[CZZ74]

hi is anyone else having strong jerks in there abdomen, mine literally change my position in bed. very scarry. I have a llittle symhony going on all the time now, face , arms abdomen legs, between cramps, charlie horses, but the jerking is what is distrubing me the most, they are very stong. Is anyone else experiencing this??? I am in stage iv rsd full body. thank you please let me know so I dont feel as though I am the only one. thanks cz

[nancyinLA]

Originally Posted by CZZ74

hi is anyone else having strong jerks in there abdomen, mine literally change my position in bed. very scarry. I have a llittle symhony going on all the time now, face , arms abdomen legs, between cramps, charlie horses, but the jerking is what is distrubing me the most, they are very stong. Is anyone else experiencing this??? I am in stage iv rsd full body. thank you please let me know so I dont feel as though I am the only one. thanks cz

only 15 mos. out - affecting my left side.... have tremors, especially typing. muscle spasms also in left arm & leg.... hope i never have full body. uhmmmm

[cindi1965]

I am beginning to have to have the tremors and shakes. My left leg, where the RSD began, jerks at night. It is a troublesome problem that is just one more thing to add to the list.

[loretta]

Hi CZZ74,
I'm sorry you are having this disturbing symptom. I've had RSD 14 years, now full body. It was about 9 years ago that I went full body and had the violent jolts, jerks, spasms. They would come at night in bed, and resting watching TV. They were like electricity and would go thru my brain from a deep sleep and would life my head off the pillow. I went on the anti-seizure drug neurotin to stop them. Had to go up to 3200 mg. but that stopped them. I later changed to the newer drug lyrica, and that one seemed to help more with the burn pain. I hated both of them. They cause weight gain, so be careful if you go on it. RSD can go internally-perhaps your abdomen? Others have internal RSD. I do. Last October I asked my Dr. if I could go off lyrica, and I was off by January and have only had a couple jerks since then. I hope it continues. I lost 30 lbs and have another 30 lbs to loose to be where I've always been. My Dr. is a neurologist, pharmacologist, and psychiatrist. He is just finishing up a pharmaceutical study for seroqouel. I wasn't getting good sleep for months. I couldn't fall asleep till 5-6 a.m. Was on Ambien CR. He put me on seroquel 300 mg. and I sleep 9 sound restorative hrs of sleep, not waking up till morning. He'll be writing the report soon. It's amazing. I take mine at 7 pm and on an empty stomach. I don't eat an hour before or an hour after taking it. The sleep caused my pain level to drastically drop. I cut my vicodin in half and also taking half the anti-anxiety med.
I'm so sorry you have full body and stage iv. Is your jerking when you are resting or sleeping. My spells weren't active while I was moving around. I am actually surprised my shocks didn't come back. I think part of it is, I'm more relaxed, I have a lot of different coping skills. Mentally, emotionally, I'm calmer. I know the anti-anxiety med Lorazepam was a huge help. I'm on Cymbalta 120 mg-went off wellbutrin xl and paxil cr both double dosed. i take two high blood pressure meds. Cut back when I lost 30 lbs. Dr.s thinks when I loose my last 30 I'll be able to cut back more. Vicodin is my pain med.
I'm mobile, thanks to this Dr. and swimming. My toes were curling up, not touching the floor, when he had me in the pool doing exercises dailey. They now touch the floor. I have one crippled hand, misdiagnosed. I wasn't diagnosed for 4 years.
My guess, is that your Dr. will want to put you on anti-seizure med. I hated the brain electric shocks. They scared me.
How did you get RSD? When did you get diagnosed? Hope the best for you. My Dr. just built two clinics here in Scottsdale, Paradise Valley and they both have HBOT. This economy has affected our business. I'm so grateful I'm doing better, with sleeping so well. I can go out and get new accounts. I should be able to do the HBOT this winter. It's expensive. Insurance doesn't cover it for RSD. Maybe someday they will.
Take care and let us know how you are doing? loretta

[SBOWLING]

Hello,

I also have full body RSD. When I relax watching TV or reading and when I'm sleeping. I get awful tremors or jerking. When I'm sleeping it feels like my entire body is drawing up and when it releases the jerk raises my whole body off the bed seveal inches. I notice this happens most often when I am flaired or really tiered.
I take 1800 mg of Neurontin. Once my body adjusted to the medication it helped the burning of my skin and the jerking. I also see a Chiropractor (activator) always 3 days a week sometimes 5 days a week if I am flaired.
I hope you find what works for you and you get some relief.
Take care,
Sherrie

[cindi1965]

I can't take any seizure meds for my tremors and spasms they make me hallucinate. I take Baclofen 3x a day and Xanax up to 4x a day. I am on Vicaprofen for pain along with Amitripylene, Lexapro and Cymbalta. They haven't found the right "cocktail" for me yet. I have an appt on Monday so, I hope they figure something out since my RSD has spread to my right arm just since May.

[stressedout]

I have RSD/CRPS in my hand/arm and think it's spreading to my shoulder.I have tremors and also my arm jerks or sometimes it will just shake for awhile. I am only about 6 mos in. Had 6 blocks and am now on Cymbalta and Lyrica.

[CZZ74]

Loretta, thank you so much for the additonal information about sleep and brain shocks, yes i have those they are absolutely terrifying. I do not have those under control yet. I take 300 mg of lyrica a day. Yes the severe stomach jerks are primarly when i am resting however they do occur when i am sitting as well. they do not occur when i am in movement you are right.
I call them brain shivers. Horrible. the stomach jerks are very violent -as of yet are not being controlled by any of my meds. could you tell me what causes those?? I too have not slept through the night in 5 years. I am happy to hear something is working as they have tried everything with me. My rsd began with an injury to my shin when i stepped in to a sprinkler well that the lid had been left off of.the pain was so shocking the injury opened my leg to the bone as there is not much sking there but primarly a minor injury but so much pain. I guess that is how it begins for most people- they did however fail to do a debridement, they found grass in it 3 weeks later - along with severe infection. thank you again loretta, cz[












Lo
QUOTE=loretta;545549]Hi CZZ74,
I'm sorry you are having this disturbing symptom. I've had RSD 14 years, now full body. It was about 9 years ago that I went full body and had the violent jolts, jerks, spasms. They would come at night in bed, and resting watching TV. They were like electricity and would go thru my brain from a deep sleep and would life my head off the pillow. I went on the anti-seizure drug neurotin to stop them. Had to go up to 3200 mg. but that stopped them. I later changed to the newer drug lyrica, and that one seemed to help more with the burn pain. I hated both of them. They cause weight gain, so be careful if you go on it. RSD can go internally-perhaps your abdomen? Others have internal RSD. I do. Last October I asked my Dr. if I could go off lyrica, and I was off by January and have only had a couple jerks since then. I hope it continues. I lost 30 lbs and have another 30 lbs to loose to be where I've always been. My Dr. is a neurologist, pharmacologist, and psychiatrist. He is just finishing up a pharmaceutical study for seroqouel. I wasn't getting good sleep for months. I couldn't fall asleep till 5-6 a.m. Was on Ambien CR. He put me on seroquel 300 mg. and I sleep 9 sound restorative hrs of sleep, not waking up till morning. He'll be writing the report soon. It's amazing. I take mine at 7 pm and on an empty stomach. I don't eat an hour before or an hour after taking it. The sleep caused my pain level to drastically drop. I cut my vicodin in half and also taking half the anti-anxiety med.
I'm so sorry you have full body and stage iv. Is your jerking when you are resting or sleeping. My spells weren't active while I was moving around. I am actually surprised my shocks didn't come back. I think part of it is, I'm more relaxed, I have a lot of different coping skills. Mentally, emotionally, I'm calmer. I know the anti-anxiety med Lorazepam was a huge help. I'm on Cymbalta 120 mg-went off wellbutrin xl and paxil cr both double dosed. i take two high blood pressure meds. Cut back when I lost 30 lbs. Dr.s thinks when I loose my last 30 I'll be able to cut back more. Vicodin is my pain med.
I'm mobile, thanks to this Dr. and swimming. My toes were curling up, not touching the floor, when he had me in the pool doing exercises dailey. They now touch the floor. I have one crippled hand, misdiagnosed. I wasn't diagnosed for 4 years.
My guess, is that your Dr. will want to put you on anti-seizure med. I hated the brain electric shocks. They scared me.
How did you get RSD? When did you get diagnosed? Hope the best for you. My Dr. just built two clinics here in Scottsdale, Paradise Valley and they both have HBOT. This economy has affected our business. I'm so grateful I'm doing better, with sleeping so well. I can go out and get new accounts. I should be able to do the HBOT this winter. It's expensive. Insurance doesn't cover it for RSD. Maybe someday they will.
Take care and let us know how you are doing? loretta[/QUOTE]

[Dew58]

Dew

[Breezy55]

CZZ74: I also have these tremors and body jerks. They usually come at night time for me. Have you tried any kind of pt? Also I wanted to know if you use any kind of swimming type of therapy? I am just asking you this because I know that it has helped me to relax my body which helps to reduce the jerks that I get. Which are mainly in my legs and in both arms.I do get tremors in my abdomen only when I get some type of a panic attack. Your right along with everyone else the worse thing is that this keeps you awake during the night. I't seems right when I am about to fall asleep then BAM-One of those jerks comes along. My problem is I can not take many meds because I have chronic IBS. I wish You the best! Breezy55