doing to take a look at me, test me and fix it. I HOPE it's fixable...

Post Edited (Pashta) : 3/8/2019 5:31:11 PM (GMT-7)

Hi Pashta & welcome to the forum. Treatment of chronic pain has become extremely restrictive in the past several years. When the guidelines came out we saw a lot of PM drs give up practicing, patients had their medications either reduced or taken away. Since your dr is going into a different field, I would get the referral to the clinic the staff member mentioned. It will be easier by doing this, rather than attempting to find one on your own. I am sure you are aware of the "opioid crisis", it's in the news daily.

Keep in mind with any new PM dr you will have to sign a Contract with all of the do's & don'ts.You mentioned the dr ordering a UA, I am guessing this was your first one. Be prepared to have to do UA's, some drs do them every 30 days, others will do them at random. That's part of the CDC guidelines.

I don't know if you have copies of your testing or not, such as an MRI. Any tests you have done you should always get copies to keep on hand. Have you seen any specialists besides the PM dr? The MRI report will show what is going on with your back. Treatment of degenerative disc/joint disease is a tough one to treat. Drs can only treat symptoms the best they can. Surgery is not warranted unless it becomes severe which would show on an MRI.

Do not expect a new dr to write scripts for what you were taking 6 months ago. I know that isn't what you want to hear. Perhaps the new dr can come up with some options to help you out.

Living with chronic pain is not fun, besides medication we have to find other ways to help ourselves. I have been in PM since the early 90's when they first started here. While I may not like the environment we have today,, the flip side is I think it's better than nothing. I just keep reminding myself of this.

Keep us posted on how you are doing.

You will not find a doctor that will prescribe 50 mg hydrocodone for breakthrough pain. It is highly doubtful you will find a doctor that will prescribe three Zohydro a day. Breakthrough meds are not suppose to be taken every day.

Pain medications are not prescribed to make patients pain free. They are prescribed to help manage pain. If I remember correctly, a pain level of 5. Means the pain medication is working as intended.

It sounds like you need to be prepared for your current pain doctor to start reducing your pain medications in the near future. You need to find non medications ways to help manage your pain along with less opiates. Doctors are no longer increasing dosages when patients build up a tolerance. Most doctors will not prescribe more than 90 mg a day. Many insurance will.not pay for more than 120 mg daily. Without a prior authorization. Some will not pay for it with a prior authorization.

Most pain management doctors are using the 90 MME. Even if you have proof you are a fast metabolizer. That does not mean a doctor will prescribe over the 90 MME.

HealingWell is one of the most supportative online forums. The people here are honest. Even when a,member doesn't agree or want to hear it.

Pashta, no one is passing judgment as every individual is different. You are correct, the CDC Guidelines are recommendations only. However, PM drs are adhering to this prescribing because they are being flagged if they go over the 90mg per day. Keep in mind with the prescription monitoring database in place all drs & patients that receive an opioid are in this database. This is how they are keeping track of drs. The other side of the coin is now insurance not willing to pay for medication or a limited amount only. I stay as informed as possible about this. We do try to let members know what is happening across the country with the opioid crisis & patients having access to medication. As a result of these guidelines this has also had a profound effect on cancer & hospice patients.

As a result of the guidelines many PM drs stopped practicing a couple of years ago & went into a different field. Anesthesiologists/turned PM mgt, went back into being a full time anesthesiologists. If a PM dr was an MD, they switched. This change affected thousands of people because a lot of dr would not take on new patients. Two years ago my PM dr went through his patients one by one, many were dismissed from his care, others had their dosages reduced to be within the guidelines. His explanation was simple, I will not lose my license over a patient, I do not want the DEA at my door auditing my practice. Believe me, the DEA is very much involved.

None of us are happy these days but until something is changed we are stuck in the middle.

Pashta, your PM dr is doing what many of them did a few years ago. He has decided to change his field because he is done with the government telling him how he "should practice medicine". He knows if he doesn't stay within the guidelines he will targeted. I would not be a bit surprised if this hasn't already happened. Keep in mind these drs receive a letter once a month from the CDC, reiterating how to practice medicine. In all fairness, I do understand the drs side of things. I disagree with your thought that your dr is not making enough money in PM. PM is a very lucrative business, but now has very tight restraints at every angle. Look at other areas of medicine, drs are left at the hands of insurance company's deciding whether they will approve procedures & surgeries as an example. The practice of medicine is controlled by non-medical background individuals.

My prior PM dr retired because she said, I did not go to medical school & devote my life to the medical field to be told by the government how to practice medicine. She was subject to audits by the DEA, which are done at random. They show up without any warning. Their computers are taken over & it disrupts business. Of course she passed with flying colors too & she was not intimidated by them. Keep in mind, most drs are very intimidated of the DEA showing up. Prior to going into PM, she was a neurosurgeon. When she retired from surgery it was because of the excessive malpractice premiums. We lost many good orthopedic & neurosurgeons that specialized in spine surgery in 1995. Their premiums tripled in one year. She chose PM so she could continue to help people. Currently, companies in my large city have a monopoly on a lot of drs, they operate under a very large umbrella that provides their malpractice insurance as a part of the deal.

Will the pendulum of treating chronic pain patients ever change? I am 65 years old, I don't think I will live long enough to see any big change. What the future holds, no one knows. All we can do is the best we can for ourselves. I do understand the long waits in small areas, hopefully you will not have to wait too awfully long.

One of the things you can do is adjust your lifestyle. In other words, do not do the things that cause you the most pain. Ask someone to help you or do them for you


Have your children help with things. For example, picking up their dirty clothes and putting them in the clothes hamper. The day you wash clothes they can put their dirty clothes in the washing machine, move the clothes from the washer to the dryer. They can put their dirty dishes in the sink or in the counter, load the dishwasher, etc. If you are sitting down or laying down and want a drink of water. Ask them to get it for you. If your children are teenagers. There is a,lot more they can help with and do. Ask your spouse, friend or family member to go grocery shopping with you. They can pick up and carry the groceries. They can also help put everything up when you get home. Ask someone to change the linens on the bed. These are just a few examples..No one likes asking for help. But the days of taking pain medications and doing things like we did before we had chronic severe pain are gone.

A Pain Psychologist might be helpful. Things like accupuncture, physical therapy, TENS, aqua therapy, etc can be helpful.

There are over the counter medications that can help with withdrawals. Your regular doctor or pain doctor can also prescribe medications to help. If you go to the ER. They will not prescribe opiates. But they usually medications to help with symptoms of withdrawal.

A new doctor will want a copy of your medical records from your current pain doctor. You might want to get a copy and read them. What is written in your medical records can help or prevent a new doctor from accepting you. What is written about you taking the 7 Norco when only 2,were prescribed could be a,deciding factor with a new doctor.

It sounds like your condition may have gotten worse. It might be time to see a Neurosurgeon. Usually when the condition gets to a certain point and the pain is unbearable. Doctors will operate.

I do not mean to sound unsupportive. But as,Susie said, we have been seeing this for quite a while. We have learned from personal experiences and the experience of others what can be helpful during this time.

What dosage of Zohydro are you prescribed ? If you are not taking a high dose. Perhaps a higher dose would be more effective.
Zohydro comes in 10 mg, 15 mg, 20 mg,30 mg 40 mg and 50mg..

I would ask my pcp to refer me to a neurosurgeon for an evaluation of the hemangioma. This is a common condition that happens more with women than men. A good neurosurgeon can review your MRI to see to exactly what is going on with the tumor. If you have done your research about this you know what treatment options are available. Something like this should not be evaluated by a PM dr.

While I know you are upset, keep in mind the members here are trying to help you with suggestions. These suggestions are coming from people that are long term chronic pain patients that have tried many, many different type of treatments. Try not to be so defensive.

I read every post in this forum, that is what a mod does in their forum. Being respectful of others is a must, otherwise, I have no problem reminding a member of the rules here at Healing Well stated by the administrator. No one has attacked you here.

We are offering suggestions that a person can consider or not. We are not drs, we all speak from our own experiences & nothing more. For many chronic pain patients pain psychologists are extremely helpful. Anyone that thinks seeing a pain psychologist because the pain may just be in their head is greatly misinformed.

It was suggested before, perhaps you should obtain copies of your medical records from your dr, I agree. Considering the turn of the relationship with this dr you need to see what has been written in your chart. If negative comments are in the chart it could make things difficult getting another dr to take over your care.

Pashta, medical records cannot be changed. Some patients will make an addendum & ask that it be included in their records. To be honest, I do not know if this will make a difference or not. You can read your records & if you find a discrepancy make a note of it. Be careful discussing conversations about you understanding the dr to say x amount of BT meds per dose, when he stated he did not say that. The reason is, patients are responsible for checking their scripts from the pharmacy to make sure it is the correct medication & look at the dosage printed on the label. Pharmacies can & do mistakes. I would not raise issues with a new PM dr unless you are questioned.

You mentioned being in a rural area, you may consider doing a google search for a PM dr out of your area. Call & see if they are taking new patients, if they take your insurance & what is needed for a consult. If you don't get in somewhere quick you will run out of medication.

Last of all & very important. Because you are under contract with the PM dr, you must put it in writing that you are releasing him further care. You can hand deliver the letter & be sure to state it was hand delivered. As long as you are under his contract it is binding. Be sure to keep a copy for your records because a new dr can ask to see a copy of the letter.

Ok, let me back track a second.

If this PM office is referring you to the new PM dr, you will not need to give written release of his services. So if this is the actual case skip this.

It is against the law for a drs office to release medical records to another dr without written consent from the patient. The HIPPA laws are in effect.

Whether you want to go to the office or not, you need to go there & sign the release of records form so that your records get sent to the new dr.

Every PM dr I have seen, since the mid 90's require a copy of one year's worth of prior records including any testing. Without seeing those records an appt is not given.

With PM dr we do not have the luxury of just calling & making an appt, this happens very seldom these days. Time is not on your side here & you need to getting things rolling or you can end up without a dr or medication.