I am new to the message board. I'm a 41 year old female that was diagnosed in 2009 with myoclonus and dopa-responsive dystonia. I didn't get the fibromyalgia diagnosis until the beginning of this year. I'm not sure which really came first though. I have had constant pain since my early thirties. Then I thought that the myoclonus and dystonia was making me feel awful. Really...how much jerking and locking up can a body do without some kind of pain? It has caused the demise of a relationship and some friendships because no one can understand that doesn't have Fibromyalgia. It hurts if I am lightly touched on my shoulders, arms, and legs. I'm tired all of the time and admittedly sometimes just right out cranky. I am currently taking Cymbalta for the fibromyalgia and Dopamine for the dystonia. Nothing helps with the myoclonus.
Does anyone else out here, have accompanying myoclonus or dystonia?
Any feedback would be much appreciated. Have a wonderful day. Thanks~
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I don't have the other 2 disorders you have but having fibro alone causes relationship uses on top of pain, fatigue, ect. Unfortuetly even if there was more info on Fibro people still would never understand if they have never had it. They don't understand your fatigue is more than just being tired like when they have a long day. They think the muscle pain is minor compared to what it really is... All we can do is do our best. We can't make them understand. We have to learn to tell others no. We have to look out for ourselves. All we can do is try to educate them. Doesn't hurt to sty away from negative people that just don't get it. Unfortuetly most of us have more than fibro which is bad enough. But luckily we can come here, vent, ask questions, get the support from others that understand & also give support back.
Sorry this didn't answere your question. You'll notice that many people read your post but don't answer. Sometimes it's just because we don't have the right answer... But still here for you
Thanks so much for the reply. I really do appreciate it. There are so many days that I just want to cry and then cry a little more. I'm still trying to learn to tell people "No, I can't do that". Sometimes "that" is as simple as dinner wtih friends but I'm just too worn out to even make the effort. Thanks again.
Oh yes, nothing like people bugging you to do something & won't take a simple no as an answer... It's hard trying to explain that it's just too much, you don't feel well, you're exhausted, hurt too much, ect...
I think eventually people will know you enough to understand a simple "no"... Just takes time...
hello and welcome,
my sis has a dear friend with dystonia. it takes special people with loving hearts to be the friends you keep. most find it fearful so they turn away when you need them most. i have seen her locked up and it's a heartbreaker. you have my deepest empathy.
i can't recall anyone here who has the trio you have. however we do have strong shoulders and we don't pass any judgments here. we just care and help each other.
ps i will look up the other thing you have and educate myself. looked it up and girl all i can say is ouchie! hugs to your body.
Last edited by bluelakelady; 05-24-2012 at 06:35 AM.
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I do not have the other 2 but wanted to give you my support!!! It is never easy to be sick with some kind of disease or disorder that will be with you for life. You will find TONS of support here. On my lowest days I will come here sometimes and vent and just to read the encouragement others give are enough to make the really bad day easier.
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