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Tightness and pain in chest
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Hi All,

I've had dystonia for 15 years now. It started in my right hand, then spread to my neck and shoulders. I now have it in my left hand also and my legs and feet. Also for several years I've gotten a tightness and pain in my chest that makes it painful to breathe. I've had my heart checked and everything has come out okay.

I also have multiple sclerosis and my doctor said maybe it was MS Hug, but doesn't think it quite fits the pattern plus I don't have any lesions on my thoracic spine. So I'm wondering if the dystonia is also affecting my chest muscles?

Anyone else have this? Thank you for your help.

My neurologist is sending me for a full MRI today because I'm also having difficulty walking that hit about the same time as this along with increased fatigued so I may be having a relapse, but often my dystonia gets worse when I have an MS relapse.
Posted on 08/10/11, 10:55 am
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Reply #1 - 08/25/11  1:08pm
" Neener, I do not have anything like what you have. I just have pulling of my neck and perepheral neuropathy of extremities.
I hope the doctor gets you some answers with the MRI.
God Bless "
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Reply #2 - 08/25/11  3:50pm
" Hello Neener,
You'll confirm this with your doctor of course; Chest pain that can be changed or attenuated or modified by such things as changing your position, or pressing on it. etc. anything you can do to change it is not characteristic of cardiac related chest pain. Though cardiac distress isn't restricted to only chest pain, when it is, it can be mild, heavy or crushing, and there's nothing you can do to relieve it such as getting into a new position, taking a breath or rubbing it etc.. A stable angina my present chest pain and shortness of breath upon exertion. If you stop the exertion and sit down the pain can lift on it's own, but notice this is modification to activity, not your position.

In addition to the hands and arms and voice degradation I have a dystonia-like pain that comes between my ribs. It starts as a small point and it grows in intensity, then it spreads out . It is clearly something I can touch with my hand and tell that it is a muscle spasm or a nerve and muscle issue. I have been in such severe distress with this that I couldn't remain standing and had to lie on the sidewalk in public. You would think someone would come along side to help but instead assume I must be a moaning drunk. That pain is severe. It was only recently that I started think about strange chest pain as being possibly related to dystonia. You are the first person I have heard a similar or related kind of experience.

I just joined this forum to see what I could learn from others. Maybe I can re-enforce my suspicions on my self diagnosis.

I am self diagnosed assisted only by the internet on the Dystonia issue. Since I couldn't reproduce at will the Dystonia signs in the office I was dismissed with one of those arrogant smirks that we have all seen from certain doctors.

I have been experimenting with an electrical device for 2 weeks. I don't sell it or recommend it. It's called the Sota Bio-Tuner. You can read about it on the internet. There are several U-Tubes and plenty of info. They do not mention Dystonia in their literature but after reading about DBS I thought this device may be of some help. It was $195. That's cheap when compared to doctor visits, treatments and medicines. A person is supposed to start realizing results after a month to 6 weeks of using it once a day for 20 minutes. Two weeks from next Saturday will be a month. We'll see if I bought the snake oil or what. I think I will put this info up somewhere on the site (should be something like a blog spot on this site but I haven't discovered it yet.) , and I'll leave a report of any progress there. "
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Reply #3 - 08/25/11  6:40pm
" Thank you for your kind replies. I have followed up with my neurologist. She does feel that the symptoms are most likely caused by dystonia since I have generalized dystonia. She prescribed zanaflex starting with 4 mg 3 x daily which pretty much knocked me out all day. I tried it for a few days and it definitely helped with the pain, but I don't want to sleep my life away so I asked if we could try a lower dose. So she said to try 2 mg 3 x daily. It still makes me too sleepy. It also lowers my heart rate and blood pressure too much. My heart rate is already low 60 bpm and blood pressure is about 110 over 70. Zanaflex took my heart rate down to 50 and blood pressure to 80 over 40. I was feeling faint and my legs kept giving out on me even on the low dose. I even tried cutting it down to 1 mg, but am still too sleepy to make it through work. So I just take it in the evening when the pain is the worst. I also take clonazepam 3 x daily which helps with tremors and the dystonia to some extent and baclofen 20 mg 3 x daily. Plus, 150 mg of topamax which helps the most with the writer's cramp at least for me. Botox never worked very well for my writer's cramp dystonia. Seems like the neurologists always either give me too much or not enough. The drugs seem to be the best solution for that and just avoiding writing as much as possible. I do get botox for the cervical dystonia and in my legs to keep my feet from pulling inward. It helps most of the time. "
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Reply #4 - 08/25/11  8:37pm
" That sure is a lot to go through. We'll pray for your relief.
Bill "
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Reply #5 - 09/01/11  3:31pm
" Thanks, Bill. "
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Reply #6 - 10/03/11  12:57pm
" Hi Neener, I do have chest and breathing problems with my dystonia. When bad, it radiates from my throat into my chest and up into my jaw. I have been check numerous times and it is not my heart or anything else, the doctors believe it stems from my Spasmodic Dystonia in my throat.

I also have tremors in my neck, hands, stomach and feet. My body doesn't twist yet, just tremors with intense pain. I have spells where my whole body will flail around, but that lasts for only a short time.

I am on Botox injections into my throat so I can talk, Valium and Muscle Relaxers. All are helping my condition at this time. Dystonia is such a roller coaster. Blessings, Jean "
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Reply #7 - 10/06/11  4:07pm
" Thanks for your reply, Jean. Sorry for your struggles with dystonia. My neurologist tried me on zanaflex various doses, but it seemed to lower my heart rate and blood pressure too much even with a very low dose. I was having problems with fainting and very slow heart rate under 60 bpm. Sometimes I had difficulty even finding my heartbeat.

Then when I went for my 6 month visit with my heart rhythm specialist he said that I can't take any drugs like zanaflex. He said they are too dangerous for me with my heart condition. Baclofen is okay though. I'm glad because because I don't think I could walk if I didn't take baclofen. I do also take a low dose of Klonipin for the tremors. It doesn't always help though, but I don't want to take more. I don't like how addicting it is.

So now I just take some Aleve and a nap when I get home from work if the pain is really bad.

Take care everyone and thanks for letting me know that I'm not alone in this. "
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Reply #8 - 10/07/11  9:22pm
" Hi Neener,

When your BP and cardiac output is that low you also risk eye damage, the same as Glaucoma and you're starving your brain not to mention the perfusion necessary to maintain the rest. Doctors forget to consider anything but high BP. Check out the eye treatment issues on the left side of the page on the, tennantinstitute.com .

Bill "
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Reply #9 - 10/25/11  11:13am
" After reading all of this I am beginning to wonder if this could be the root of my issues. I have been having chest pains of various degrees but always in the same location for the past few years (I had myocarditis and pericarditis back in 2007 due to somehow contracting the Coxackie B virus). I always attributed to pains as 'leftovers' from that ordeal. Unfortunately the pain has increased in frequency and intensity over the past year and 5 weeks ago hit without stopping sending me back to the Piedmont Heart Institute.

The problems include variations of intense chest pain on my left side (crushing, stabbing and sometimes a weird burning - not like heartburn), weakness, tremors in my right hand very often (ranging from slight to VERY noticeable), shortness of breathe, and exhaustion.

They have run every test they can think of (cardio MRI, nuclear stress, CT with iodine, sonogram, ekg, etc) and everything shows that my heart is in better standing now than when I was released in 2007. They are clueless as to the cause and referred me to a lung specialist. He put me on meds to slow my heart which was slightly fast, but then suggested the pain may be psychological since he saw nothing causing it.

The lung visit did answer my breathing issues, but not the pain and weakness at all. He put me on steroids for possible inflammation, albuterol, acid reflux meds, and a Dulera inhaler. Wow, I can breathe much better, but then the pain hit right during church this week along with the weakness and shaking. Even now it is hurting.

This IS NOT psychological - the pain is very real! For him to suggest otherwise was infuriating.

So what is it? Is dystonia hereditary? My grandmother suffered greatly with it, my mother suffers endlessly with fibromyalgia, and now my daughter has been diagnosed with POTS which is Dysautonomia-based. I'm desperate to find an answer regardless of what it may be. "
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Reply #10 - 04/26/12  8:13pm
" Hi I know that I am very late in this conversation but, I have General Dystonia and Tardive Dyskinesia(hope I am saying that last part right because that is fairly new.) The Dystonia is not new for me have tried multiple blends of med's and my current recipie is Valium (because Baclofen made me throw up) Dilaudid 2mg, Topamax and Zofran when I have Vertigo and just started Elavil at night for pain, sleep and most likely without him saying it depression. I too have chest pains and have had a full cardio work up and everything checks out great. My Neurologist says it is the Dystonia. I even feel it in my bladder and I think sometimes my uterus. Lately, I am pretty much confined to my house unless I have someone that I can go out with. As you all know one minute you can be fine and the next you can't walk. I now have a transport chair that I can have someone push me in if necessary and it makes me feel more comfortable just knowing that it is in the car ready just in case. Now for the not so conservative part--- I recently tried medical cannabis because it is legal in my state with a Doctors perscription and let tell you I am pain free and my old self when I use it. It is truly a miracle and I thank the Lord and yes I am a Christian and yes I prayed my heart out because I did not want to offend my God. The relief I get when I use it is amazing and I thank God for it every time. I still take my other med's but, I don't need the pain med's as much and I can have a break from Dystonia when I use it and I am thankful!!! "

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