I have MYOCLONUS...

[SavedByTheShoes]

im on meds now but i still need prayers. i just got back to school after being out for two grading periods and its been horrible. i was to weak to keep in touch with my friends while i was out so now that im back they have all ditched me, and the ones who stuck by me refuse to understand that i cant do things like i used to not even walk for more than a couple of minutes.

whats myoclonus? basicaly my dyapram jumps so harsly that it causes me whole body to jerk very harshly. its like being in a gym all day. i can get up to 25 a minute and it can get quite painful. does anyone else have deises that they are recovering from? whats the hardst part?

 

[CynthiaSpeaks]

I have never heard of myoclonus, but hun, I am SO sorry. You shouldn't have to deal with stuff like that at such a young age. Will you grow out of it? What is the long term prognosis for you?

I have fibromyalgia, so I understand your frustration at not being able to keep up. I can't either and it is difficult to sit by and watch others go about their life.

I can only offer you this about your earthly friends: they need time, and they need education. Talk about your condition, and invite them to do activities that you are able to do. They are probably distancing themselves because they don't know what to do or say with you. Education will really help that.

When I first came down with fibro doctors would say women were just lazy. It hurt and was frustrating. Now people know more about it and are more sympathetic to me when I'm too tired to do stuff. As you get older, you also find true friends who will stick with you thru anything. In high school everyone is too absorbed with their own problems to think outside themselves.

Give it time, it will all work out for you. *Hugs* And take care of your health!!!

 

[SavedByTheShoes]

they dont know i could have it for ever it might go away and come back or it could go away. theres no way to tell, but thanks for the advice!

 

[CynthiaSpeaks]

Yea, you've got to love doctors, right? That's why they call it "Medical Practice." We are their guinea pigs. Grrrrr!

Okay, I just read up on Myclonus, and it explains a lot about your friends. I am more convinced they feel self concious because they don't know what to say or do. And they may worry that they will get it too. A lot of that is immaturity on theiri part.

In addition to educating them, when you have an attack try to be humorous about it. Kid around about it, and put them at ease. The more you take charge of what is happening the less power their actions have over you. And the more relaxed you are about it, the more they will be too.

It's a bummer because right now you are the one who needs to be reassured and treated with kindness. But as you can see, it doesn't always work out that way. But it will make you stronger!

 

[SavedByTheShoes]

lol thaats for sure. i think my records going five times in week? ive looked like every kind of drug addict... ive gotten poked with needles... they gave me way to much medicane the last time i went to school and i was on a medical high and a rumor went around school that my meds were "medical marajuana" yes i know i cant spell lol. but ive been on just about every drug possibly. my mom said we could go on the black market and make millions lol.

 

[SavedByTheShoes]

what exactly is fibromyalgia?

 

[CynthiaSpeaks]

Well, I think it is a good thing you can't spell marajuana! I'm glad to see your sense of humor!

 

[CynthiaSpeaks]

Here is a link: http://www.fmnetnews.com/pages/basics.html

Basically I am exhausted all the time, have joint, muscle and ligament pain. Even my skin hurts sometimes! It is an autoimmune disease.

The best thing you can do for it is what you want to do the least: exercise. It comes and goes. Right now I'm having a bad attack of exhaustion. The mind is on hyperalert and the body is not cooperating.

They are finding it tied to hypothyroidism and I am trying to find a doctor who will take me seriously about that "new research". I want my thyroid tested because I have a ton of symptoms for hypothyrod, as well. But so far, I can't find a doctor who will take me seriously enough. Long story, I won't bore you with, other than to say I argued with my doctor about it, which he did not like. They don't want you doing research on the internet, that's for sure.

 

[SavedByTheShoes]

silly doctors. its like how my dad is about the car if hes not in the car when something isnt working right, it didnt happen. dont give up you know whats going on with you better than they do! i knew something was wrong with me but what was i going to tell the doctors im tierd all the time? i had to wait untill i got noticeably bad.

 

[CynthiaSpeaks]

It must be a guy thing because my husband is like that about the car, the house, whatever. What? Does he think I make stuff up. Silly boy.

No, I'm not giving up.

 

[Strong in Him]

(((((((((((((((((hugs))))))))))))))))))) to you both. I am so sorry you are going through these things, it sounds awful. My aunt has fibromyalgia, I don't know how seriously though, and I have a friend with it who is almost bedridden. A lot of the websites I've looked at say it it very similar to M.E/CFS, which I've had for the last 14 years. I don't get much pain - not from the M.E anyway, mainly fatigue.

 

[SavedByTheShoes]

It must be a guy thing because my husband is like that about the car, the house, whatever. What? Does he think I make stuff up. Silly boy.QUOTE]

haha, my mom will just bust out and be like meeeeeeeeennnn. and leaves it at that. haha i love her.