Pain Management & CF: The Dreaded Dispute

[mollyj]

Hello All--

I am new to this website but very experienced when it comes to chronic illness, especially Cystic Fibrosis. I am trying to be proactive with my health & join groups for support etc. I have recently joined one in-person group in my hometown for people with chronic illness who wish to incorporate Mindfulness into their daily lives, also follow some CF blogs & have now joined a couple of forums like this one, which seems great!

Listen, I could tell you about myself all day but I won't put you through all of that! I will offer pertinent information to my topic of discussion but I'll spare you all of my gory details So, I am a 33 year-old female who was diagnosed with CF at birth, after becoming very ill. I have Double DeltaF508 mutation. I have all the glorious side illnesses that can accompany CF such as CF-related diabetes, CF arthritis, multiple sinus surgeries (20 to be exact), breathing issues, have tune-ups a lot etc. My current issue I am struggling with is the dreaded topic that doctors do NOT want to address, in my experience, and that is pain management. What I would love for you to share with me is if you experience chronic pain like me, who controls/manages that aspect of your health?? I'm in a pickle because I currently have one doctor prescribing my pain medication, which is Oxycodone & Methadone for pain control. This doctor is not an expert in pain management by any means and she started prescribing it for me with the intention of me getting off of it and tapering down but now, as years have passed, my pain has other plans in store & has become way more chronic than just acute. This doctor wants to meet with me this week so we have an appointment set up & I just have a feeling she is going to say this is getting to be too much for her to handle & that I need to see an actual doctor trained in this area. I go to a big University so you'd think that would be common, right? Well, not so easy. I had used our Pain Management Clinic in the past for low back pain & they gave me a couple epidurals & then said there was nothing else they could do for me & in addition, did not have anything to offer for my head/sinus pain that I suffer from daily as I have very infected sinuses. And this pain clinic does NOT believe in the use of narcotics in controlling pain. And my CF doctor believes I have pain and doesn't doubt that but he also tends to say he is not a pain management specialist and is not comfortable being in charge of that aspect even though the pain in part, is due to my CF. My CF dr. is pretty much unofficially my primary care doctor so I don't have one of those I can turn to. So now what?? I do feel like it's feasible to try & take as few pain medications as possible so that in the future, they still work for me as I will most likely get more & more sick & will always need some form of pain medication. I also believe in using other methods to help control my pain like mindfulness meditation, breathing, rest, ice packs etc. but those only take me so far. When I'm at work for a few hours each week, I can't be taking constant breaks due to the pain & that's when my pain medicine is so beneficial. Or when I need to do treatments but do not have the energy or wellness, pain meds. allow me to get through that. So my question is: now what??? Who is in charge of your pain management, if needed?? What do you all think is reasonable? I would appreciate any and all information/suggestions you may have on this topic as I think it's becoming increasingly difficult and worrisome on the providers' side as there's so many addicts out there. I'm very aware of that but I also recognize that I can only suffer so much before it becomes unhelpful NOT to take something for it. Oh and just in case you're wondering, I do not live in a state where Medical Marijuana has been legalized.

Thanks so much for reading & responding! I look forward to hearing your thoughts & experiences.

Molly

 

[kenna2]

I'm sorry you're going through all this. I know many of us are and it is frustrating. My doctors are very good and comfortable at prescribing pain meds for me and understand why we need them. However, no matter what is written for me, they never give me refills and want to see me if I still feel bad. I personally have seen a pain management person for really bad headaches that I used to get and couldn't take anything for it. I was treated with acupuncture, massage therapy, and physical therapy. I can tell you it was amazing and really worked. I do know a lot of CF patients do get massages regularly and some have seen a chiropractor for their pain as well. Now if I have pain, I try stretching, massage, heat, hot bath with therapy salts, or icy hot patches. I also suffer from depression and anxiety as well so I might sometimes use Ativan to help calm me down or I will use my oxygen machine that I have at home to help with pain also. Sometimes I've found if I'm in pain, calming myself down will help get me to a level where I can mentally bring down my pain to a level where I do not need anything for it. I try not to take anything at all if possible because of my liver issues. My pain level has to be an 8/10 before I take something. If you've tried all these with no success then my advice would be to get a second opinion. Look into another Pain Management doctor/ clinic. It never hurts to have a fresh set of eyes look over things. Best of luck!

 

[kenna2]

Ok well since days have gone by and my post still hasn't shown up (i'm sure it will at some point lol) I'll give you the short version. My CF team manages my pain. They are very good about it too. However, if you feel you are not being listened to, get a second opinion. It never hurts to have a fresh set of eyes and opinions.

 

[LittleLab4CF]

Molly,

Welcome to CF.com and thank you for the story. I too would like to hear about others like you and your struggles with pain management. It strikes me that most CFers are dealing with some level of chronic pain. It comes as no surprise that 9 out 10 visits to a PCP are about pain in the general population. For cystic fibrosis diseases like diabetes, malnutrition/malabsorption issues that translate into arthritis, osteopenia, osteoporosis, and several painful issues that come from our dysfunctional GI system. Headaches, sinusitis pain, bronchiectasis, referred lung, liver, biliary tract pain and the list of things that are absurdly painful are not secondary to the disease, we are looking at quality of life and pain management is paramount.

For everybody who battles with abdominal bloating it's more than likely that they are dealing with pain. A bloated belly is just the superficial indignity, very swollen tissue like the large and small intestines are so tender that the normal pushing and shoving, squeezing and gas involved in digestion can be disabling. It surprises me how many doctors are unaware of the difference between an uncomfortable bowel movement for a healthy person and the pray to die experience when the same thing happens to a CFer.

Twenty sinus surgeries might be a record. Unfortunately it might not. What on earth is going on to require one surgery let alone two, ten or twenty? I was told that I needed complete sinus reconstruction when I was 15 or 16. Obviously I was miserable and desperate for relief but I really wanted to know what had done so much damage to require surgery. It's astonishing but pathogens that like the moist confines of the nasal cavities are eating the mucosa, cartilage and even bone. If nothing else was wrong, this would potentially be the cause of severe pain from pressure, infection and headaches to justify pain management.

After reading your current situation with your pain management, I would love to see you with a pain management specialist today! This is only going to happen if you are VERY LUCKY. Five years ago I was writing on this site about the political winds changing direction regarding pain management. I was being sarcastic and a bit flip about it but I didn't know how correct my prognostication was about to be.

The CDC, of all agencies that have absolutely no business sticking their noses into it, declared that there is an epidemic of accidental deaths from prescription narcotics overdoses. Not long after, the annual meeting of the (2012?) National Governor's Conference, attendees came back with their orders. Each state was charged with drawing up policy for the reduction of these deaths. Typical for a government agency, I attended a seminar where the program administrator cheered at the net reduction in opioid prescriptions over the last program year. She failed to note that accidental deaths from overdose hadn't changed. Translation: due to the reduction in opioid prescriptions, more people are being under treated or going untreated. In metro Denver, where I live, the sale of diverted prescription narcotics has become a vital part of pain management. A blog post on this site discusses problems with prescription drugs diversion.

In Colorado where I live we really have a crisis, good heavens we are ranked #1 in the nation!!!! Holy cow, we have a serious problem and as #1, THE TOP STATE, leading the country in accidental prescription opioid overdoses, we had to act fast. NOT! The only problem is that Colorado shares its status with ~14 other states and the best state wasn't #50 but about 10 states were ranked fifth!!!

There is an increase in narcotic overdoses around the U.S. It is serious and the answer is not as simple as contriving to confound Doctors into scaling back on narcotic prescriptions. My wife and I attend functions formed to prevent accidental narcotic overdoses. One was founded by parents of a boy who swiped a powerful narcotic pill from a grandparent and overdosed. This isn't uncommon, and it isn't stupid, it's simply human and its founders, sincere. IMHO this doesn't warrant this insidious government interference in the exam room.

Your correct to fear a confrontation with your Doctor. She has pressure from the regulatory agencies I have been rattling on about. I hate to say this but you should be treated by a Doctor specialist in PM. The level of pain based on the opioids you are taking says so as well. I don't want to second guess your Doctor but I have been taking narcotics for the better part of thirty years and have been educated through my Doctors and reading research papers and medical books on the subject.

Keep in mind that your Doctor is interested in keeping you upright, productive and possessing excellent quality of life. The opioids you are being prescribed worry me. Methadone is a powerful narcotic. The term "powerful" needs explanation. A large amount of a weak opioid can equal a small amount of a powerful opioid. Another term important to narcotics is "half-life". It takes time to reach the maximum amount in the blood stream depending upon delivery, oral, IM or IV. Once the peak amount is reached, the time it takes to lower the concentration by 50% is called the half-life. When the goal is round the clock pain control, half-life along with the time to maximum serum concentration determines the time between doses.

Methadone has a half-life of 12 to 49 hours, independent of the delivery method. When you combine oxycodone with a 6 hour half life, you have no idea when your medication is peaking or dropped low. All it takes is accidentally double dosing and a drug that won't peak for a day could hold a deadly surprise.

Anyone taking narcotics on a chronic basis should know the strength and half-life of their respective opioids. If long acting narcotics are prescribed, consider asking for a Naloxone injector in the off chance that you or your loved one overdoses.

Remember that you have multiple sources of pain and both pain and narcotics are additive.

Good Luck,

LL

 

[Michaelp397]

Hello Molly, I am Michael/Male/31 with CF. I was also diagnosed at birth and have had many surgeries on sinuses, for bowl obstruction, hernia, Ect. I have the F508del mutation. Sorry for what your going thru but I completely understand because I am in the same boat. I'm currently taking methadone for pain management. But the prescriber is not a pain management specialist. Also my CF team which is at Baptist Hospital won't treat my pain issues because they say that's not their speciality. So I am currently working with a pain clinic to get in and be seen and am praying that I will be accepted as a new patient there. I just don't know what else to do/where else to turn. I would try to get into a pain clinic to manage the pain you are having. As you probably know up until recently ( last 10 yes or so) Cystic Fibrosis was not considered a painful disease and treatment with opioid pain medications was not even considered by many doctors years ago. Thankfully that has changed.