If you have fibromyalgia, you know what pain is. This chronic disease is mysterious and not fully understood, but we know that it’s real. People suffering from FM even ten years ago were often told they had a mental health issue and not real, physical pain. Research has proved that viewpoint to be wrong; we know from brain scans that the pain of fibromyalgia is real.
This doesn’t mean, though, that we have solved all of the mysteries of fibromyalgia. For example, does your pain also include twitching muscles? Worse yet, do you have large involuntary muscle movements that prevent you from living a normal life? If so, you could be diagnosed with dystonia, and although not recognized as a part of fibromyalgia, many people with FM have this condition too.
What is Dystonia?
Dystonia is another mysterious condition, just like fibromyalgia. Causes are uncertain, but what we do know is that if you have dystonia, your muscles contract involuntarily. This means you may experience twitching muscles, spasms, or twisting muscles. These symptoms can range from mild twitches to moderate spasms and excruciating and unrelenting twisting and spasms.
Cervical dystonia is a particularly uncomfortable form of this condition. It involves spasms in the muscles of the neck that cause the head to twist to the side and sometimes move backward and forward. This repetitive motion has been described as exhausting and it can also result in frequent migraines.
What Causes Dystonia?
Medical researchers have so far been unable to unravel the mystery of what causes dystonia. Often there is no definable trigger, although it does run in families so there is likely a genetic component. For some people dystonia is triggered by another condition like Parkinson’s disease, Huntington’s disease, traumatic brain injuries, stroke, brain tumors, and infections.
Whether dystonia is related to fibromyalgia is uncertain. There are plenty of cases in which people with fibromyalgia also develop dystonia. Both are related to the brain and nerves. In FM, your brain is not responding in the normal way to pain signals, while with dystonia the nerves in the brain that control muscle movement are out of whack. It is likely that the two disorders are connected or that one can cause the other.
How to Relieve the Twitch
Of course, as with FM, there are no known cures for dystonia. There are treatments, though, and they work for many people. The best way to ensure you get the best treatment for your dystonia symptoms is to work with your medical team. Make sure everyone knows about your dystonia diagnosis, from your primary doctor to your specialists to your therapist. Only with all of the information can they all work together to help you.
Medical treatments are the standard first approach to treating dystonia, but not every approach works for every patient. Don’t be frustrated if one treatment doesn’t bring you relief right away. It may take time or another approach to make you feel better. Here are some of the common medical treatments for dystonia:
Botox. That’s right. The injection that erases wrinkles can also help soothe your twitchy muscles. Botox is a toxin that temporarily paralyzes muscles to bring you relief from the involuntary contractions. The effect doesn’t last forever, so you need regular injections.
Medications. There are several prescription medications, like levodopa, carbidopa, tetrabenazine, and others that help some patients with dystonia.
Therapy. Different types of therapy can bring relief to your muscles. These include traditional physical therapy, speech therapy if dystonia is affecting your vocal cords, and sensory therapy.
Surgery. Only when other treatments have failed and the symptoms of dystonia are overwhelming will your medical team recommend surgery. One procedure for dystonia involves implanting electrodes in the brain to stimulate it at a deep level. This may help control muscle contractions, but there are risks like infection, strokes and paralyzed speech.
If you like to try things outside the normal range of western medicine, many dystonia sufferers (and fibromyalgia sufferers as well) swear by alternative medicine. Most of these techniques aren’t drastic or scary and they’re low risk so there’s no real reason not to try them:
Massage, acupressure, and acupuncture. Acupuncture is a tradition of Chinese medicine and involves using very small needles to stimulate different parts of the body. Acupressure is similar, but involves mild pressure instead of needles. Massage is pretty self-explanatory. Each of these techniques have helped people relax they’re muscles, which is why they can be beneficial if you have dystonia. Just be sure to find licensed and experienced practitioners.
Yoga and Pilates. Pilates is a gentle kind of muscle strengthening exercise. When your muscles are stronger you may be better able to control their movements. Yoga involves both strength training and stretching, and also contributes to relaxation, which can help.
Meditation is an ancient Eastern practice that helps you relax. It’s easy to learn how to do it and it has been shown to promote relaxation, reduce stress and to take attention and focus away from pain and discomfort.
Biofeedback is a technique that involves using electronics to monitor the functions of your body, including muscle contraction. With this technique you can learn to control how your body responds to things like the pain fibromyalgia and the involuntary contractions of dystonia.
Anything that reduces stress. Stress is the enemy of both fibromyalgia and dystonia. It makes your symptoms worse, so anything you can do to reduce it will help.
Having both fibromyalgia and dystonia means that you have a lot to complain about. It’s hard to do, but when you keep a positive attitude and keep trying treatments, you will start to feel better. You’ll have good days, bad days, and frustrating days, but keep going and rely on friends and family for support. With research ongoing, we may not be far from better treatments or even a cure.
Dystonias Fact Sheet http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm