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Step 1
How do you know if you have CD? There are a lot of things that can cause a temporary stiff neck so you shouldn't run to the doctor just because you have a crick for a couple of days. CD is long term problem. I had a constantly stiff neck and violent muscle contractions for over a year before I visited a neurologist for the first time.
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Step 2
Getting CD properly diagnosed can be the biggest hurdle. You have to accept that something might be wrong and then try to find a doctor who is willing to listen and help. I have found that many general practitioners don't even know what CD is without looking it up. It's not their fault - they simply can't know everything and CD isn't that common. If you think you might have CD, talk to your family doctor - they should at least take you seriously enough to look into it. If there's any question, they should refer you to a neurologist rather than trying to treat it themselves. If you are not satisfied, you may have to find your own neurologist - that's what I had to do. When I was going to my family doctor (who was in every other way a fantastic general practitioner) trying to figure out what was wrong, I had never heard of CD and, unfortunately, neither had he. So, it was impossible to be diagnosed. He actually sent me to a chiropractor, which it turns out is the absolute worst possible thing you could do for CD. Even the chiropractor didn't recognize what the problem was. I could have been seriously injured or even killed. So, if you think you might have CD, say so - don't assume doctors will recognize it.
Worse yet, in the not so distant past, CD was considered to be psychological disorder, not a real physical disorder. If a doctor tries to tell you it's psychological they're either a quack or they simply don't care. CD can have secondary emotional consequences for sure, but it is a very real and very physical disorder.
No matter what, don't give up. There are treatment options that can vastly improve your quality of life so going through the process of finding a good neurologist is well worth it. When my CD was at its worst, I couldn't even write my own name because I was so twisted and wracked by muscle spasms. I have been receiving treatment for several years now and the difference is remarkable...some days I almost forget that I have CD. -
Step 3
Keep yourself educated. There are several very good websites dedicated to movement disorders, or dystonias. In addition to being familiar with the physical aspects of the disorder, I like to stay informed about the latest treatment options, research, etc. I feel like it makes it easier for my neurologist and I to work together to figure out the best treatment options.
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Step 4
Although it can be difficult - don't isolate yourself from the world. For instance, I have a tendency to want to avoid fancy restaurants because I have difficulty getting food into my mouth sometimes and worry that I'll have to eat like a slob and everyone will notice. Soup is the worst. However I have come to realize that it's much worse in my mind than it actually looks. Most people really don't notice or care...and so what if they do! I've haven't been thrown out of a restaurant yet!
You can also learn tricks and methods for dealing with common situations. Think about and practice what you will do in these scenarios. It's just a matter of figuring out what works for you and what is important to you. For instance, when I have to sit at a table with other people, I strategically place myself so that I won't have to strain to look at them. You can also take a proactive position and try to educate others about your disorder. Sometimes people will shy away from people with physical disabilities because they aren't sure how to act. Simply explaining your situation can relieve a lot of tension. Being open about your condition can also help you deal with misconceptions and questions. Sometimes people will ask you what is wrong. I often get asked if I have been in a car accident (whiplash is what their assuming I think). I also get accused of looking nervous or shy. Rather than getting offended, I use it as an opportunity to educate about CD.
In the end, the best thing you can do for yourself is to accept things the way they are. Be yourself, change the things you can, and accept the things you cannot change. You may have CD, but you DO NOT have to be CD. -
Step 5
Seek supplementary methods to help you feel better between treatments. For instance, massage therapy can be very helpful for some CD sufferers. It won't cure the condition, but it can give you some temporary relief. I have found that massage also helps a lot to relax muscles that get tensed up as a secondary side effect of the CD (back, etc.). Other ideas are soaking in a hot tub, yoga, self massage and very gentle stretching. NEVER do anything to your neck that is forceful or painful.
