Severe Pain with Tics?

Kerry - posted on 05/08/2013

Hi
I'm from perth Western Australia my daughter has had multiple tics now for 5yrs she is almost 12 she is an amazing musician,and plays piano and writes songs and sings like an angel and in last few weeks has developed a new tick of wrist twisting it is really affecting her favorite things which is school,piano. She also does neck,hands,jaw cough and OCD and she is getting very depressed i dont no wat to do she crys in pain and all i can say is its so unfair,but theres nothin they can do my daughter wants to be a torrettes specialist coz she thinks all the docs here are useless.i definitely won't argue that quote
Kerry

Eleni - posted on 12/09/2012

My son is suffering from pain as well. The constant twitching has worn down his neck and he is in extreme pain from the tics. You are not alone.

Jennifer - posted on 11/09/2012

My son is 8 and has Tourettes. He turned a door knob to go into our bathroom and fell to the floor. I took him to the er and he had broke his first rib. The doctor said had never seen anything like this in 26 years. I look at him and he said the only way you could break your first rib is if you where shot with something. When he turned the door knob two muscles must have contracted and snaped his rib. So if doctor tell you it doesn't hurt get a new doctor.

Jen

Tony - posted on 10/17/2012

I'm 55. Had Turrettes all my life. His pain is very very real. Try doing chrunches non-stop for days, it hurts. The good news is he'll have great abs. Also, I've personally found that tics & ocd are a nerosis that does not care about self preservation, but will respond eventually to negative stimulous. I once stepped over the side of the bathtube for over 30 minutes. I laughed, and cried from the stupidity of my situation & the pain which burned & cramped till I just pulled up enough concentration to let myself fall to the floor. End of repitition, I win! :> The bad news is I now his serious cardiac, neurolgical, skelital, & digestive problems. Unrestricted movements hurt to tell you your straining or damaging something. I have used Lorazapam as necessary for 30 years to control servere movements but the best medicine is a mothers love. Sounds like he has that.

Tony - posted on 10/16/2012

I'm a 55 year old male in Canada. I've been forced to deal with Turrettes all of my adult life. Tell your neurologist to repeat any action he wish for minutes, let alone hours, violently or otherwise, for weeks or years on end and see if it results in pain. Unrestrained movement causes pain, nerve damage, wears out joints, can effect vision, balance, dental health, and cause spinal & digestive issues. I know this personally. It doesn't take a brain surgeon to figure that that out; just common sense & a little empathy. Still, your son will survive & even excel in spite of his pain as he learns to mold his ocd to his own more acceptable forms. It is true that he will likely develop ever more chronic pain which will shape his life. You can't change that. Many Turrettes sufferers become strong, creative savants drawing strength from their pain & a daily battle within their own mind. I can only speak for myself, Turrettes is as soft syndrome, not a hard disorder like epilepsy, but sometimes my pain & difficulties seem harder for others than for myself. When my shoulder pops out repeatedly I never swear lest my ocd should pick it up. I count or change the rules over time, or lrt myself fall to the ground to break the pattern (tough love, but beat punching my head like before). When I bounce repeatedly on my degenerative back I get mad but laugh at the pain till my heart, after 3 attacks, or my digestive system which, after years of wrenching to my chest has lead to chronic divereticolosis, prosititus, gout, and stomach ulcers breaks the laughter with a few tears. But I am not unhappy. I am a survivor, a graduate Computer Scientist, Analyst, Electronics & Robotics Engineer, a Physicist, a Song writer & Guitarist; the father of 3 children. Your sons pain is real. It will drive him, and shape him in ways others, even you, can never begin to understand. It is by no means a gift. I would not wish it on anyone, but it can be whatever you let him make it. It's fight with himself he can never win; never accept, never tire of, or give in to; that's the real pain. I don't mean to sound sanctimonius. Just want you to know from a guy in the other end of the wheel he'll be ok. He just needs your hugs & encouragement.

Sara - posted on 09/21/2012

I know this is a long time after the post but. I would suggest looking into doterra oils. The Deep Blue oil or rub is great for pain, plus the are no side affects and it's natural. I have used it on myself and my children the youngest being 18 months. If you would like to look into them go to www.mydoterra.com/sararenkert

Dana - posted on 09/17/2012

Tonia Sorry it has taken me so long to respond. I have not been able to login to this site. anyways. I actually live in Carterville MO which is only 5 mins from Joplin MO. Thank you for the idea about the chiropractor. I thought about that a few months ago but didn't know if it would work or help. I use to see one every week actual 2-3 times a week. And it helped me a whole bunch so Im definitely gonna take him. Thanks again. :-)

Tonia - posted on 09/14/2012

Hi Dana,

I am a little late, but just saw this post.

I think you should bring your son to a chiropractor. Your bringing him to a neurologist now, right? Neurologist deals with nerves and nerves all come from the spine. A chiro will help him i know it. Doctors never recommend chiropractors because they want to pump us with meds and all sorts of other tests. A chiropractor saved my son from pain all over his body. He'd miss school from knees that hurt so bad he could not walk. He'd have pain in his arms, legs, fingers...He'd have pain in his testicles for crying out loud! No doctor or neurologist could tell me what was wrong. He had xrays, mri's, sonograms...all inconclusive. Started going to a chiropractor and we started to see a difference. Within a year and half, there is no more pain. Please give it a thought.....oh my gosh, i just realized you are in wallkill! Me too. I think i saw that somewhere in this post. I took my son to Dr. Robert Walentin in Cornwall. He's awesome.

Tonia

Dana - posted on 07/27/2012

I think that, at least for my son, it's not the acual tic that causes the pain. It's the repetitiveness that is leading to the pain. For instance, my son would bend his ankle to the side as if he was stepping on the ankle, it wasn't the actual bending of the ankle that caused the pain, but the pain developed because of the repeating action. So, in a way I can understand why the doctors say that tics don't cause pain. Does that make any sense?

LISA - posted on 07/17/2012

Hi I am writing from Australia. There is some understanding by neurologists here for very mild Tourettes. My son is 12 and has severe motor and vocal tics. My 14 year old daughter has life limiting OCD but only a few motor and vocal tics. I am sorry to hear the knowledge on pain relief for severe tics in the US appears limited. We were hoping there would be as Australia is light years behind the rest of the world in numerous fields. The head of neurology at our largest childrens hospital said that tics do not cause pain.I told him differently but he 'assured' me this was not the case. What hope is there?. This person is teaching other doctors. My son is generally very stoic with his tics but for the past few weeks his tics have had him in agony. Shoulder, stomach, bowel, bladder, breathing, neck etc. Our local doctor has, in his own words, very limited knowledge on TS but is very open and accommodating to being advised our personal experiences with TS. He has given my son two very strong script pain killers - these have done absolutely nothing. He suggested my son be admitted to our Childrens Hospital for some pain relief there. He has had to write a letter to the hospital to ask them to please take seriously the pain my son is in. From previous experience at this hospital most staff don't know how to spell TS let alone have any knowledge on the Syndrome - it is so frustrating and makes me furious that there is such ignorance towards TS. As you say, ask them to do just one tic for an hour or so and then they might ;get; it just a tiny bit. My heart just breaks when my son is in my arms, with internal and external agonising tics, and there is nothing I can do. I am gutted watching him,hearing him cry in pain. I know there's no cure but how can there not be something, anything for pain relief for these innocent, brave children?We feel very isolated here as Tourette's is rare here and I am so glad to have found Circle of Moms. Lisa, Australia

Mark - posted on 06/26/2012

Hello, i feel for your son. I am 48 and have tourettes. i hit myself so hard in the head i actually feel dizzy as if i will pass out. there are good days and bad days. I still drive and actually i ride a motor cycle because its relaxing and i am motionless when riding. i also do bird houses and stuff whenever i work with my hands i am usually good. maybe try some model building of cars or something to keep the hands busy. myself i get very stressed out going out to new places. i dont like to meet people and actually i have had panic attacks going into places. i hope your sons tics wither away for him. i could just imagine how he feels especially around other kids. hope it all works out for you

Elizabeth - posted on 03/26/2012

My neurologist told me years ago that there is no pain but me personally I get pain from my tics all the time. Especially if I'm stressed or anything and my tics are out of control

Doreen - posted on 08/09/2010

Dana that stress ball is a great idea. Gonna get one for my son...

I have family that lives in Peeskill and surrounding areas

Dana - posted on 08/04/2010

Dana B, The stress ball thing is a GREAT idea. I think I will get one for Andrew to use at school or when we are in-town . He suppresses he tics when he is around others that at night time or in the car they are Horrible. I think that will help a little for the larger tics. Thanks for the idea.

Dana - posted on 08/01/2010

Cynthia, You're right in telling your relatives that your son can't stop his tics. Even if he suppresses them momentarily it would probably be worse when he did finally release it. That's how it is with my son who was diagnosed 4 years ago. My son does have a stress ball that he squeezes sometimes, but that's mostly for his anxiety. It may work for your son though. I do know that when my son is focused on something he has less tics.

Dana - posted on 08/01/2010

Doreen, Yes I do live in Upstate NY. We're in Wallkill.

Cynthia - posted on 07/29/2010

Micah has started a tic lately where he rolls his shoulderblades, and sometimes his wrists and ankles. They make a "clicking" noise, which in the beginning really grossed me out! I can't even try to imitate him, he must be double jointed or something. He does sometimes complain that it hurts him, especially when he's trying to fall asleep at night.
He isn't diagnosed yet, but my husband and my mom try to get him to stop doing it because he's hurting himself. He doesn't complain of any pain, but my family is worried that he's going to do damage. I tell them that there's no way we can stop it, and in fact, if we pay attention to it it will probably make him do it more. They just don't get it! I think when we finally have a diagnosis, and the NEUROLOGIST tells us not to worry, they will finally stop!

Doreen - posted on 07/27/2010

My son has a constant tic where when he walks he drags his toes. Then he will walk on the side of his foot with his ankle bent. And when it is really bad he will stand or sit and tug at his foot and leg and bend the foot. I am like you Dana and do every tic that my son has to see what he feels.

Doreen - posted on 07/27/2010

Dana do you live in NY? My brother has the same area code and lives in upstate NY. I am in CT

Dana - posted on 07/27/2010

Dana-I like your name by the way...lol! Your welcome, that's what this group is all about-we all could use a little support and understanding through this! If you ever need to talk feel free to call me 845-728-0526 I'm usually always home. Take care!

Dana - posted on 07/26/2010

My son Andrew has 2 new tics, the 1st is the is pulling his sides so that his bottom rib bone and hip bone touch and he does this on both sides, all day long he only has a relief period of maybe an hour that is only in 5 -10 min between episode. the 2nd is the throws his arms out so hard that his shoulder elbow pop then he twist his wrist so that is pos 5 times in a row. he does that tic less than the other. The 1st tic he is prob. the worse so far cause he is doing it at times while he is sleeping. Dana, I believe you are so right on the empathy training. I actually told the nurse at the ER that I felt the dr need to go do the exercise that is similiar to the 1st tic for at least 15 -20 mins and he would feel horrible & be in pain. I know this because I actually do (mimic) ever tic that he has. So I know how he feels. I jsut want to say thank you very much Doreen and Dana, for your replies. I live in small town and there is no one else around that has a child with TS . It means alot to have some other moms to talk to. THANKS Again.

Dana - posted on 07/26/2010

My son also has had pain caused by tics. He had a certain hard head bobbing tic that caused him headaches everyday. I gave him tylenol and he would lie down, but until that tic went away the only relief was when he slept. He also had a stomach tic where he would tighten and release his stomach muscles. That one made him sore also. It seems awfully ignorant of a doctor to say that tics don't cause pain. I think some doctors need a lesson in empathy! Any repetitive movement is going to cause discomfort or pain eventually...examples being carpel tunnel and tmj.

Doreen - posted on 07/23/2010

Dana-my son is nine and has a head shaking tic that hurts his neck tremendously. Even on the meds he complains his neck hurts all the time. One time he was shaking his head so bad I thought I would have to bring him to the er (it was late at night). I brought him to the pedi the next day and they fluffed it off like it was nothing. I know his neck bothers him a lot. Some tics have to hurt. Imagine doing a specific tic to your body continually I bet our bones and muscles would hurt too.

I feel for you and know what you are going through. Hang in there