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03/07/2012 06:53 PM

I need to talk(page 4)

maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Yes, I have read that a certain percentage of RSD patients will have dystonia and I know there are a couple of people here who do. I do not have it, but it sounds to me like you are right about it. Isn't it frustrating to be told by several professionals something that you know not to be correct? I've gone through that, too. Good for you that you did figure it out! I wish that there was better news, though, about treatments. Don't some people take muscle relaxers to help with this? Probably someone will post here that has it. I hope you can find a way to control it some!

gail

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03/07/2012 07:47 PM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Hello Leftwrist

Yes I've had Dystonia for several years now. My body jolts with distorted movements that I cannot control. More often at night, but has started in the day time and in an upright position about 2 years ago. Not at bad, but sometimes noticed by others.

The jerks are quite intense and painful. They start and stop without any warning.

Muscle relaxers such as Zanaflex/Tizanadine may help, other than that not much more really.

I wish you the very best and also wish you pain eased days and nights,

~Twinkle


03/07/2012 09:23 PM
cindy61
cindy61  
Posts: 540
Member

Hi Leftwrist,

I have RSD for 10 years and spasms in my arms, legs and stomach for at least 8 years. I also read about Dystonia. They started noticing what we call RSD in the civil war when men would have an arm or leg cut off but they still had very bad pain there for the rest of their lifes even tho there was no leg. For a long time ago they called this disease Dystonia but a few years later gave it it's own name. Actually it has been called quite a few things through out the years.

The Dystonia or muscle contractions have nothing to do with being nervous. I have them while I am sleeping and some are so jarring that they wake up my husband. My stomach feels like it is in a vice and someone is squeezing it really tight. I have had a tumor removed from my stomach, I have ulcers, GERD, gasritis and a hernia. I know what those feel like but the squeezing in my stomach has nothing to do with any of them. I was evev scoped to make sure that there was no new problems with my stomach.

Welcome to the site and I pray your pain will be better for you this week. (and good for you on showing your doctor something they should of known!!)

Cindy61

p.s. I am wrong on that after the civil war it was given a name which I can't remember but at some time they called RSD Dystonia.

Post edited by: cindy61, at: 03/07/2012 09:55 PM


03/15/2012 03:34 AM
LEFTWRIST
 
Posts: 69
Member

Hi to A3k and weepandsmile I left work today to see my pain specialist and show him my spasming in my right hand and stomach.When I suggested to him that it might be Dystonia he said dystonia was a different set of symptoms. I said could I at least try some of the meds that are being used to treat this? He said put that on the back burner and he would get me to see another pain specialist for a 2nd opinion because at the moment he does not know how to treat me because he hasn't seen anyone like me.So to everyone out there keep asking questions rather than just believing what you are told because no one knows all of the answers.

03/15/2012 09:50 AM
pjs
pjs  
Posts: 241
Member

LeftWrist;

you are so right. what I have done is i researched crps so much that i have hopefully read up on the subject before I go to see my doc.

the doc that I was previously seeing had the most knowledge about crps than any of the other docs in the practice. when I went in last friday that guy was gone and the new guy know nothing about crps/rsd.

i beleive this is the biggest hurdles we have to overcome and that is when the physicians we are seeing do not know how to treat us. or we know more than them and most docs have that god complex and will not admit they need to learn more about our conditions.

so with this new guy it is like i am going backwards instead of progressing.

i have not followed this conversation all of the way through but it looks like you all are discussing dystonia.

back in oct 2011 I decided i was going to start walking normal in the hopes of retraining my brain that it really does not hurt. i have made some great strides, still not 100% but.

i realized that when i was starting the walking normal and not allowing myself to limp I noticed that when i walked my feet were ever so slightly curving in and i was walking on the edge of my feet. remember it was ever slight but i have worked and worked and i really concentrate on walking with my foot complete flat. I did not even realize i was walking on the edge of my feet.

i definitely went through struggles and pain but i am more walking more and more flat footed than i was before.


03/16/2012 07:01 AM
LEFTWRIST
 
Posts: 69
Member

Wow this group is great to talk to.I know that I do certain things that I don't pay attention to until i see that other sufferers are doing the same. Like walking funny and having recurring spasms in the body.I have noticed that I tend to veer to the left when I walk because of my CRPS. I was thinking I was going mad because my spasms would come and go, but it was always there like a tickle in my throat and if I relaxed my thoughts and body i would break out in little to intense spasms.I have found the name of a doctor who runs a pain research institute in South Australia with all of his fancy letters after his name. i am going to e mail him and see if he can shed some more light on my distonia. People are very touchy, feely and yesterday after i told the new first aid officer at work about my CRPS and how it had gone up to my shoulders he gave me a a nice good on you slap on the shoulder. I didn't know whether to laugh or cry and the look of horror for what he had done to me was also very funny to see. Anyway thanks for listening Tongue

03/16/2012 07:31 AM
pjs
pjs  
Posts: 241
Member

Interestingly, i am talking to myself when i walk. and it seems to help but so far it does not help for long.

I am adding this becuase if I can get the pain to lessen if I let my brain wonder and look at stuff the pain comes right back. it can be very tiring because i have to always be on top of it always have aware of my walking. i hope one day that it will take and take forever..


03/16/2012 07:40 AM
revvanbus
revvanbus  
Posts: 2032
VIP Member

It's the opposite of the old medical joke where the patient moves say an arm in a particular way and tells the medic "it hurts when I do that" and the medic tells him "don't do that." Now you tell your first aid officer"my pain has moved to my shoulder" and he slaps the shoulder. Stupid person! Not you, him (or her). Ask if he/she has ever had a bad sprain, broken bone,...Then say "and if someone after you told them the arm/foot was injured slapped it, how would yu react?. Stupid medical person.

I am sorry you are having trouble communicating to your pain management people. I wish I could say that was unusual. It is really hard for folks even trained in pain management to understand what we go through and live with. I have found that I have to be very descriptive. Instead of "it hurts to walk" I would say when appropriate "when I put weight on my feet sometimes (or in my case always) it feels like i am walking on broken glass." Or "when I take a shower each drop that hits my bad arm feels like a miniexplosive going off against my skin." Or "the softest sheet, sock, pants feel like rough sandpaper on my skin." You get the picture? just saying it hurts does not get the image to them about the misery you are in. Don't over tell it. Make the level of the image match your pain. But the pain doc does not know you or your pain so it is important that you learn to talk in descriptions he/she can identify with. Just a thought.

Sending hugs and prayers your way!

Rev.


03/16/2012 05:56 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hey leftwrist,

I can't believe that guy slapped you on the shoulder. I hate to say what that would make me want to do back to him! Of course, I would take it like you did and just be in pain. It's bad enough when people don't understand or believe us, but for them to slap/hit or anything else where we are hurting is insane! I hope you can ease away from that guy a bit. I hope you can find some good help from the doctor you're going to email, also. Hang in there. It's all we can do!

gail


03/16/2012 09:30 PM
cindy61
cindy61  
Posts: 540
Member

Hi Leftwrist,

So sorry to hear that someone actually slapped you right where you said it hurts. I do know the feeling tho. Most of my pain is in my neck, shoulders, both arms, both hips, part of my right leg and stomach. Like I said before I have the same problem with spasms. Some times they are so strong they knock the wind out of me and I have to grasp something or I feel like I will fall off the chair. Any how everybody knows that is where I hurt yet everytime I see them they give me a BEAR hug. It hurts so bad I want to kick them but I know they are just trying to show their love to me. I really wish they find another way, like a tiny kiss on the cheek!!

I am glad you found a doctor where you live to get some information from. The sooner the better with this disease. Hope you are feeling better too!!

Cindy

p.s. next time that someone slaps you on the shoulder slap them back and ask them if that felt good? when they say no then tell them to times it by 100 and that is what it felt like to you.

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