Tourette’s is a pain. Literally.

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As always, I would like to thank everyone who has continued to support this blog and this cause. You are the vessels of awareness that the TS community so desperately needs.

This week’s topic is as the title alludes to. PAIN.

I have said it before, I’ll say it again, and probably 100 more times: Tourette’s is more than tics. It is more than what people see on the surface, and sometimes, even more than what they may observe about your comorbidities.

Sometimes Tourette’s is straight up painful.

Physical tics can cause fatigue and even wear and tear on certain muscles, and even lead to injury in some cases. Vocal tics can put a strain on the vocal cords and cause sore throats or voice loss.

Imagine you go and work out and after doing something such as squats repeatedly; your muscles are sore the next day. You’d probably skip squats the next day, right? With TS, you don’t get a say in when you stop these proverbial ‘squats’ and this can lead to more soreness and eventual injury.

What made me bring up this little nugget of truth is that recently, my neck tic has really started to cause me a lot of issues. I am getting headaches that range from the back of my neck where it meets my skull, and up around my temple. Sometimes they last for days with very little response to OTC pain killers, and it took me a while to connect the two events. At first, I’d get one maybe once a month and then they’d disappear for a long while. Now, I’m getting them multiple times a month and the duration and stress they are causing has reached a level that I am going to bring them up to my doctor this week.

Part of me wanted to do this blog for the usual reason, which is to spread awareness. The other part, admittedly, wants to see if anyone else reading has brought up a tic related injury or concern to a doctor, and if they were able to give them any decent referrals? Is there something I should be looking for in response to this? I’m nervous about it, despite the fact that my GP is very personable and has never brushed aside a single issue I’ve brought up.

This is Tourette’s, my friends. It’s a cycle of tic, react, stress, adjust, rinse and repeat.  I wanted to let you in on that as I feel it, again, is real. It’s the personal side of the disorder that need’s to be brought to the world’s attention just as much as the definition of the disorder itself.

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18 thoughts on “Tourette’s is a pain. Literally.

  1. My understanding of CBIT (cognitive behavioral intervention for tics) is that you can train yourself to substitute in a less noticeable tic (or I think in your case, a less painful tic). Mine come and go, and the only ones that do any physical damage are chewing on the side of my pinky (huge, rough callous) and scraping my teeth together. The pinky one went away recently, and stayed away long enough for the callous to disappear. But about a week ago, it started up again and the callous is coming back. The closest CBIT practitioner is a couple of hours away, and currently my tics are about as unobtrusive as they could ever be, so I can’t and won’t be practicing what I preach.

    Liked by 1 person

    1. I’ve been trying this tactic on my own to no avail. I do plan to ask a neurologist about it as it seems to be a very popular treatment.

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      1. I also have neck jerking that causes pain, tingling sensation that progressed to weakness of right side arm and leg. After having MRI. Doctors said i needed to be operation to decompress my cervical spine. But i didnt because of post operation. Its impossible not to move my neck. Ive read of horror stories with people who pursued cervical spine operation. If ever you have any new inputs on these cases from other comments. Pleaee do email me. Maybe there are better ways to do it rather than waiting for my body to be paralized.

        Thank you so much for your blogs. This will help a lot of people.

        Liked by 1 person

      2. Thank you for your input! I’m absolutely going to avoid surgery at all costs. Luckily i don’t think the damage is serious enough. It is something i want to nip in the bud though. I’ll update eveyone once i see a neurologist 🙂

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  2. My son had a lot of neck pain from one of his tics. We have a great muscular therapist in our town, and he was able to help ease some of the pain.

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  3. My daughter’s neurologist referred us to a therapist and when my daughter had a stomach clenching tic that was causing her a lot of pain she tried CBIT and it greatly helped. I would suggest a therapist that is knowledgeable about TS and CBIT. My daughter also has neck tics that cause headaches and her therapist said she can try coming up with her own counter movement (ex: moving her head down with chin towards chest slowly when she feels the urge to do the tic). It sounds overly simplistic but helped so much with the stomach that we’re going to try with the neck tic too. Hope you find some relief.

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  4. My daughter has given herself whiplash in neck in past & was recently was told by duty doctor that the pain in her shoulder was from bad posture which I disbelieved as she still has neck tics & suspected it from that .
    I paid to see chiropractor & she agreed with me.
    Managed to ease it slightly & have now seen own GP & got referal to physio & she takes clondine which have helped reduce the ticks a bit

    Liked by 1 person

    1. Sorry to hear she has had a tough go of it. I’ve also debated discussing medication to try and minimize my tics

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      1. Hey if you’re interested in a few medications and out of box views and tactics , please feel free to email me !
        Not sure where about a you reside , but the outreach of helping hands goes far
        lukielocal@yahoo.ca

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  5. Thank you for this article. It actually was something that I was looking for to refer to I a research paper I recently did for school. Currently I am in school for massage therapy and will be involved in a research study in the fall on just this issue – to see if massage therapy can help to reduce pain due to muscle overuse from chronic tic(s) I order to improve quality of life.

    Liked by 1 person

  6. My son had the same tic in his neck muscles. He had a neurologist who can inject Botox which stops the muscle from ticking. It was amazing u just tell them which muscle is contracting and they injected it on his shoulders too. Insurance will not cover it as of yet but she is trying to with a trial and approval from FDA.

    Liked by 1 person

    1. Ive heard about this option from a few others! Hopefully they’ll be able to pinpoint the exact muscles! Thank you for your feedback!

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  7. My son, now 18, has always had bad neck tics. Just like you, no OTC meds helped sooth. it even got to a point that no muscle relaxer did much. I took him to my chiropractor, they are very thorough. I explained TS and the whole movement issues and so on. She totally got it. When they got to working on his back with deep tissue massaging, wow, was he knotted up, from his lower back to his upper neck. They also readjusted his neck and back to realign him. He said it was helpful. His headaches did decrease as well as his muscle pain and stress. But he’s 18 and never makes time to keep a regular schedule to go back. It would take months to get things smoothed out, of course, just to get knotted right back up. This was the only thing I could think of quickly as he was in so much pain. Thank for sharing.

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  8. I recently read James Pattersons novel Against Medical Advice.It deals with the life of a child thru to teens and his journey with Tourettes it is a very compelling read about all the drugs and trials and Drs they dealt with . Then his addictions and eventual rehab and coping mecanisiams. I myself have 2 adult children that suffer from this syndrome my oldest is afflicted by it more so than my youngest. It is a struggle that most people figure is like Duece Bigalow and thst it’s funny. But it truly isn’t.

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