Pain Management

Pain Management

I’ve recently been having a particularly nasty RA flare-up in both ankles (especially the right one) and my right foot, which is maddening and depressing and all of the other emotions that go along with a major flare-up. I’m taking prednisone again, which doesn’t make me happy–I had been completely off of it for four months. But what does make me happy is that it seems to be slowly helping, so that’s a relief. Two weeks ago I had to leave work early because the pain and throbbing in my foot was so bad; it was the first time I’ve ever left work early because of my RA. When I got a new prescription for prednisone filled, I also got a prescription for Vicodin–but only a small about with no refills. In general, I don’t usually take it that often or regularly unless I’m traveling and/or doing a lot of walking or having to be on my feet for extended periods of time. With this latest flare-up, I put in the painkiller request with my doctor’s nurse and I got it filled, no problem. Yes! Relief! However, my last Vicodin supply isn’t proving to be enough with this stubborn foot and ankle.

So what do I do? I’m still taking the prednisone and I haven’t been able to start tapering down yet because my ankle and foot are still inflamed more than “normal.” I’ve also been getting terrible headaches again and jaw pain, which are probably stress-related (from dealing with work stress and this flare-up?). Basically, I’m in a lot of pain and I’m out of painkillers. And, I’m afraid to call my doctor and ask for more because I don’t want to get reprimanded or look like I’m starting to have a painkiller addiction. So far my rheumatologist has been really great about helping me out with medications and refills so I have no reason to be anxious or hesitant to make the phone call, right? But I am. There is a strong stigma attached to pain medication regarding addiction and I’m sure I’m not the only patient who experiences or fears it in some way.

Referred to by my rheumatologist, I recently started going to a pain management clinic for the first time, through Fairview Health Services. It’s a pain management “team” that I’m involved with now; I see a doctor, a psychologist and a physical therapist all at the same clinic. So far I’ve only had one appointment with the doctor, which was an evaluation consultation and seemed to go pretty well. We talked a lot about my own health problems and how to best manage chronic pain, especially through stress reduction, exercise, and meditation instead of pain medication. I agreed with him about focusing on those things instead of relying solely on drugs. He did, however, prescribe a new muscle relaxer for my headaches and a topical gel for my ankles. So far neither of those seem to be doing much, unfortunately. But, I have now seen the psychologist there twice and the physical therapist twice, and I feel very positive and hopeful about those appointments and my future appointments with them. I fully believe that health and wellness is not just your physical problems, or one physical pain or issue, but that your whole body, mind, and soul are connected and need to be taken care of to ensure optimal health. So while Vicodin does provide a lot of relief for me during especially tough bouts of pain, I do want to be working on other things to help decrease my pain and make me feel better and healthier in general–exercise, good nutrition, good sleeping habits, stress-reduction.

During my first visit with the psychologist at the clinic, we talked about the stress I’ve been dealing with lately feeling misunderstood by family and friends (co-workers, bosses, and even one of my doctors) due to living with the “invisible illness” of RA. He gave me an article titled, “Surviving A Loved One’s Chronic Pain: A Guide for Family and Friends of Pain Patients” by David Kannerstein, PhD and Sarah M. Whitman, MD. The article is full of a lot of good information to help people better understand the nature of chronic pain and the issues that both the patient and loved one face when dealing with pain. If you can find a copy of this online somehow, I recommend reading it and sharing it with others. One of the issues the article touches on is treatments for chronic pain and the risk of addiction from pain medications. A common misconception regarding pain treatment is that many people assume that if you’re taking painkillers you’re automatically going to get addicted to them. While it’s certainly possible to get addicted, that’s not usually the case.

Taken from the article, here are some useful definitions:

Addiction: Addiction is a disease with genetic, psychological, social, and environmental factors influencing its development and symptoms. It consists of behaviors such as poor control over drug use, compulsive use, continued use despite harm, and craving.

Physical Dependence: Physical dependence is when the body is used to a certain medication or drug, and withdrawal symptoms occur when the drug is stopped or decreased in dose.

Tolerance: Tolerance means that the body gets less effect from the drug, or needs a higher dosage to get the same effect.

According to Kannerstein and Whitman, addiction involves the abuse of a substance while physical dependence and tolerance do not. Sometimes patients using pain medication or who have used pain medication in the past just need more for a period of time to help manage their pain. To some, this may look like the behavior of an addict and it’s sometimes called “pseudo-addiction.” So how can you tell real addiction? Some signs that may point to addiction are if the patient repeatedly says he or she has lost prescriptions, he/she gets the same medication prescribed by different doctors and/or gets prescriptions filled at different pharmacies, or gets medication off the streets. But just because you need pain medication or more pain medication doesn’t mean you’re an addict or that you’re going to become one.

A good friend of mine who also has RA has had the worst time trying to get her rheumatologist to prescribe her any narcotic painkillers, even though she is in serious pain on a daily basis. She has tried other pain medications in the past which haven’t worked. I’ve listened to her frustrations about feeling helpless and angry and confused about what to do and I feel bad that her doctor doesn’t seem to listen to what her pain needs are. Hopping around to different doctors until you can find one who will dish out the pills isn’t exactly a great idea–and it’s not easy to just find a new rheumatologist anyway. I know her personally and I’ve listened to her tell me about her pain for a long time and I know that she is not just some pill-seeking drug addict. She needs relief! Just like I need some relief right now. I don’t really like the idea of taking narcotics and my hypochondriac-self worries enough about the dangers of addiction. But sometimes Tylenol and ibuprofen and even Tramadol don’t cut it (I realize that Tramadol is also a narcotic, but isn’t as strong as Vicodin or Percocet, etc.).

Right now my head and jaw are throbbing like crazy and I want to cut off my right ankle and foot until this prednisone starts to fully kick in (or until I’m forced to increase the dose). I’m also helping to photograph a wedding this weekend during which I’ll be on my feet for eight hours. And the next night I’m photographing a concert, which means more hours on my feet. At the end of those nights I’m going to want to die if I don’t have something to ease the pain. Should I feel this anxious about calling my doctor to ask for a Vicodin refill? I don’t think so, but I do. I’m going to call anyway. I need to be able to function like a semi-normal person right now and I can’t do that while having debilitating pain–hopefully my doctor will understand.

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Comments

View Comments (11)
  • 2b8x55g
    3 years ago

    I have had RA for 15 years, I believe and now also have been diagnosed with psoriatic arthritis or PA. Pain management has been one of the best things I have done. After trying methotrexate, prednisone and Kineret which wasn’t started immediately due to the fact RA, as everyone who has it knows isn’t always textbook. I had my rheumatologists scratching their heads. Never had swelling, nodules etc. Blood work with a continually rising RA factor was just not enough> Now of course there are other blood work tests ccp, etc that help to verify this disease is present. My ccp, or crp is still higher than the highest factor and no one knows why. Severe and aggressive was explained to me that is what these factors in blood work mean. It’s very hard to find a rheumatologist and a good one even harder. At pain management I was given tens, physical therapy, nerve tests, sleep studyunderstanding and most importantly one of the best Dr.s I have ever met. He has been overseeing my treatment for fifteen years. Pain management isn’t only about giving out medication. It’s an integral part of my team. My family physician, rheumatologist, physiatrist, orthopedic specialist, (forgive spelling) as well as several other specialists I have seen as a result of my association with pain management. This can be an invisible disease, and often met with skepticism from co-workers, supervisors, family members, as well as friends and acquaintances. I have fibromyalgia a disorder that no one believed existed as well. I’ve had shoulder surgery due to the damage from ra. Rheumatoid arthritis is a very misunderstood disease. I’m so grateful for the staff and doctors I’ve met thru pain management, it gives you a chance to be seen by many specialists in my case that are part of his practice. I’m also grateful for forums like this, to be able to talk to people who truly get it. Pain killers are only a small part of managing the fire (pain)and may not be necessary for all patients, and close monitoring by medical professionals I welcomed. The more knowledge the more empowered, to manage this disease. Reading some of the dreadful experiences others have posted prompted me to post this to explain “Pain Management” may be able to offer other avenues of help.

  • Amz
    4 years ago

    It has been a long long…long road…I was diagnosed with JRA when I was 18 months old. I was even a guinea pig for a “new” drug for treating RA known as Ibuprofen. I was given gold shots every month. I went into remission around the age of 6. I led a very active athletic life until about 10 years ago. I am 44 now and the last 4 years or so have been very tough. I don’t want to bore you with details but I have seen that physician who would not prescribe pain meds because he stated I would become an “addict”…I have been told I had fibromyalgia and prescribed Cymbalta…I have been treated by a physician who gave me all the pain killers I should have needed…you name it I have been treated by it! I read blogs where people seem proud they aren’t on painkillers and seemingly snub those of us who do. I have been treated like a criminal when I ask for a refill early by only a few days (I have so many meds I make a weekly box…for a narcotic that obviously cant happen! Duh!) by pharmacies. It has taken literally years to get the right Rheumatologist, the right pain management clinic (who is in the same building as Rheumatologist btw), the best orthopedist, being fully insured, being real with my own capabilities and being honest with my family and friends that I am NOT unreliable, my disease is! I have had neck surgery, knee surgery, a heart cath (which was totally normal, thank you Jesus) and am now looking into possible hand and wrist surgery.
    I hate the prednisone worse than anything. I have gained weight that has been down right impossible to lose.
    I ask those of you who aren’t on narcotic pain relief to be careful of your verbage because those of us that do need that med and therefore that relief are not proud of it either but it is what it is. I take it mostly according to directions and there are times I take a bit more and times when I take a bit less. I see my pain management physician monthly and am very honest with my level of pain. I actually tell very few people the pain meds I am on…recently, a friend stated she was jealous of me! Because of the pain med I was on! Can you imagine??? I would give anything to not need it but I am glad it is available because I would lead a very isolated life. But that is not an option. I won’t let it be.
    I hope one day to go back into remission and be off of everything myself but in the meantime, every day is a new day and most often a new challenge.
    Let it be known this disease is not a one size fits all. And neither is our treatment. Therefore, neither are the meds we are prescribed. Angela, call your physician. Ask if they have a pain management physician they would recommend. With the new laws most physicians are reluctant with good reason to give more than prescribed. They want you comfortable at the same time. It gave me such relief not only physically but in every other way to go to a Doctor who just treats my pain.

  • Cecilia Jankura
    5 years ago

    Well I am certain that I had “physical dependence” on prenisone. I have been on a series of meds over the 4 years since my diagnosis of RA. Always they used prednisone in the interim as I adjusted to the meds. Everytime I have weaned off of the prednisone, the drugs failed to work. I finally made the decision not to go back on prednisone after this last excruciating weaning off of it. I went off very slowly, the last month on a mere 1/2 mg/ daily. Then, 2 days without any in the mix and boom – back to flare ups like I wasn’t even on any meds at all. I have gone 1 1/2 months without it and today may be my first day without needing Tylenol or other assists for the pain. I am learning that I needed to adjust my activity level and workload to match the non prednisone induced, false sense of well being. It will take a while but I have a strong hunch that by tempering my activity to match my “real” condition, I will eventually reach a happy medium and not get so many flareups.

  • Nancy N Sallee
    5 years ago

    Your recent blog really resonated with me. Pain management is such a challenge, especially when the condition is invisible like RA. I dread the next flare-up. Sometimes I am in such agony that I cry, rock myself, and chew my fingernails until they are bloody.
    The things that have helped me: Stress Relief! I am fortunate to have accrued enough years as a psychologist for a large corporation that I retired in May 2013, even though I am still relatively young. I attend an aquatics class specifically for arthritics at least three times a week. This not only helps with stress and is improving mobility in my hips, but I have met others who are contending with this invisible monster RA. We are each others’ support system. Even though I am a psychologist, I have a therapist as well. I visit with him at least weekly. I can share my very negative feelings with him and not burden others.
    Drugs: Steroids drive me bonkers–that’s a clinic term. I become so depressed and anxious that I am miserable and can’t even enjoy a reduction in pain. When my pain gets absolutely horrible and my fingertips are bleeding I will take a hydrocodone after calling/telling my husband. I strictly limit my use of this addictive drug. I use 600mg of Motrin 3 times a day on a regular basis to assist with inflammation. I also have a good response to heat and have special mitts for my hands and feet. For the pain in my face and head I depend on acupuncture.
    RA meds–I use Plaquenil (hydrocloroquine) twice a day which has cut my everyday pain by 50% and flare-ups seem fewer–Thank the Good Lord!
    I have had a good response to physical therapy for my ankles, but insurance only paid for eight weeks of therapy.
    Prayer: I have a great group of prayer warriors who pray for and with me.
    I would say that RA is a complex disability that needs a complex group of answers. Keep the communication going with your doctor, family, co-workers, friends, and within the RA community.

  • Patricia
    5 years ago

    You mentioned the steroid and the pain killers, but what RA meds are you taking??? I have been lucky, I guess. I was diagnosed last Autumn (2012) and was started (by a rheumatologist) on one Prednisone pill a day for 4 or 5 weeks, along with Methotrexate. Then I was told to cut back to 1/2 pill of Prednisone a day for about 8 weeks. Then I came off that all together and have never needed the Prednisone since. In the Spring, he added Hydrocholorquine to my Methotrexate. I take 7 Methotrexate 1 day per week; I take 2 Hydrocholorquine daily; plus, to help with side effects, he has me take Folic Acid daily. This has worked well for me, and I’ve been in remission since late Summer this year. I know I could experience a flare and go out of remission, but so far, so good. I also had 6 or 8 weeks of PT to help strengthen my leg muscles and ankles back in January of this year. I, of course, continue to take my pills as prescribed, but take NO pain meds. I can’t take strong narcotics anyway; the side effects I experience from those are much worse that living without the narcotics (out of body experiences and trouble breathing…not worth dying for!) I know not all people respond to the same meds the same way, and I hope you and your dr. find something that works for you. Good luck!

  • Janet Lemay
    5 years ago

    You are fortunate, but please understand that if you progress to Level 2,3 or 4…you will need stronger treatment & stronger pain meds…. It’s not an uppity thing to say NO not me! In 3 yrs I have arrived to moderate/ severe RA & Angela should not be embarrassed !!! It’s OK- we do what we must to live & stay positive & love life (or try!).
    Hang tough Angela & all that are ready to chop a limb! We are hoping for a catalyst, that change that restores our vision & zest for our passions. Take the darn pain pills for what time it helps, always re-evaluating your condition & adjusting the meds. Good luck to all.

  • Susan Johnson
    5 years ago

    Physical Therapy helped me a lot with my ankle. They use a ultrasound unit to get the steroid into the ankle. They work to get the swelling down. There are also lidocaine patches and steroid patches you can use at home. My hot tub jets and heat instantly take away my pain and can give me relief when I am at the end of my rope. I was started on Gabapentin (Neurontin)I am sleeping better.

  • Lily
    5 years ago

    I agree with you Angela. When one experiences the kind of pain we get into, there’s no other option but to use painkillers. That doesn’t necesarily mean that we become addicted to them. Living with pain every day makes life very hard so we need to be able to use pain medication as needed. My experience with a pain management clinic was not very good. The first thing was a test of the nerves in the arms and legs to see if I had neuropathy which was very painful and they could not complete the test because I could not stand the pain. After that, the doctor told me the only thing he could recommend me was pain medication. The good thing was that I asked the doctor to send me to physical therapy and I ended up having two months of therapy that helped me to ease the pain and learn what kind of exercises I can do at home to feel better. I have all kinds of painkillers at home but I do not use them because they make me so sick. I throw up and I get migraines from it. The only one that I use, and only if the pain is out of control, is Tramadol. But what it really worked for me was Prednisone which is not a narcotic. I felt so good with no pain at all that I thought I could do anything. I just started going to the rheumatologist and I’m looking forward for the next appointment to see what’s next after he gets the results of the tests. I believe that we need to try the different options out there to improve the quality of our lives.

  • Norreen Clark
    5 years ago

    I also have been on 40mg of prednisone for a month now. The reason is after having RA for 34 years I’m finding out I have Rheumatoid Vasculitis. Immfulmation of the blood vessels. Never knew this could happen. I started at the age of 27 and now being 61 I’m very lucky. Never taken pain killers. Most medication make me sick. Prednisone gives me a headack and what I do is when I get up at 1:00 in the morning to go to the bathroom I take 2 tylenol that get rid of the headack. I take one melatonin 1/2 hour before bed time to help with the sleep. Also I have an affirmation I say daily. It is (all is well, everything is working out for my highest good, out of this situation only good will come, I’m safe ). Words spoken over and over make a difference on your healing. No different if you kept saying over and over something bad. Stay positive at all times. Your feet hit the floor in the morning that’s a good start.

  • Karen Blumenshine
    5 years ago

    You could try a Tens unit. I have one and it helps when the pain is to bad.So sorry you are going thru such a bad time. Thank you for all your blogs…really helpful

  • Janet Lemay
    5 years ago

    What is a tens unit?

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