Pain Management Clinic, Guilt, Thoughts?

[Jeigh44]

Hi Everyone,

So I have been seeing the same Rheumy and Neuro, for close to 5 years now.  I have never once asked for pain meds, etc.   My neuro put me on Cymbalta and Gabapentin.  I do not like the Gabapentin because it makes me feel like a zombie, and I am only on 20mg of Cymbalta, as I have read that is has a lot of negative side effects once you start upping the dose. 

In November, I was having a very difficult time sleeping because my muscles and joints ached so much that I decided to ask my neuro for pain meds to take, only on the days that I am in pain.   (I am 35 and a personal trainer).  When I asked, she looked at me like I was asking to purchase cocaine or meth from her.   She said she doesn't  normally prescribe pain meds unless I have had a surgery.  She said she would give me 10 pain pills this time, and that was it.  I was so upset, because she has known me for years and I felt so judged.   They have no problem having me on prednisone, plaquenil, or imuran, but I guess pain pills are a no? 

Fast forward to this month.  I finally decided to go to a pain clinic, the dr. made me take a urine test, collected all of my records, and prescribed me norco 5/325 to take for pain.   I am curious if my neuro or rheumy are going to ask me about it, since the clinic wanted records from both drs?   I feel like this whole situation has been horrible, and now I feel so much guilt over the situation, because I felt like I had to go behind my drs. back to get the pain meds. 

Has anyone experienced anything like this?  Is it normal?   


Thanks. 
J

[Joe S.]

You are not a lone in this feeling. I have been through many pain medications and the codeine derivatives are the only ones that had worked for me. I asked a doctor for a script for bad days. I had been going to the doctor for years. I was treated like I was strung out on heroin looking for drugs.

My wife and daughter gave me a piece of Blue berry cobbler made with Green Butter. I could do without the 2 hours of hallucinations but I had 16 hours with out pain. My BP was lower for a week, and the Glaucoma in my left eye cleared for a day. My doctors told me I would have to wait until they were certified for Marijuana. I asked after several visits and was treated like a drug addict again.

The doctors get a 1/2 credit hour on pain drugs in college. They are told how bad things are and DEA oversight issues that threaten them with jail time. The reaction that you received is typical.

I do not know what I am going to do now. I guess I will just have to continue to suffer from pain.

[wendyoh]

sadly I think pain management in US is in a mess......imho I think its partly due to several factors. One part is there is a stigma to admitting you're in pain or complaining about it as a chronic thing, there is a lot of culture of suck it up and do what you have to do here and probably also in other countries with similar monetary systems . I think people that aren't as bad off would rather think we are making it up because it scares them as they can't relate to our situation and they don't want to think it could happen to them.

And another factor is that in the 90s there became a cultural shift to being more open to treating pain as the humane thing to do, a physician gave me a paper that was written about that in early 90s and it outlined that medicine's standard of care was shifting to being encouraged to treat people in chronic pain with whatever means were effective for the individual. Additionally prescription opiates like oxycontin were tweaked to be made long acting etc and were handed out more liberally and people with sports injuries taking it temporarily would accidentally get addicted if they had propensity for that and then addicts not in need of it medicinally also got in the act and abused a lot of the meds and it became quite a racket. That said research usually shows that someone truly in chronic pain is less likely to abuse that kind of medicine but of course someone with chronic pain could have a genetic tendency to have addiction or tolerance issues so its not unheard of either. Eventually there was a backlash of concerned people that then wanted to ban all of it and measures started to be taken like taking propoxyphene/Darvon off the market in 2010 to throw a bone to those concerned groups; it was an older opiate, one of the most lightweight pain meds and was helpful for select small group of folks like geriatric or people that couldn't tolerate the big gun drugs so I think it was sacrificed to appease groups putting pressure on system to take action to combat the abuse of pain meds. Big pharma  can't make money off of older meds with patents long expired so they wouldn't mind sacrificing an older med to make it look like they are concerned. I think the propoxyphene ban was a sad move because its much easier tolerated than something like oxycontin or prescription NSAIDs that tear up stomachs etc  At any rate there has been more momentum in this backlash against the previous humane movement of treating pain aggressively for chronically ill and that is where we find ourselves now.....I have seen the pendulum swing in last 25 years, first to generous treatment and now to this regression to stingy and shaming in some cases.

I think doctors get nervous because some of them have been targeted as being a "doctor feelgood" and no one wants to get that rep because it can ruin their career. Its a dilemma for everyone, patients and providers.  My friend and I were just talking about that Seinfeld episode this weekend, the one were Elaine gets something written in her chart about being a "difficult" patient, and no matter what doctor she goes to the rep follows her, its really funny because it perfectly shows how hard it can be once you get perceived a certain way to shift that and how unfair it is, but best thing to do is to see if can cultivate a trusting relationship with some primary provider to advocate for you and to keep your cool and read up on effective communication. I say this but its not like I am able to always abide by it because when you don't feel well its hard to go in there and talk like a perfect lawyer or salesperson and get what you need or want. I can no longer tolerate any pain meds anyway so there isn't anything like that I want from the system but even just trying to get certain labs etc can be a challenge and takes thoughtful educated approaches....which I find frustrating that we have to try to be such informed and advocating consumers, that the system isn't more user friendly but I do think some of it comes down to money.....competing interests of managed care, big pharma etc I think the Lyme's film "Under our skin" illustrates as a case study an example of the politics of why and how this happens. But there are still compassionate care providers out there and you just have to hang in there til you find one. Or if you have money go to integrative care where they can tailor to your needs and your checkbook...............

[Carolina]

Pain management is a minefield, no doubt about it.   When I went to a pain management clinic connected with Duke, my doctor 'fired me' (sent me back to  my Primary Care MD) because I was allergic to everything he prescribed!  Well surprise, I'm allergic to anything related to codeine, which is almost all serious pain medication.

Today, however, I am virtually pain free.  And this is with severe osteoarthritis, profound peripheral neuropathy and fierce small fiber neuropathy.  How have I achieved a pain free life?

1).  I am on low dose Medrol (2 mg a day for two weeks, 2 mg every other day for two weeks, and repeat).  This is methylprednisolone, a corticosteroid.   I have to take it to tolerate my IVIG infusion every four weeks, but of course it helps enormously with pain.

2)  Cymbalta, I have taken  60 mg of Cymbalta daily for 7 years.  No problems.

3)  Gabapentin, I take 2400 mg Gabapentin daily.  If I'm a zombie, that's probably an improvement since I'm more than a bit hyper!

4) Palmitoylethanolamide   This is the newest part of my pain management.  Palmitoylethanolamide (yep, abbreviated PEA) is a natural part of our biochemical system and is a better anti inflammatory than any of the NSAIDS.  I'm still working out the dosage, which is usually between 1000mg/day and 2000mg/day

Here is a link to the NIH research:

https://www.ncbi.nlm.nih.gov/pubmed/22697514

In addition to the hypothesis that PEA has potent immunoregulatory properties, recent data have demonstrated that PEA may also play a key role in the regulation of complex systems involved in the inflammatory response, pruritus, neurogenic and neuropathic pain.

https://www.ncbi.nlm.nih.gov/pubmed/26815246

RESULTS:
Results showed that PEA elicits a progressive reduction of pain intensity significantly higher than control. The magnitude of reduction equals 1.04 points every 2 weeks with a 35% response variance explained by the linear model. In contrast, in the control group pain, reduction intensity equals 0.20 points every 2 weeks with only 1% of the total variance explained by the regression. The Kaplan-Meier estimator showed a pain score = 3 in 81% of PEA treated patients compared to only 40.9% in control patients by day 60 of treatment. PEA effects were independent of patient age or gender, and not related to the type of chronic pain.
LIMITATIONS:
Noteworthy, serious adverse events related to PEA were not registered and/or reported in any of the studies.
CONCLUSION:
These results confirm that PEA might represent an exciting, new therapeutic strategy to manage chronic and neuropathic pain associated with neuroinflammation.

I rarely have pain, except in the very early morning, and then it is a mild myalgia, related to the SEVERE degenerate disc disease in my neck which I have had for over 25 years.

Now I KNOW that many of you cannot tolerate the medications I use, or have concerns about them.  I have had to find solutions in order to find any quality of life.  Trial and error have brought me to this place.   Who knows how long this system will continue to work?  I'm not worried about my Low Dose Medrol since the amount is tiny and I alternate during the third and fourth weeks, so I don't take it constantly.

I would say that the Gabapentin is the most important part of my pain management, particularly as relates to my Small Fiber Neuropathy.

Cymbalta is on label for every pain from arthritis of the knee to fibromyalgia. 

I hope you all find help.  And I know it is discouraging.   My son, a psychiatrist, works with opioid addicts.  There are far many than can find treatment.  His practice is opening 3 more clinics soon.

As a general rule, (and please don't take offense) opioids are not ideal for long term pain management, for many reasons.  Principally they lose effectiveness over time and the dosage has to be increased.
I know many of you are dealing with doctors reluctant to prescribe opioids, and yes they are audited and carefully overseen by the DEA (not the kindest, gentlest regulatory agency!).

Someone commented that when they were prescribed opioids, they had to provide a urine sample.  Sadly this is to confirm that the patient is TAKING the opioids and not selling them.  The street value of opioids is very high.  Many long term  opioid addicts who have lost their families their jobs and their homes, finally turn to heroin, which is much cheaper.

This is a very sad situation all around.

I am perhaps lucky the I simply cannot take opioids, so haven't had to deal with the discouraging chain of events currently surrounding opioid usage.

Best wishes,  Elaine

[SjoGirl]

Well, unfortunately the pendulum is swinging in a not good direction for those who live with chronic pain. Docs and others now realize that they handed out opiods to too many people for the wrong reasons because they did not realize how quickly they can become habit forming for some people.

There is new pressure on docs to avoid use of opiods and one does practically have to go through a background check to receive a prescription for them. However, I didn't hear you say that you ask for an opiod, simply a drug to reduce pain.

Well educated docs should also know that pain is now seen as it's own syndrome and must be controlled before it spirals out of control. Plus, they take an oath to do no harm, one might ask what harm it does to leave a person to live in pain.

I am fortunate to have a PCP with whom I can discuss anything and other docs who are willing to treat my pain. I don't know that I would feel guilty for seeking out relief and assistance if they were unwilling to help. I do prefer that my docs know what one another are doing,  as much for my sake, safety, and health as anything.

FYI meditation is increasingly being shown to help with pain reduction. It's not necessarily a replacement for meds, but can be a good supplement. Peace to you and may better days lie ahead.

[Jeigh44]

Thank you, Everyone, for sharing your thoughts and experiences.   This whole situation has taken me by surprise, and never thought I would be met with so much judgement, especially from drs. who have known me for many years.  To be honest, the pain management clinic, made me feel pretty violated and yucky.  Having to take a urine test, sign a lot of documents, etc, was very shocking to me.   I felt like it was more of a lawyers visit, than a dr. visit.   I am not even looking to take pain meds, every day.  I only want them for the days when my pain is so bad, I can't sleep.  I guess I shouldn't care about what my neuro/ rheumy thinks about me going to the PMC.  My neuro has given me so many meds, cymbalta, horizant, gabapentin, propananol, etc.   and I do not want to take any of these meds.  I would rather just take something for pain, as needed, and not be on daily medication.  I think that is very reasonable.   I do take my imuran and plaquenil daily. 

I am wondering if my neuro and rheumy will bring up the pain clinic, since they requested my charts, etc.

I just never thought I would be in a situation like this.  I am a pretty "straight laced"  guy.  I barely drink, and have never used an illegal drug in my life.   

Do you think I should bring it up the pain clinic to my neuro and rheumy, or just not mention it?  I just do not want them to treat me differently now, etc. 

sigh. 

Thanks.

J

[Jasper]

Most clinics have a medical records department and it is the medical records department which handles requests for medical records.  To my knowledge, the medical records department does not notify the doctor when a patient's medical records have been requested.  The doctors normally do not know if another doctor or clinic requests your medical records.

I agree with you that this hysteria surrounding opioids is complete nonsense. The vast majority of people who take opioids will never become addicted to opioids. Most people take them only if they need them and do not take them if they do not need them.

It is absurd and inhumane to punish people who need pain relief because a few people become drug addicts. It is unfortunate that most doctors do not recognize this,  but most doctors know very little about pain or drugs for pain relief. They also know very little, if anything, about addiction. If they knew anything about addiction they would know that the vast majority of people will never get addicted to opioids.

I also agree with you that is in inhumane to treat a person in pain as a criminal and make them jump through demoralizing and demeaning hoops in order to obtain some relief. Plus, the person is labeled and looked upon as a drug seeker. What ever happened to compassionate and humane care. It got lost in all of this hysteria.

[Jeigh44]

It is just a shame because I would MUCH rather be able to get pain meds from my rheumy or my neuro, instead of going to a PMC.   These drs. have known me for a long time, and I would feel more comfortable under their care.  On the other hand, I refuse to even ask, because of the way my neuro looked at me last time.   She literally looked at me like I was trying to buy crack off of her.  It was so crazy!  LOL

[irish]

There has been a lot of good info here for you to ponder over. The one thing I will say is that Pain nanagement clinics have been around for a long time and I think there has been more negative feelings about them in the last few years because of the epidemic of people being addicted to these meds.

The other thing that is disturbing is that they have not come up with pain meds that do not cause addiction. My hubby was put on Percoan for terrible back pain plus the fracture of 5 ribs (seen on cat scan) following a fall. He was beyond miserable and it took 3 trips to the doctor to get him some pain control. He was on it for several months as he was older and osteoporatic and healed slowly.

When it came time to taper off he had a terrible time. I am a nurse so I knew how to do it and we did 1/4 tab taper a day and it took us months to get him off. He said never again would he take the med. That is the way it is. He did not know it would be so hard. Vicodin didn't bother him plus it didn't do much for pain either.

Pain control is individual and hard to assess so that is why it makes it hard to deal with. The sad thing is that the family docs don't know a whole lot about pain control and also don't know much about using antidepressants in pain control. It takes sometimes 3-4 different medications taken alternately to maintain pain control. This way the dosage of each individual med doesn't have to be so high. Tylenol is often used as are thhe NSAIDS.

I would tell you to hold your head high and make sure people are aware of where your pain is and what it is doing to you. Do not let the medical community get to you. If they are making you feel like you have done something wrong, confront them in an aggressive but not threatening way. Let them know that you need help with your pain so you can work and enjoy life.

Shame on the medical community or any of our friends and family for making us feel guilty. Chronic pain is devastating and until one has experienced it they have not cause to place blame. I hope that you can get some help. Good luck. Irish