Painkillers, Pain Management, and Lupus
What Are Pain Medications?
Pain medications are medicines that relieve aches and pains. Each one has its strengths and side effects, and certain medications may be better at relieving some aches and pains over others. Responses to pain medication vary from person to person.
For many people, over the counter medications such as acetaminophen (Tylenol) and nonsteroidal anti-inflammatory drugs (NSAIDs) are very effective. They work well for symptoms including:
- achy joints
- muscle soreness
Nearly 80% of people with lupus use these medications to control their pain. Over-the-counter meds do not require a prescription and they have a decreased risk of dependence of addiction. However, they are not without side effects, which can be serious. You can read more about NSAID medications here.
The key to NSAIDs and acetaminophen is that they operate on aspects of the pain response that indirectly affect it. Primarily, they impact inflammation, blood flow, clotting and swelling.
Narcotic Pain Medications
In contrast to these over-the-counter options, powerful pain medications change how pain is detected by the body. These pain medications, known as “narcotic” pain medications, replace or interfere with receptors known as “opioid” receptors in the brain and body. This blocks the feeling of pain. These medications are very powerful and effective and are very good at relieving pain in the short term.
But, in the long term opioids are notorious for leading to dependence and addiction. Even when not abused, the body develops a tolerance to these medications. An increased tolerance means that higher doses are required to produce the same pain-relieving effect.
Narcotic pain medications include:
Although risky, these medications are often used in the short term (such as after surgery) for pain relief.
Opioids are a relatively common treatment for lupus. About 1/3 of people with lupus use opioids to manage pain according to a 2019 study. However, there is limited research into the value of opioids to provide relief for people with lupus or other rheumatic diseases.
Side Effects and Risks of Painkillers
Aside from dependence, tolerance, and a risk of addiction, narcotic painkillers and opioids have many side effects:
Drowsiness and impaired judgment: Opioids cause intoxication, as does withdrawal from opioids. This includes impaired or fogged thoughts, poor reaction time, and even hallucinations. Alcohol can make this worse, and people on narcotic painkillers should not drive or operate heavy machinery.
Gastrointestinal Distress: The opioid receptors are important to the regulation of the digestive system as well as for pain. And, opioid-based narcotic medications can interfere with the stomach and intestines. This can result in nausea, vomiting, and constipation. Additional fiber can help with these side effects.
Insomnia: While trouble sleeping and staying asleep is more often a symptom of withdrawing from the medication, opioid medications themselves can interfere with the sleep cycle in unpredictable ways.
Mood Changes: While the mood effects are different from person to person, restlessness, mood swings, anxiety, and depression are all potential side effects of opioid use and withdrawal.
For people using these medications, the pain relief is considered to be worth the side effects. Or, the course of the medication is intended to be too short to be an issue. However, even short courses of painkillers, for example, to help a patient recover from a major surgery, carry risks.
The best-known risk of painkillers is the risk of tolerance. As the patient’s body is put into constant contact with opioids, the body seeks to return to a balanced state. It senses that there is more opioids in its system than usual, and creates more receptors. The patient’s ability to perceive pain becomes more sensitive, and the medication’s ability to block pain becomes less effective. Over time, a greater and greater dose is required to achieve the same level of pain relief.
Addiction occurs as a result of tolerance. More medication is needed to achieve the same effect. At the same time, the opioids affect mood positively when they are in the system. When the body builds a tolerance, it starts to rely on the extra opioids from the medication to regulate mood. The body expects the drug. When it is not present, a person experiences:
- pain far more intensely
- decreased ability to manage and overcome pain
- Low, dark moods
This dependence on the medication becomes a desperation to take more opioids just to reach a basic and tolerable level of pain and a decent mood. Taking the drug is required to feel normal. As a patient’s prescription or available funds run low, a person may turn to opioid alternatives like heroin.
Opioid overdose is a slowing and stopping of bodily functions and it can be fatal. About 18 women die every day of a prescription painkiller overdose, according to the CDC. Overdosing on opioids is much more common when it happens as a result of an addiction.
The response to opioid overdose is improving. For example, Narcan is able to rapidly reverse an overdose and save lives. It does so by being an opioid agonist. In the aftermath of the overdose and Narcan delivery, people often experience debilitating withdrawal symptoms.
Because of these risks, doctors these days are very careful about prescribing narcotic painkillers.
Looking to learn more about the opioid epidemic? Check out the data and support services available through the NIH.
Problems with Getting Painkillers
For those who need these painkillers – whose pain does not respond to other medications – the risks of these medications can add hurdles to access. Plus, these risks and the opioid crisis have added a stigma to the use of the medications that is often unwarranted. Many people with invisible pain-related diseases find themselves judged as “addicts” and “drug seekers.”
Although they are still given to people with lupus who end up in the emergency department, it can be a challenge to get a prescription through other avenues. This affects the mental health of people with lupus. It may feel like you have to deal with the stigma of using these painkillers plus the underlying pain.
Alternatives to Painkillers
Non-medicinal methods of reducing pain have gained traction due to the opioid epidemic. Many Lupus Warriors may find these alternatives useful, particularly if they are weaning off of opioids.
A “placebo” is a term for when a patient is given a substance that they think will work like a medication. They are “tricked” into believing they are being given a medication, sometimes even given a pill, an injection, or an IV with a non-active substance such as sugar or saline.
Because they expect a result (or are at least aware that something is being done to help them,) a patient’s body actually releases chemicals and sets off neurons and body processes that actually causes that result to occur! We are still discovering how powerful the placebo effect can be. This is why many new medications and treatments are tested against a placebo, to ensure that the treatment is actually having a positive effect.
There has been research into using placebos as a form of reduction of opioid dose. Essentially, the patient is given a regular dose of opioids. In between these doses, however, they are given otherwise identical doses of a “fake” painkiller.
The practice is described as “dose extension,” because a single dose is administered over a longer period of time. The body has more time to recover from the influx of medication, so there is a lower chance of dependence and tolerance. Studies on this technique are promising, although it is noted that the side effects can be caused by placebo, too!
Following the theme of mind-over-body, meditation (mindfulness, transcendental meditation, and other forms) can be very helpful for people with lupus. For one, meditation reduces stress, a factor in lupus inflammation. Also, it also helps decrease the perception of pain.
Research has shown that meditation improves the ability of people to live independently, increases focus, and manages depression and anxiety. There are many different methods of meditation and meditative practices. Look for a style that works for you.
Massage and Acupuncture
Alternative medicine can have real effects on pain and blood flow. Massage and acupuncture can provide pain relief via less-expensive procedures. (Note: Your health insurance may cover alternative treatment options.) They also provide another practitioner to listen to you and provide support.
Though recent studies have shown some therapeutic benefits, they may be working mainly through the placebo effect. Additional research is still needed to fully understand the benefit these treatments can provide. You can read more about acupuncture here.
Supplements and homeopathy are often less effective and can potentially be dangerous. If you are looking for alternate pain relief, massages such as reflexology are a little more scientifically supported.
Exercising is great for people with lupus, and it releases natural opioids called endorphins. These opioids are not addictive, but do create a feeling of well-being and a reduction of pain. While exercise can be difficult for people with lupus due to pain, the benefits are huge overall. Read on for some good, low-impact exercises and stretches for people with lupus.
You can read more about strategies for Lupus Warriors to relieve pain, here.
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9 thoughts on “Painkillers, Pain Management, and Lupus”
why would supplements and homeopathy potentially be worse?
NSAIDS are not for me because of the possibility of kidney damage as I take medications to lower blood pressure. An arthritic ankle causes continual pain and limits walking as an exercise. the lupus meds, hydrochloroqinine and methotrexate have certainly eased the fatigue and other other joint and muscle pain. Any suggestions re ankle pain management would be welcome .
How is a person that has Lupus,,Sjogren , Arthritis,etc,supposed to function when denied the necessary pain medication that is needed?
I have the same problem. Also DDD. PAIN EVERYDAY. The rhumatoligist won’t prescribe pain meds. My elbow and the muscle feels like a bruise to my hand. Ankle is swollen, and a non-stop lower disc pain.
One thing that works well is Bowen therapy. Too hard to explain how it works just youtube it. There are many videos there. 🙏💜
I have the same problem. They have no idea of what kind of pain we really have.
My body/joint pain is and has been managed by Tramadol, and Gabapentin for the last 20 years at the same dosage. I am very fortunate in using my mind to divert any increase of pain. For the last 10 years, I have supplemented my pain management program with the purchase of a Hot Tub and use it 2x/day. I use it in the mornings upon awakening to loosen my joints and at night before bed in achieving relaxation and to reduce soreness. For the last 4 months, I have been using CBC oils to relieve injury to major and minor joints x2/day as needed with great success!. For the past 3 months, I will take Tylenol extra strength (500mg.) /24 hrs. to manage my background cluster-like headaches. Note: I had to stop taking Mobic five years ago due to gastrointestinal bleeding.
Years ago, in the ‘90’s, I took Tramadol daily as part of migraine management, while also taking quinacrine for lupus. It’s just astonishing to me that Tramadol is now considered an opioid because my doctor originally prescribed it as a safer alternative to aspirin, which was causing stomach pain. Quinacrine on the other hand, is hardly ever used anymore, for good reason. It turned me orange. But it sure made me feel better! I’ve been on Plaquenil for a few years now and can’t tell that it’s made any difference. Hm!
I know that I am blessed with mild Lupus symptoms. For me I have found pain relief from Using Motrin nightly and any break through pain CBD tincture has been very effective. I wish I I insurance companies would cover the cost of our use of CBD products.