In 2010, I was quoted in a Standard Newspaper article saying, ‘It only hurts when you cry,’ about my lupus diagnosis. Oh, but it hurts! Pain and inflammation are often the first signs of Lupus. With time, people living with Lupus experience so much pain, that they begin to make jokes and laugh about it. But when it hurts, it hurts.
The last few days I’ve been experiencing incredible muscular skeletal pain, alongside a headache from hell. The usual NSAIDS didn’t work, so doc tried slightly stronger meds, then upped up to Tramadol before hooking me up to a corticosteroid + painkiller + rehydration combo IV.
By then I hadn’t slept more than 8 hours in 5 days. I was in pain, a little manic and frankly driving everyone around me nuts. I couldn’t work out, it hurt too much, and honestly I didn’t have the concentration to follow through with an hour of organized exercise. I read to distract myself, but I was writing way too much. I often write like crazy when I’m manic. I’m actually shocked that what I wrote actually makes sense.
Finally, doc decided to give me a dose of bromazepam, and things started to slow down. I’m still in so much pain the idea of getting out of bed is torture in itself.
Even when major organs are not involved in a flare, Lupus pain can be so debilitating it becomes impossible to keep up with chores, work routines and day to day life routines. Pain changes you. It makes you overthink simple decisions. It makes you difficult to deal with. It can also often create a sense of paranoia which is hard for those around you to comprehend.
It is not uncommon for people with lupus to experience muscle aches and pain (myalgias) or have inflammation of certain muscle groups (myositis), which causes weakness and loss of strength. More than 90 percent of people with lupus will experience joint and/or muscle pain at some time during the course of their illness.
Muscle aches and pain may be from symptoms that happen when your body is responding to some type of inflammation, from muscle atrophy (weakness) or from a true myositis.
In my case, I have Lupus, Scleroderma and polymyositis, a crossover condition known as Mixed Connective Tissue Disease. Inflammation, scar tissue and inflammation and weakening of certain muscle groups causes pain in my mid section, rib cage, spine, waist and joints. Muscle weakness can also cause lack of coordination which can result in accidental injuries.
Pain medicines are helpful, and in many instances necessary. It might be necessary to consult a neurologist for help in pain management. But, because there are always risks and side effects with medications, it is a good idea to explore other approaches to pain relief.
Joint and muscle pain can benefit from heat and/or cold applications. Moist heat soothes painful joints much better than dry heat; soaking in a hot tub, sauna, using a moist heated towel, or taking a hot shower can be helpful. Ice or cold applications are advisable only for strained or twisted muscles or injuries. Follow the RICE (Rest, Ice, Compression, and Elevation) method to relieve pain, reduce swelling, and speed healing. Begin right after the injury occurs and continue for at least 48 hours.
Behavioral techniques, such as progressive relaxation, focused breathing, low-impact yoga and guided imagery also can be effective tools for pain management. By directing your mind’s attention away from the experience of pain, these methods help to relieve the stress and tension that can actually make pain worse. These techniques are safe and easy to do, but they also allow you to take control of the pain, rather than just reacting to and suffering with it.
Personally, learning simple yoga movements alongside focused breathing helps me deal with certain pain levels before resorting to medication. As a rule, pain meds are a last resort.
Alternative healing practices such as acupuncture and acupressure, biofeedback, and chiropractic adjustments are used for pain relief and may be effective for you. Please be sure to discuss any alternative treatments with your rheumatologist before start them. (For more info on pain and lupus, visit lupus.org)
In general terms, regular but moderate exercise, a balanced diet, proper rehydration and enough rest can help you manage pain better. I’ve found that strengthening my core has helped reduce waist and spinal pain. Stronger muscles means less incidences of tendinitis. But make sure you start working on these with a trained professional who understands lupus.
One challenge for regular exercise for Lupies is the risk of inflammation as a result of overworking or even simple lactic acid build up in the muscles. So go slow, do just enough and tomorrow is another day.
Follow SheblossomsKE on Facebook and @Sheblossoms on Twitter for daily lupus conversations. The Lupus Foundation of Kenya runs a monthly support group meeting and has resources that can assist you identify helpful doctors and health care support.