Cervical Dystonia Pain Relief: 5 Things You Probably Didn’t Know

Cervical Dystonia Pain Relief: 5 Things You Probably Didn't Know
Cervical Dystonia Pain Relief:

I wrote about 9 Ways to Ease Your Cervical Pain a few months ago. I thought that I should give out some more tips!

*I am not a doctor. These tips are drawn fom my personal experience, which has been a lot of trial and error*

Neck Support: I saw another instagrammer with this AMAZING bed wedge. I have a recliner, but it does get old sitting in the same place every day. Additionally, buying this Spine Reliever Bed Wedge is much less expensive than buying an entire recliner, if you aren’t ready to make that investment. Some of the Amazon reviews complain that the bed wedge is too soft, but I think it is perfect if you have dystonia. It gives you enough support to sit up comfortably, but is not like a board. If you want a little more support for your head, so you can use a laptop or read a book, simply add another slim pillow behind your head.

Stay Active: Sitting for prolonged periods can be really bad for you! It’s so tempting to sit in the recliner all day, but moving around just a little bit each day will keep you moving for the rest of your life. Losing a little excess weight, strengthening your bones (preventing osteoporosis) and enjoying the fact that you can still move around can boost your mood.

Take Care of Yourself: Self-care is super important. You need to be kind to yourself and show yourself some grace. I struggle with this, myself. Here is a great blog series that you can read about self-care. Maybe even do some research on your own. When you lose your health, you have to grieve. I recently learned about that concept. It has been interesting to think about. Here are a few workbooks and books that I’ve purchased (I haven’t been able to process through all of them yet):
The Grief Recovery Handbook
Managing Chronic Pain: A Cognitive-Behavioral Therapy Approach Workbook
Managing Pain Before It Manages You
Cognitive Therapy for Chronic Pain: A Step-by-Step Guide
The Pain Survival Guide: How to Reclaim Your Life

If you are able to leave the house and fit it into your schedule, don’t be afraid of professional help.

I won’t write anymore about it because I’m not an expert, but plenty of experts have written about Chronic Illness and self care on the internet and in books!

Icing & Heat: I mentioned this before, but I have a few new suggestions! I discovered (thanks to the wonderful Facebook Cervical Dystonia Support Group) this ice pack that I use to cover my entire cervical region! It’s called the Elasto-gel Cervical Collar, which is wonderful. I wish that it would stay colder, longer, but the Velcro on it is almost life changing. I used to have to ask someone to help me place ice packs in the right spot and the quickly lean back and use pillows to keep the ice pack in place. Having Velcro gives me freedom and independence. I’ve also noticed that moist heat helps my pain more than dry heat. Moist heat comes from microwaving heat packs. An excellent example is Neck and Shoulder Wrap.

Medication: It is important to work closely with a pain specialist to explore all of your pharmaceutical and non-pharmaceutical options. If you are already getting Botox from a movement disorders specialist neurologist who uses an EMG, a pain specialist can prescribe medications and give you new ideas! They can also administer trigger point shots, which help me so much! My pain doctor is also full of non-phamercutical ideas to approach pain, too.

from my personal experience, I would caution against is over-using any one medication. Building a tolerance is always a hazard, so I like to use them only when I’ve exhausted all other options, so that I don’t have to go up on my dose. The biggest reason I am cautious is because doctors don’t like to give out higher doses, and then I don’t have to beg for a higher dose, in addition to concerns about building a dependence . But, sometimes pain is very acute and needs to be addressed quickly! You deserve a good quality of life. Combining multiple approaches to pain works the best for me

Along with the medications and working with the pain specialist, remember that you must be your own advocate. Come to the appointment with a list of current medications, which ones are working and which ones aren’t, new symptoms, questions for your doctor, or things that you would like addressed before you leave the appointment. When you’re in pain, it’s so easy to be shuffled into the appointment, mumble some answers, and then accept whatever the doctor tells you – only to get home and realize that you never got to say what you wanted to say. So, when you are feeling well and clear-minded, write down the things that you want addressed during the appointment, not just what is easiest for the doctor. You deserve the best treatment, but you might have to fight for it.

This post contains Amazon affiliate links.

What do you do for pain relief? I would love to hear your experiences because I like to try new things!

You can find more dytonia-related posts here.
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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.

Categories: Cervical Dystonia Tags: ,
But You Don’t Look Sick: An Open Letter (Updated)

So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

You Don't Look Sick: An Open Letter- I originally published my open letter back in October. Since then, I have thought more about how invisible illness affects more people than just me. So, I've rewritten the original post to talk more about how the assumption of what illness looks like has a broad reaching effect in the areas of support (both emotional and financial), treatment with dignity, and access to medical care. Check out my new thoughts on how the phrase "you don't look sick" can hurt someone and generally does a disservice to everyone who suffers from an invisible illness. It is time to reassess what chronic pain and chronic illness looks like in our society, so that people can receive the necessary medical attention. #spoonie #chronicpain #chronicillness #invisibleilness #fibromyalgia #POTS #CFS #depression #ptsd #dystonia #dystoniaawareness #notalone

Hi there,

You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase “you don’t look sick.” You know what, you’ve never seen me at home alone. So, yeah, I don’t look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn’t help my pain. I’m sorry if that messes up your idea of looking sick.

I don’t mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don’t look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn’t even mention the other conditions with which I live), please don’t think you’re complimenting me. If you follow it up with “but you’re so beautiful,” you are implying that being sick should make me ugly. Maybe you think I’m exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won’t.

This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days.

I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn’t entirely from the “active wear” department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don’t see me at home. You don’t see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have.

I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick.

If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don’t look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn’t help you hold your head straight, but I experience life altering pain, just like you.

I also want to take a minute to address a few more problems with the phrase you don’t look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can’t even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don’t tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I’ve had run, and all the extra things that I require to maintain a manageable pain level. I’ll never tell you how many doctor visits that I average a week or how many pills that I’ve tried and had horrible side effects or allergic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with you — yes, I have been turned away by primary care doctors because I’m too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn’t understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade.

When I hold my head straight really quickly, so someone can take a picture, because I’m wearing makeup and plucked my eyebrows for the first time in two months, don’t think that’s my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents’ house.

So, I if you’re a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.



Related Posts:
Rethinking Hospitality (for the Chronically Ill)
Cervical Dystonia
Managing Cervical Dystonia Pain
Invisible Illness

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.

Categories: Cervical Dystonia Tags: , ,
Diagnosis Dystonia: Dealing Injection Pain

*Disclaimer: I am not a medical professional. These tips come from my personal experiences with dystonia injection pain.*
Dystonia Injection Pain: Dealing with Post Injection Site Pain // Cervical Dystonia

Ok, if you’ve decided to get Botox for your dystonia, you probably know what I’m talking about. There is definite pain that comes from the shots. I’ve had three different doctors give me injections. There is always burning after the shots, but depending on the technique of the doctor, I had different amounts of pain after the shots. I’m not talking about pain that comes from waiting for the Botox to kick in or when the Botox is too strong. I’m talking about pain right where the shots go into your body.

I am not a doctor. These are just techniques that I use:

-Ibuprofen for two days before the shots. In order to prevent some of the inflammation from the shots, the ibuprofen helps prevent some of that. If you can’t tolerate taking it orally, there is a prescription cream that is an anti-inflammatory called Voltaren.
If you think about it, getting the shots if fairly traumatic to your body. The needles are long and go into very tight muscles. I know that I feel like I’ve been in a car crash the next day.
-Pain killers. I take a prescription pain killer about 30 minutes before I get my shots. I don’t take enough to make me fall asleep, but I think it helps. If you are new to getting shots, your doctor may still be trying to figure out where to put the shots, so I would ask the doctor about taking anything that could relax your muscles. Since mine go in the same place every time for 3 years, I feel ok about taking it. My doctor only consults a chart from the previous time, even though she uses an EMG machine. She goes so fast that there is no way she can hear it.
-Ice. While heat might seem like a good idea, it will only increase blood flow to the area, which will increase the inflammation.
-Rest and support your neck. If you are experiencing pain, don’t push yourself. If you can sit in a recliner, rather than a regular chair, sit there!
-Listen to your body! If you need to sleep, sleep. If you need pain medication or a muscle relaxer, this is not the time to be stoic.

I hope some of those tips will help you through getting your Botox shots. I know that it’s only 3-4 times a year, but they are very disruptive in my life. It took a few years of shots in order to get my routine in order.

The biggest reason that I wrote this post is because no matter how I worded my search terms, I could not find any tips on dealing with the pain associated with botox injections for dysonia. The Mayo Clinic’s website offers the common side effects like headaches, flu-like symptoms, and swelling and bruising at the injection site, but there are no tips on dealing with those pains! Dystonia injection pain is likely different from the pain you would experience if you were getting the injections for another condition. It took a lot of trial and error to come up with the right combinations of medications and topical treatments for me to be able to withstand the Dystonia injection pain. I had to come up with a strategy with my pain specialist, even though my neurologist gives me the shots. My neurologist didn’t really care. She just referred me to a pain specialist, when I already had one. So, if your neurologist is not sympathetic, please find a good pain management specialist.

Other Diagnosis Dystonia Posts:

Why You Should Consider Botox
Why You Should Join a Support Group
9 Ways to Ease Your Cervical Dystonia Pain

contact me dystonia

Categories: Cervical Dystonia Tags: , ,
Thanks, Everyone!

I just wanted to throw up a quick post today to thank everyone for their kind words on my “shot day.”

Untitled design (7)

I’ve been having “shot day,” now for several years. It never gets any easier, but I was encouraged by all of the comments, texts, emails, and tweets that I received. My friends know that I get my shots and that they hurt, but I’ve never sat down and laid out what the day looks or feels like before.

My life revolves around these shots. I live my life relative to when my last set was and when my next set will be. I even scheduled my wedding so that my neck would be at its best. I’m not kidding about people asking “how much longer until your next set?” when they see me feeling unwell.

Mostly, though, what really helped me on Monday was the extra encouragement. I think that when I’ve asked friends to pray for me, they don’t know much about what they’re praying for. I hope they read Monday’s post because I want people to know what dystonia does to those who are affected. Botox is a wonderful help, but it doesn’t work perfectly and it’s a painful process. It only reduces pain. Nothing can eliminate it.

Again, thank you from the bottom of my heart to every single person who has reached out to me this week.

Categories: Cervical Dystonia, Health Tags: , ,
When Life Doesn’t Feel Right

I woke up the other morning. I woke up, which was pretty amazing because I felt pretty awful.

When Life Doesn't (1)

Once I finally dragged myself out of bed, just long enough to grab a bite to eat, my alpha stim machine, and an audiobook, I slid right back between the covers.

I listened to Sherlock Holmes. I listened to CS Lewis’s The Problem of Pain, hoping to understand more about my problem of pain. I didn’t. Pain is universal, which I already knew. Honestly, the intellectual understanding of suffering does next to nothing to change how my pain receptors, nerves, and body functions. I still felt terrible.

I could feel the depression creeping into my thoughts, as my husband left with his brother to enjoy a day that I had planned for all of us. It’s not his fault. It’s not my fault. I’m not angry anymore. I’m sad. I am so very sad.

At my age, I should have boundless energy. I should be able to live life on my own terms. In fact, I used to stay up all night, get up early, and generally enjoy life. Now I dread going to bed because I hate the time between laying down and falling asleep. I hate waking up because I know that I will hurt. No matter what, I can’t get comfortable.

I can’t make plans in advance anymore. We had purchased tickets to a local minor league baseball game for that day, but I inadvertently bought the tickets for the wrong time–not that I felt like going anyway. My husband and his brother ended up going to a local amusement park without me.

I purchased tickets to see my favorite band several months ago, but when the concert came, I wasn’t able to go. That was the 4th time this year that I missed a concert that I purchased advanced tickets for–and everyone knows that I don’t like to miss a good concert. There are retreats that I want to attend, but with the deadlines looming, I have no idea on August 1 how I’ll fell at the end of October.

Life doesn’t feel quite right anymore. Life hurts. I’ve tried adjusting to the new normal, but it sucks. The new normal is full of pain, anticipated pain, and sometimes new pains that can’t be explained, yet.

Now I sit here, typing, because writing is my only form of therapy that works, emotionally at least. I don’t know if I’ll ever hit publish on this, but if I do, it’s because I want other people to know that they’re not alone. I have no answers. None. The only thing that I’ve figured out is that if I don’t take care of myself it only gets worse. I haven’t figured out how to make anything better–just not to aggravate anything.

I want to pick up my coffee and drink it, but the tremor in my hand, which is making typing painfully slow–yet easier than handwriting–is preventing me. There is nothing more frustrating than not controlling your own body. Millions of people live with movement disorders. My heart hurts when I think about all of the people who can’t pick up their own version of the coffee cup because their brains are telling their bodies to move without their consent.

I don’t know what to do anymore. Life doesn’t bear even the slightest resemblance to anything that I imagined for myself. Yet, there are the unexpected joys that I wouldn’t have, if I wasn’t sick. I wouldn’t be looking at the two sweetest dogs in the world right now. I wouldn’t value my family the way that I do. Also, I may never have met Brian. I feel like a drain on him, but he still smiles at me. He loves me. I don’t know why.

Again, I know that life is not living up to expectations is a part of the human experience, not just for those who are sick. I have perfectly healthy friends who are in unhappy marriages, jobs they hate, or haven’t met the right person yet. They all went to college with ideas of weddings after graduation, white picket fences, and dream jobs. Disappointment, like pain, is universal. I know I have written about hope. Hope that God is making all things new. He makes the broken things beautiful (cue Gungor), but being content with timing is so hard

Categories: life thoughts Tags: , ,
Life, Among Other Things

These have been a really rough past few weeks, especially considering my health. Every night ends in a complete breakdown.

  • If you didn’t read about it yesterday, we’re officially “cord cutters,” which the sales rep did not understand.
  • I started feeling sick two weeks ago, but I thought that I had just overdone it with fun over the weekend, but I really had appendicitis.
  • Life has been really hard because I just can’t seem to catch a break. I’m always behind at work, at home, and I have zero social life; however, some really nice people have come into my life recently. It’s just hard to make friends when you never know how you’re going to feel in an hour, much less later in the week.
  • A bright spot in all of this, has been reaching out to other Cervical Dystonia suffers!
  • I’ve been diligently working on my June reading goals–although they’ve changed a little bit. Still going for a lot of reading, but I swapped a few books out. Can’t wait to review them!
  • Also, I’ve been taking some of my own advice and listening to my favorite music. Before I got married, I had music playing at my house almost non-stop. After I got married, I stopped because I have slightly juvenile taste in music, I think. I don’t know. I decided that I don’t care. Fall Out Boy for life.
  • Confession: I have started doing a few fashion posts because I love clothes. I’m not sure they’re working. They’re fun to do, but it starts to feel a little narcissistic after awhile.
  • Oddly enough, a cover of “Save Your Generation” just came on my iTunes. The lyrics: survival never goes out of style, really struck a cord with me. Sometimes I feel like I am simply in survival mode. There is absolutely no thriving. Yet, other days, I am a smidge above surviving. Either way, as much as I complain about hard it is to have a social life while being chronically ill, I have to acknowledge that my parents have been my rock for years. And a ton of credit goes to Brian for falling in love with a crazy, sick girl, and loving her like mad. When I see the way he still looks at me and loves me, I want to crawl under a rock and die. He’s awesome and taken.


Categories: Cervical Dystonia, life thoughts Tags: , ,
Achieving My Blog Goals

When I started my blog, I wasn’t sure what I was doing. I liked to paint and do crafts, so I thought that I would throw up some tutorials. So, I really didn’t know what I was doing at all, but I did know that I wanted to raise awareness for Cervical Dystonia.

achieving blog goals

Not only have people contacted me to thank me for bringing awareness to something they don’t know about, recently, I received several touching emails from other people who suffer from Cervical Dystonia. Everyone who suffers has their own story of torture and how long it took to be diagnosed. It’s a long, hard road to diagnosis and even longer and harder once you start treatment. It’s a merciless tease when you feel better, grab life with zest again, and then fall back into pain. I’m still learning to live within my own limitations, but it’s hard.

I can’t begin express how grateful I am to connect with other people who want to swap tips for dealing with the pain or navigating life with such a fragile margin for error. One late night night and a little too much excitement can set my neck off with excruciating pain. The stresses of life (both bad stress and “fun” stress, like a vacation) make me sick. I desperately don’t want to let CD destroy my relationships, my job, and everything else that I hold dear.

Since CD is something that I think about almost all day, every day, it does show up on the blog a lot.

If you have a minute, there is a campaign with a deadline of June 26 to make September National Dystonia Awareness Month. Right now, there are not many doctors who specialize in this movement disorder. Furthermore, it can become completely debilitating. While getting disability is always very hard, a lot of people with Dystonia have an exceptionally hard time because people have never heard of it, even though it easily falls under the Americans with Disabilities Act. I am grateful for how far medicine has advanced and some people can control their symptoms with Botox injections and other complimentary therapies; however, it breaks my heart into a million pieces when I read other people’s stories of their own families dismissing their symptoms.

Here is some information about the petition:

Join volunteer Mike Delise in his efforts to promote dystonia awareness by asking the Obama Administration to recognize September as Dystonia Awareness Month.
We have just 30 days to generate 100,000 online signatures. If we meet this threshold, everyone who signs the petition will receive a response from the White House. Signers must be at least 13 years old.
To add your name today through a simple registration process, visit here!
Please share this link and encourage family and friends to add their name. We the people can make a difference!
Several dystonia organizations came together and voted to coordinate awareness efforts by commemorating September as Dystonia Awareness Month beginning in 2014.

The registration process took a minute or two. I guess they want to make sure that you really want to sign it!

Also, if you still aren’t sure what Dystonia is, here is a little bit from the petition’s website:

Dystonia is the third most common movement disorder after essential tremor and Parkinson’s disease, but remains largely unknown to the public. Dystonia is a neurological disorder characterized by involuntary muscle contractions causing abnormal, often repetitive, movements and/or postures.
Symptoms may impede the ability to walk (as in generalized dystonia or limb dystonia), control the posture of the head (as in cervical dystonia), speak (as in spasmodic dysphonia or oromandibular dystonia), see (as in blepharospasm), and/or write (as in hand dystonia). Many patients experience debilitating pain. There are numerous manifestations of dystonia, affecting people of all ages and backgrounds. Individuals are frequently misdiagnosed, which delays access to appropriate medical care.

In Other Blog News (!!!):

I am now accepting sponsors and ad swapping! I love the blog-friends that I’ve made, and I’m hoping to create a greater sense of community! I would love to swap ads and feature you on my blog! Email me or check click here. I would love to do giveaways to promote all of the blogs, but nothing is certain yet. If you are interested in that, too, let me know!


I would love to hear about causes that are near and dear to your heart! If you want to collaborate on bringing awareness to a cause or sharing your story please email me or leave a comment! You don’t have to have a blog to share your story.



Categories: blogging, Cervical Dystonia, Health, life thoughts Tags: , , ,
Invisible Illness

You may have noticed my rant about medical advice the other day. Or maybe you didn’t. Either way, I wanted to address when illness is not always invisible, when it is chronic, and how much courage it takes. I am not writing this because I am brave. I am writing this because I cried on the way to work.

This is not a lifestyle blog about sipping mojitos (who likes those, anyway? Pass the Jack–pre-Cervical Dystonia!) and spending the weekend some place awesome. This is about writing my way through an impossible situation and maybe adding a little levity along the way.

Last week, my Cervical Dystonia was causing me a lot of pain. The only way that I could go to work and concentrate was to wear big lidoderm patches on my the muscles that were tight and pulling. These patches aren’t pretty to begin with. In addition, they don’t stay on well, so I have started using strong tape to hold them in place. I like to wear my hair down to cover it, but I was just feeling so poorly that I couldn’t bring myself to style it. A ponytail was the best I could do, if I wanted to get to work before noon.

invisible illness


I had to place pain relief and quality of life over my vanity. It was on that day, that everyone in my office (thanks fire drill!) that everyone could see my invisible illness. Most of the time, I like to think that it is invisible, but the pain is written all over my face and in the way I walk. My head tilts to the side. My hand tremors. I cry. It’s fairly miserable on a regular basis.

However, if you notice the picture, I can’t help but smile. I’ve been conditioned since I could learn–you always put on a happy face. No matter what. It’s exhausting. It’s probably the worst part of having an “invisible illness.”

invisble Collage

I want other women of all ages to know that they aren’t alone when they have to face the public looking disheveled because they’re sick. They aren’t alone when they have physical signs of a much deeper condition. It’s hard, but my dad told me that those patches were my badge of courage. It’s been hard for me to work while I’m so sick. Pushing through the pain to sit in a desk all day is so taxing on me–physically and emotionally. But I have to believe that I’m not alone. I’ve found an amazing online support group and am eagerly anticipating the national conference in September.

Categories: Cervical Dystonia, Health Tags:
Thanks, Non-Doctor

So, not to sound bitter, but I saw this wonderful picture in a Cervical Dystonia forum the other day, and I felt like it totally encapsulated everything that I feel:




To paraphrase a few other people who also have cervical dystonia, there is really nothing more annoying than unsolicited medical advice. I have a friend who has a similar medical condition to mine, so we share tips. But, that’s a special relationship.

Even if I was perfectly healthy, I would never see a chiropractor. I went one time and started screaming when he tried to chiropract-er on me after acupuncture. The acupuncture didn’t work, either.

Perfectly nice people inquire about my condition and I try to put it in the simplest terms possible:

My brain tells my muscles to squeeze, and my brain never stops. If I didn’t get Botox to weaken the muscles, my head would be stuck like <insert head tilt>.

So, no, I don’t want to try the herb that your sister’s brother-in-law’s mother used for her totally unrelated condition. In fact, at any one time, I am juggling 5 different strong prescription medications, so that’s a freaking terrible idea. When I normally know more about my condition than any doctor but my neurologist, you can’t tell me thing I don’t know.


/end rant

Categories: Cervical Dystonia, Health 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?

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Categories: Cervical Dystonia, Health Tags: ,