I know we all experience slight to moderate tremors with Dercums but recently I have had a weird experience. I was in my kitchen and got a bad pain in my head and almost passed out. My husband helped me into bed and it took 3 hours to be able to get up. I haven’t been able to sleep in 2 weeks or so. When I was napping in my living room my son said my body jerks bad. My husband woke up last night and woke me up. It would take a freight train to wake up my husband. He said I was jerking so bad in my sleep that it woke him up. I only got 2 and a half hours of sleep last night. I take Lunesta 3 at bedtime. It has always worked until now. I just wanted to know if anyone else has experienced this or not. My doctor who is AMAZING prescribed Adavan for me. I will get it Friday and let you all know. Hugs, Linda
Linda,
Google Myoclonus or Myoclonic seizures. This seems to be something that some DD patients have developed. I am having a problem with it too and I know of a couple of others who are having major problems. They have been dx with Myoclonus.
Pamela
Yikes girl. I often wake my husband up screaming, but have never had any
problems with shaking. Have you started a new medication recently ?
Have you been throughly diagnosed ? (asks the woman who has only seen her
family doctor so far)
Im so sorry for all you are going through. This disease is so mind
boggling. Just when I think I am settled with it, I find out something
else. And the number of people who have this.
You should for sure tell your doctor about the incident in the kitchen.
That is not a good thing, and even if it only happens once,your doc needs
to know.
I think of you often. Wishing you a pain free minute! (all i can wish for
at this point).
Hugs. Let me know what doc says.
Calle//Carin in AZ
What meds are you on?
I know of several that can cause the jerking. Sounds like PLMD and/or Restless Leg Syndrome. If you have a sleep study they can figure out which and will recommend meds to help it.
Benita
Good advice Benita. Linda I was interested in the fact that you are not sleeping. I am not on anything to make me sleep except Excedrin PM but I have basically quit sleeping. I doze off in my chair 20 minutes after I take the Gabapentin for about a half hour. I am up when the Sunday paper comes, I am up to greet the dawn, my poor husband is staying up later and later as I don’t go to bed. I get bored after laying there an hour or so and get back up and read or write. I can always find something to tempt me to write a response on Careplace as you guys have so many of my symptoms. I think Linda’s problem does sound like a medication dosage problem and why are you not sleeping when you take sleep meds? I was thinking of asking me doctor for something as I can’t sleep. I think in my case it has to do with not being able to move enough. My feet have been so swollen and the rest of me hurts so bad I can only stand for minutes and walk just a few steps. I get winded going out to the car and we have an attached garage! OH well, four o’clock time to get in bed and not sleep! I hope you get some help Linda it just sounds like you keep getting one new symptom after another! This DD shows not mercy! Keep the faith and fight on!!
Hello There,
Davana Here, I was reading your post and related completely.
I had trouble sleeping because of myclonus jerks waking me up startled with racing heartbeat and then sometimes pain in legs or wherever new growths were starting would wake me. I was put on ambien or ( generic ) Zolpidem. In just a few minutes ( 15-20 ) I am sleeping, and usually sleep at least 4 hrs straight if not not 6-8. It is a lifesaver. I don’t take it every night though, as it can lose its effectiveness or become addictive… so I take it about once a week and I get a really good sleep and no fear of addiction. Just thought it may be helpful for you to ask your Dr about.
Hope you sleep well soon,
Davana
Benita,
I am on alot of meds and spoke to my doctor about the situation. I have had a sleep study done just a year ago because of my oxygen dependency. My doctor said there isn’t anything I am taking that would cause this. As I stated I already take a muscle relaxer 3 x a day. I think @ozziespamela is on to something because I believe it is electrical problems in the brain. Could be a DD symptom??? Or not??? He gave me an antiseizure med and I am trying it tonight.
Thanks for your response. Hugs, Linda
I haven’t had any new meds recently. I did call my doc right away, it scared the ^&%$ out of me. He prescribed an antiseizure med to try. Read what @ozziespamela wrote to me. It makes perfect sense. I have had medical problems since I was 2 months old with whooping cough. The list goes on from there including arthritis in my knees which started at 5 years old. I could tell you alot of stories about my health history to keep you busy for an hour. My doctor doesn’t believe that it is DD related but at least he is willing to try something right away. I am soooo lucky that my doc will call me at home anytime. He said I am his VIP. 
I have had MRI’s scans and many many other tests and surgeries like everyone else. I seriously think I am more advanced than most on Careplace but I always get surprised by someone who comes up with a great idea to run by my doc.
Thanks for your response, many hugs, Linda
Also look up Periodic Limb Movement Disorder (PLMD) which use to be called nocturnal myoclonus.
Benita