Cervical Dystonia and Depression: Lessons From Search Terms

*I am not a doctor. This post is based on personal experience.*

Cervical Dystonia and Depression: It's Ok to Get Help

Since I started blogging, I have consistently written about my personal experiences with Cervical Dystonia. As I’ve accumulated more information on my site, I’ve noticed a huge increase in search term hits. I am happy that my blog has allowed me to connect with so many Cervical Dystonia patients because we have been able to share our tips on dealing with the physical and emotional pain caused by Cervical Dystonia. Also, I’ve been able to encourage newly diagnosed patients and share helpful resources with them.

Some of the most common search terms (that I can see) are:
cervical dystonia
cervical dystonia dry needling
why does ice help cervical dystonia
ways to ease pain from cervical dystonia

However, I am writing this post because this morning, I noticed the search term (twice):
if you have cervical dystonia if you want to fall down some stairs would it break your neck

If you searched that term, please contact your healthcare provider or call 911 immediately.

For anyone else who is searching dystonia and feels despair, tell someone. It’s ok to talk about it and get professional help. The diagnosis can be a relief, if you’ve been searching for answers, but it can understandably cause depression. You have a painful condition that is coming in and WRECKING your life. I can’t say that it will ever be the same again, but it can still be a good life.

I’ve been there. I’ve not wanted to live with the pain from dystonia anymore. It does feel like the pain won’t end. Sometimes it take a long time to get your Botox injections scheduled, placed in the right spots, and at the appropriate dosage. It takes time to figure out what other therapies will work for you, like ice, heat, massage, or another oral and topical medications.

Pain management is an art, not a science. Every person needs to work with a doctor to try their own plan. There are tons of resources on the internet about ideas of things to try, but everyone reacts differently to medicines and complimentary therapies. It will take time, but pain can be managed over time. There is no quick-fix, but I encourage everyone to explore all of their options with an experienced doctor. I have a pain management specialist who will refer me to other practitioners (like physical therapy), if that’s what I need, but she oversees all of it. She’s the one who will prescribe lidocaine patches, if I want to try those because I don’t want to take anymore pills, when the pills drain the life out of me.

If your pain is not being managed well, you may need a new doctor. Maybe you’ve been in pain for years and years, but you only get pain killers and you’ve hit the limit of what you can take. That happens! The pain killers could only be masking the fact that your are not properly diagnosed and receiving adequate care for your dystonia in the first place.

While you are waiting on the pain to be managed, you can go through a ton of emotional turmoil. In fact, even after you’ve “managed” your pain, to use the term loosely, you can still have anger, frustration, and depression that stems from all of the pain you endured. Cervical Dystonia can touch every part of your life. So, please, know that you are not alone, it can get better, and it takes time.

Additional Information: Here is a great article that I found that explains the connection between depression and pain!

Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.

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Categories: Cervical Dystonia Tags: , ,
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: ,