Is anyone having weird jerking of muscles in different areas??? Last night it was in my shoulders and back…It really felt weird…It persisted for a long time…I dont even know how I got them to stop…And at times its my eye…Totally odd…I wonder if anyone can tell me if this is the “muscle tremors” that people talk about having with DD???
The muscle spasms are part of the MS symptoms from Dercums. The doctor explained to me that where the spasms are could be the weak areas in our bodies??? Mine started in my legs, but I have had them everywhere for over a year now. I take a muscle relaxer for this. Skelaxin.
Talk to your doctor about it. It really helps the tightness and eases the spasms.
Good luck!
hugs, Linda
My thigh muscle is jerking on and off right now!
My eyes do it too, and the muscles going through my forearms will do it. I’ve had muscles in my toes, my lower legs, back - you name it. Even, dare I say it, my groin. Now that’s an odd one!
Good thing we all wear sloppy big clothes by the time we get to this point. At least we don’t show every twitch nnd twitter.
me
You know, unless you’ve lived this crazy conditon, or live WITH someone who has it, you just could not believe how bizarre it is! Yesterday morning, my right thing was twitching like crazy. Did it all day. I hae fairly good pain control, but I was aware of some discomfort there. Nothing major.
This morning when I woke up, I stretched out my legs to do some of my usual stretching exercises before getting out of bed. he biggest, tightest bunch of HARD tumors just GROWED at the top of my right knee/lower thigh. The skin is very tight and feels like it’s being twisted when I extend my leg. And I can’t fully extend my leg without mushing this mass against my knee cap! It’s the oddest of the many odd experiences I’ve had.
I don’t know if th twitching was related or not - but usually, when stuff happens like that, seuentually, there is some connection. Oh, and I had a fever all day. Good sign I’m cookin’ up a new batch. Left upper arm is burning today. Guess new friends will be there, soon!
me
Oh yes, all the time. It was happening to me long before I knew I had DD. Just another thing I always thought happened to everybody.
Hi! Thanks for all the hugs you send me! I don’t post much on this group.
I started jerking 9/2001 and was, at first (for 14 mos) dx’d with Essential Tremor and treated aggressively for this but it didn’t work; however, I went to Emory neurological clinic and they said it wasn’t ET that it was “Myoclonic jerks.” I changed neurologists and the new one dx’d me with Generalized Myoclonus, external stimulus sensitive and Abnormal Migraines. I can’t listen to anything rythemic; i.e., music, windshield wipers, loud voices/noise, fluresent lights, stress, illness all are triggers which make me shake/jerk in different and/or all muscles in my body. About 1 yr and a couple of months later, suddenly I started forming painful subcutaneous nodules, had a biopsy of some of the nodules done as well as a muscle biopsy. The surgeon removed a self-contained nodule which was dx’d as normal fat connective tissue.
So, a couple of years later a rheumatologist started treating me and gave me the official diagnosis of DD. He did everything he could to try and treat it but it didn’t work. I have lost several drs that way. They didn’t know what to do or how to treat it so they just “fired” me by saying there wasn’t anything else they could do and that I should seek suggestions for treatment at Vandy, Emory or Mayo and that I should just let my PCP prescribe all my meds and that way I wouldn’t have to miss so much work and I wouldn’t have to pay so many drs since I was out on LTD. It was for my benefit that they “fired” me, it was because they didn’t know what to do.
Didn’t mean to get so wordy but I wanted to explain my history and what those DD “muscle tremors” that you were talking about a lot of us having and what my diagnosis for the same type of thing.
You may want to look up “myoclonus” and take that info to your doctor with you. Well, I am officially worn out. It takes me a long time to type this with only a few fingers I am able to use due to the neuropathy in my hands, which I have in my legs too.
Hope you don’t have it but it sure sounds like you do because myoclonic jerks are “muscle seizures.”
Hugs,
Benita
Count me in ladies and gentleman, I too have severe muscle jerking all the time, it had been bad in my arms and back or a while now but it recently started in my legs. Which have gotten weaker in the last couple of months and lead me to fall quite often. Is a very strange sensation that only WE can explain and understand. I am seein a neurologist this week for the first time. I am going in telling him I have DD and going to talk straight about it and if he isn’t willing to help me research and understand it I will find someone else. There has to be someone out there who is willing to help me and others like the rest of us who need someone who understands this disease. God Bless us all and that we find what we need to survive and thrive!!!
Love Brennie
Presy2:
It is very difficult to treat myoclonus because everyone responds to meds differently and has different presentations of DD. You should know that mine progressed so far as to have internal tremors/jerks which interferes with your breathing and will really mess with your digestive system and colon. I take 150 mg of Lyrica 2 times per day and Cymbalta to help with the myoclonus.
Hope that’s not what you have because it took almost 2 yrs to find an anti-seizure medication that helped me. Thanks for bringing up this subject because I thought I was almost alone in this.
If you need further info, I suggest you do a web search for Generalized Myoclonus. My doctors’ theories are that there are nodules/tumors which have formed on nerve endings and if they become inflammed at all, they press on the nerve endings which triggers the muscle seizures.
Hugs to all!
Benita