9 Ways to Ease Your Cervical Dystonia Pain

If you’re anything like me, your cervical dystonia pain doesn’t just hurt your dystonic muscles. I get all sorts of headaches, fatigue, and sleepless nights.

Updated on 1/9/2016 after consulting with my Neurologist and Pain Medicine and Rehabilitation doctor.

Disclaimer: I am not a doctor. I am a patient with Cervical Dystonia who share her experiences. What works for me may not work for you, but I am sharing what I have found through trial and error.

Cervical (4)

Aside from seeing my doctor for preventative migraine medications and regular Botox shots, I like to use the following:

  • Lidoderm patches
    I had to push and push my doctors to give me these, but I can’t believe that I didn’t get them sooner. Not only do they numb the dystonic muscles, but they’re helpful with the migraines, too.
  • Special Compound Cream
    This compound from my doctor acts as an anti-inflammatory, local anesthetic, and nerve pain number.
  • Trigger point shots
    My doctor doesn’t usually put a steroid in the shot, just a local anesthetic. The shots go into the muscle knots that are caused I think are caused by pain from my Botox injections. However, I’m not entirely sure what causes these knots.
  • Heat
    Heat is also helpful for my dystonia I prefer to use ice with the headaches, but a nice heating pad at my desk can make a world of difference if the dystonic muscles are pulling.
  • Reclining
    I have a great recliner at home. When my neck is feeling tired, it keeps me from being bed-ridden. At work, I have a high backed chair. I added a car neck pillow. It really helps when I need to lean back and rest my neck.
    If you aren’t ready to invest in a recliner, another friend of mine with dystonia showed me a picture of her Bed Wedge. I never travel without mine, unless I am flying. It’s gone up about $20 since I purchased mine a year ago, at the time of re-writing. However, when I only had my recliner, my husband and I joked about how much we wanted a double recliner so we could sit beside each other and watch TV. This lets us sit next to each other in bed and do that.
  • Controlling Anxiety
    Sometimes I have to say no to obligations. I really wanted to join Junior League last fall, but I couldn’t spend that many hours on my feet, volunteering in the wearhouse. Even when they offered me a spot on the blog committee instead, I just had to say no. The travel and scheduling was just causing my anxiety to go off the charts. And that’s just one example. I just have to keep my schedule clear because I become more anxious when I cancel on people.
  • Accept Help
    I like to do everything myself. I also am very goal-driven. So, when something stands between goal and me my anxiety goes crazy. And, I want to do it all by myself. Instead, now I have to let my husband help with the cooking, my parents help me organize all of my stuff, and realize that I can’t run the way that I used to or taking as many group exercise classes that I want. Now, I slow down and accept help. It’s the only way to prevent pain!
  • Take a Walk
    If you are able, try taking a 10 minute walk. I find that getting my blood flowing helps. My doctor has recommended Australian Dream, to help bring blood to the area, but I haven’t gotten around to trying it yet.
  • Massage Table
    I know this sounds weird, but stay with me. I have one that slides under my mattress, so I can put my face in it. It allows me to take some stress off of my back. I have this one, but they make a few different ones.
  • Kineseo Taping
    This one is harder because you need a trained professional to show you the right way for your body to have it applied. I attended the ST Dystonia conference in 2015 and a physical therapist gave a presentation about it. After her presentation, she taped my neck and my husband took a video, so he can now do it for me. Each person has a different taping pattern, depending on where their pain is and how they move.

I’ve tried a few things that haven’t helped me, but other people might find them helpful:

  • TENS Unit
  • Massage Therapy
  • Acupuncture
  • Dry Needling

I edited this post because both my neurologist and pain management doctors separately talked to me about the dangers of using ice for my pain. It gave me a lot of relief, plus I was sick of heat (who isn’t after a few years?) but apparently it does something bad to your muscles. So, talk to your doctor if you have concerns. Apparently there was new research out.  

What do you do for your dystonia symptoms? For your migraine symptoms?

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Note: If you have any questions about Cervical Dystonia, want to discuss it with another patient, or want someone to help you find the right resources regarding dystonia, please feel free to email me at the email address on the sidebar. I will respond to as soon as physically possible. If you want to leave a comment to let me know that you’ve emailed me, that is helpful, in case it gets caught in my junk folder. Please don’t let the public commenting system prevent you from contacting me.

Categories: Cervical Dystonia, Health | Tags: , |
  • Jen

    Thank goodness that you have been able to find some things to help with the pain! What the heck is dry needling though??

    • Dry needling is what is sounds like. Instead of getting a local anesthetic shot into the muscle knots, some people get relief from a needle just being put in the middle of the muscle knot. I’ve never had it done to my dystonic muscles, but I did have it done to my lower back. It was not for me!

  • Hi Sarah…Great to find your blog. I have CD too and blog some about it.

    • That’s awesome! I love connecting with other people with CD! I’ll have to read your blog 🙂

  • Ruth Burton

    I have cervical dystonia and take propanol and use essential oils successfully. Peppermint and Basil on my wrist, doterra. Massage really helps and the therapist showed me a coupla stretches that helps. I also find that I am cslmer after eating relaxing food such as soup.

    • I like peppermint oil for the tension headaches that come from my CD! I get the relief of an ice pack without the weight of one on my head.

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  • Julie Hahn

    Sarah, I too have Cervical Dystonia. Diagnosed April 2014. I use many of the technics you recommend here. I also use Kinesio tape. The physical therapist applies it every week. It’s like a continuous sensory trick and calms my nerves. She showed my husband how to apply it as well, so when I can’t do PT then he can apply it for me. So at this point, botox, drying needling (LOVE it!) and taping are my main tools. I also have a wonderful moist heating pad that looks a bit like a cape. I always do the heating pad the day I get dry needling. Fantastic. I am, however, completely exhausted. That’s the hardest part. I was recently started on a carbidopa/levodopa to see if I have Dopa responsive dystonia. I kind of hope I don’t because the medication is so darn powerful and is sure to have damaging side effects. I’m very pro-active with my health. I also have Celiac Disease (no gluten) and another movement disorder that was caused by gluten: Gluten Ataxia. As a result, I eat a anti-inflammatory diet. Clean whole foods, nothing processed and organic. I believe it’s helped me a lot. and yet the new diagnosis of dystonia is very discouraging to me.

  • Well, my doctor and I were talking about that when I wrote my post (I guess I forgot to come back and edit. I wrote this post right when I first started blogging!!!. I ended up going with lidocaine ointment to compliment the patches (like get up near my hairline). It’s not perfect, but it doesn’t affect my cognition. However, I rarely use it now that I don’t work. It was really just to get me to be able to drive to work so I wouldn’t use sick leave.
    I recently heard about someone who gets a special compounded cream that has a topical muscle relaxer in it (I didn’t get a chance to ask what the relaxer was or if he responds to oral muscle relaxers because things like Flexeril, Tizanidine, etc., don’t do anything for me, so topical sounded interesting, especially if oral muscle relaxers don’t work, but the topical one does!). I’m about to head to the doctor and am going to ask her about one.

  • You would need to be diagnosed by a movement disorder specialist (neurologist). If you make an appointment, make sure to ask to have an exam done by the person who specializes in dystonia because a lot of movement disorder specialists actually specialize in Parkinson’s or other disorders. The doctor who was treating my Tourette’s (a yearly check up) happened to specialize in dystonia and even be conducting research. I was being seen at a teaching hospital at the time. I don’t live near one now, but there is a large neurological group in my city that does treat it, so I would guess they diagnose it.
    As far as a referral goes, I guess you could take some information from the dystonia medical research fund’s website to your primary for a referral? I am not sure how that would work. Most doctors that I know are only vaguely familiar with it.

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  • I hate hearing that you were misdiagnosed for years! My does not tremor, but I have friends who do. They sometimes have sensory tricks that stop it (like wearing a hat or putting their hand on their neck). One friend wears a hoodie. When it gets really bad, people with a head tremor sometimes check to see if they are candidates for DBS.
    I do have a hand tremor, though.
    My email is on the sidebar, or I still check the old email attached to my blog’s URL, sarah@seriouslysarah.net, sometimes. Feel free to reach out!