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Old 07-10-2013, 08:20 AM   #1
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proudgranny5 HB User

After many years of on going problem, and a few years of serious pain. I'm now wondering if I may have some form of dystonia (distonis?)

I (and my doctor) have been trying to figure out the pain in my side, shoulder, pelvis, hip (all on the right side mostly) for a few years. It's hard to discribe the general pain. It frequently feels like the muscles are just "tight" Like if I could just stretch it a bit further it would release and feel better, but of course I never can stretch it far enough. I have this in my neck on the right side as well. And even have off and on issues with my eyebrow/eyelid on the right side. I've had that for a very long time. I've also was born with one leg that my mom used to say was "too tight, and she said they slipped something and I was in corrective braces for quite a while. Unfortunately my mom has been gone for a long time and I can't get more info.

I've always suffered with cramps and charley horses, but the last few years it's gotten muxch more severe. My leg muscles periodically cramp so bad it pulls up and twists my leg. I've had to stop on the side of the road and get out of the car I was driving becuase the cramped up so bad I couldn't straigten them. I've had cramps so sever that it literally makes a crater in the calf muscle. My hand cramps to the point my finders are all twisted together.

Becuase I have also been getting severe right side cramps, I've been tested for appendix, hernis, and gall bladder...all of which are okay. I was recently sent to a rhuematologist, and while I have some apparent minor arthris in some joints, they don't beleive the muscle issues are rhuematological.

I have done web searches over and over, putting in my varied symptoms trying to find anything that matches. And yesterday for the first time I ran across something that sounds like me. Distonia. Not sure what to do about it. Not sure what kind of doctor, or testing, or anything. But I DO know that 3 out of my 4 kids have similiar issues that I had at their age. I hope they're not headed for the later issues. But I continue to try and find out what's going on.

So, anyone know anything about this?? Any insight would be welcome.



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Old 08-06-2013, 09:06 AM   #2
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Smile Re: Dystonia??

Hi Cece,

Iím sorry you are having so many problems. I have been diagnosed with focal dystonia in my left foot. I had a great deal of problems finding the right doctor, too. I was sent from podiatrist to neurologist to orthopedic surgeon, and back again. Many of whom had to leave the room to look the word up after I told them what the neurologist suspected it was. I donít know how much help it will be to you, since some of your symptoms are much different than mine, however, I can tell you a few things about my experience.

Mine began with a sudden charley horse in my left foot just as I dropped off to sleep. In the morning, some toes would be touching when they never had before. Nothing major, just something slight that I noticed. Eventually the force of the muscle contraction (which originated in my calf) and the fact that I continued to walk on the foot, caused the bones of my left foot to shift. I finally will be having triple arthrodesis surgery with Achilles lengthening to correct it later this month. Depending on the type of dystonia you have, if you have it, the treatment can vary from a pill called Sinemet, to Botox injections, to deep brain stimulation. Some dystonias are hereditary, some are not. Some are primary, meaning it is the only problem, and some are secondary, meaning it happens because of another problem you have. The kind I have is basically a miscommunication between my brain and my muscles.

Dystonia is not that uncommon, yet many people have not even heard of it. If you have dystonia, you would need to see a movement disorder specialist, or a neurologist, if one is not available near you. Do some research on the following web sites before you do anything else so you can see if what they say is similar to what is happening with you.

If it is dystonia, there are a lot worse things you could have, so donít be discouraged. I hope you will be able to make some progress because the not knowing is the worst part. Good luck and keep us informed.

Take care,


Last edited by Administrator; 08-06-2013 at 09:22 AM.

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Old 08-20-2013, 11:47 AM   #3
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Re: Dystonia??

I have cervical dystonia, which is where my neck pulls to the right. I recognized your description of tight muscles. I am due for my second round of Botox injections. They help to make the muscles more loose so I am not in so much pain. This sounds like it may be one of your problems. I hope this helps. Good luck

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proudgranny5 (08-21-2013)
Old 04-17-2014, 10:38 AM   #4
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Re: Dystonia??

Originally Posted by lilygirl254 View Post
i have cervical dystonia, which is where my neck pulls to the right. I recognized your description of tight muscles. I am due for my second round of botox injections. They help to make the muscles more loose so i am not in so much pain. This sounds like it may be one of your problems. I hope this helps. Good luck

hi, i have had cervical dystonia for 10 years. I am in constant pain, good days and bad days- even the good days i still deal with pain. But it could be worse. You have symptoms similar to dystonia; there are multible forms. I have never heard or read symtpoms like yours associated with dystonia. Perhaps deficiencies of some kind or other causes. If you want to find out if you have a form of dystonia see a neuroligist that specializes in movement disorders. God bless. Tommy in dallas

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proudgranny5 (04-18-2014)
Old 04-18-2014, 08:44 AM   #5
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Re: Dystonia??

Hi Tommy, I too suffer from Cervical Dystonia as well and have also suffered for 10 yrs. There are several forms of dystonia so it's best to have it check out.

Old 08-22-2014, 08:00 PM   #6
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o0lissa0o HB User
Re: Dystonia??

Hi Cece,

I have dealt with many of the same problems for most of my life. At 32 now, I have not had a pain free day since I was 14. I've been to countless doctors trying to figure out what's going on, with no luck. I also suffer from sciatica as a result of a herniated disk in my lumbar spine. I had a huge flare up in May, and went to the doctor for my normal combination of steroids, pain killers, and muscle relaxers when this happens, and they discovered a pretty severe muscle weakness on my right side. I was referred to an ortho and had an MRI of my lumbar spine ordered. The disk herniation is still there, but he said it wasn't nearly bad enough to explain the neurological symptoms I was having (I also developed a tremor, numbness and tingling, and it was affecting multiple joints.) Long story short, after having my brain, and my entire spine imaged (A nuero surgeon was so concerned at how bad I was by the time I saw him, he was convinced it was a tumor on my spine), I was eventually referred to a neurological movement specialist. After a lengthy evaluation, he asked me to try a medication, and I began noticing immediate relief, and was diagnosed with dystonia. I've suffered the same types of cramps and spasms as you have, for most of my life. I've always tried to explain this type of "pressure" I feel in my body and my constant need to stretch and or crack joints so they don't feel so tight, and everyone just acted like I was crazy. It's all still new to me, so I've researched endlessly about the disease, and joined a group with people with various types of the disease, and your symptoms sound totally text book. The twisting and pulling is the most classic symptom there is, and it can occur in every area of your body. There are also known genetic links, and chances are, if your children are suffering with the same symptoms, and you were in braces as a child, you likely suffer from an early onset, genetic form.
You should definitely go see a movement specialist and be evaluated. Getting a diagnosis, and having your kids be evaluated as well could be very important, and help point you in the right direction for improving your quality of life.
As someone who understands spending your life in pain and with all kinds of crazy symptoms, sometimes just getting answers can help make you feel better. While I'm still suffering daily, and the medication only helps control some of the symptoms, and only on some days, it makes me feel better that we are on the right path now, and at least I know which direction to look for help. Best of luck to you!

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