I've been trying to catch up on all the posts I haven't gotten to read lately, and I see the questions for people with RSD 5 yrs or more. Allen, I saw you said something about meds making it difficult to pee. I've been concerned about Reed lately because it takes him forever to pee, and I was wondering if it could be meds, or maybe something more serious like prostate.
Also,I saw some remarks about muscle spasms in that same thread. Reed has always had this thing where when he was just about to fall asleep, he would flinch..sometimes hard enough to nearly flip me off the bed. But, since his injury, and RSD, his spasms are getting terrible. He always has them in his RSD leg, but now he's getting them all over.. almost a constant jerking over his entire body one part at a time..and only when hes sleeping or nearly asleep. It's honestly keeping him from resting, because it starts just as he's nodding off.
Could these things be from meds, or rsd, or what? He needs to talk to his PM about it, but things have been happening so fast with his SCS we really haven't had a chance.
Any input is appreciated as always and hope everyone is well!

Hi Rita,

I also have these. My doctor told me that they are myoclonic jerks. I was on Lyrica at the time and it did the same thing that you're talking about. I have since been taken off that medication. I do still have the jerks but not as often. I am also on neurontin which may contribute to this.

that's interesting, because Reed was just switched from neurontin to Lyrica about a month ago. They are getting really bad, and he's very frustrated, and lack of sleep is problem enough with pain..let alone jerking all night. I'm going to call his doc today and let him know about this. Thanks dealingwithtos.

I have the problems with peeing as well...and i think that it ihas something to do with RSDS in the lower part of the body taking over the urithra. I am not positive, but I think that might be the case...because I have taken many pain meds before being givin RSDS by my doctor. The pain meds had not caused me to have problems peeing.

I think that it is because the RSDS is taking over the urithra. I have taken many pain pills in my past due to having Endometriosis, Poly-Cystic-Ovarian syndrom, IBS, Kidney Disease, and Heart Disease. So...I do not think that the pain meds or the psych meds are the cause at all. I have the same problem with the problem peeing, and it only showed up after I was given RSDS.

Hi Rita and Reed,
It is always good to hear from you and letting us know how you are both doing. I also had the spasms, myoclonic jerks, electric jolts, They, too, were always when I was laying in bed nodding off to sleep. BAM a jolt of lighting thru my body and brain that would bring my head right off the pillow. Would scare me to death. Or reclining and relaxed to watch TV. Legs would start going spastic, moving up and down, constantly, arms too.
Dr. put me on Neurotin and had to go up to 3200 mg to get this under control. I don't have them anymore. Sleeping or lack therof is a common sympton to most RSD friends, I'm no sure why, But many a night, I can't get to sleep till 3 or 4 in the morning. I hate that. I even take Ambien CR 25 mg almost every night. Besides, vicodin 6 a day two at a time. something that really helps me is anti-anxiety drug called Lorazepam 2 mg. 3 times a day. It keeps my system calm. Music, scented candles, reading, meditating all keep me calm, my kitty too. She always wants to be in same room and likes to sleep with me. She is a maincoon, very affectionate and long soft fur.
Dr and I have switched from Neurotin to Lyrica and I feel much better. Neurotin drug me out-tired. Lyrica helped more with nerve pain, only take 300mg of Lyrica. Also went off of two anti-depressants and went on one-Cymbalta 60 mg. My depression, deep depression has completely gone away. I'm a little more emotional, cry some, but feel so much better. I was on double dose of wellbutrin xl and paxil cr.
So my jolts, jerks, where handled thru meds. They interest your sleep and that is NOT GOOD! right. You guys take care, Loretta

Thanks, Loretta,
Reed is on cymbalta, a low dose and his lyrica is also a fairly low dose. He was taking neurontin, and seems like the jerks got better while he was on it, but now they are getting worse. Maybe his dosage of lyrica isn't high enough. Reed hasn't really suffered depression, more anxiety of not know knowing what's next than anything. I'm guessing that the cymbalta may be helping to stop any depression before it starts. He's taking more lorcet plus now, since his surgery, because of course his back pain is really bad right now. He will be taking less of that once the surgery pain goes away.
We are most likely going in Monday or Tuesday to have his SCS programmed again, and he's looking forward to that. The trial really made a huge difference in his RSD pain.
Take care, and I hope everyone is having a good day!

First, welcome, and I'm sorry you had to meet us because of the "monster" as everyone calls it.
That's what I'm hoping isn't happening with Reed. I'm still hoping it's meds, because the problem is getting worse everyday. He drinks tons of fluids, and you'd think he would be peeing constantly. We're definitely going to bring this up to the doc when we go in, and also the jerking. It's disheartening that he's having these problems now, since he just got the SCS implant, and things were supposed to be getting better now!

Hey,

My name is Heather. I am 28 and I have full body, systemic RSD that started from a broken rt. foot and spread because of a SCS Trial.

I, too, had a hard time peeing at the beginning year of my disease due to the adjustment of all my medications. I started on Topamax, Fentanyl Patch, Roxicodone, Klonopin, Ultram, and Prozac. It was the narcotics that relaxed the bladder so much that I needed to sit there forever and run the water and strain myself. Sometimes I would sit there for 30 min...It was so frustrating.

As far as the spasms and jerks go, I have them throughout my entire body. My PM prescribed Baclofen 10mg - 2 @ bedtime. It helps me and my husband sleep. Otherwise the entire bed would be shaking and I would be kicking or punching him...

I hope this helps a little bit...This is just my story!!

Hope he feels better hun,
Heather

Hi Heather, and thanks. It does help to get more information..always!
Reed saw the PM doc yesterday, and unfortunately, one of his leads had already moved slightly, so he wasn't happy. Now, Reed is on very strict restrictions, and the doc wants him to have a sleep study to make sure he doesn't have restless leg syndrome. I feel like it's probably the RSD, or possibly meds causing the jerking, but we'll see.
His blood pressure was also very high, near stroke level. So, we are making an appointment with his GP to see about high bp meds.
The doc said the peeing problem could be med related, but could also be from constipation. Apparently, Reed is full . (I always knew he was full of poo)
So, he's on laxatives and then we'll see where that takes him and if the problem is still there. I agree that narcotics plays a role, because I remember after a car accident that ripped the muscles in my neck and shoulder, I was on narcotic pain meds and had a really hard time peeing also.
Thanks again for your input and I hope you're doing well.
Rita