Questions
 

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. :eek:
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! :grouphug:

Myoclonic Jerks
 

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.

the problem 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! :hug:

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! :(

NO Worries, Just Annoying!!
 

:(

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:eek:...

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

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) :D
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

Thanks for the update Rita. I hope Reed will feel better soon.
You have both been through so much.

Keep us posted...:grouphug:

Rita, i'm sorry to hear that Reed isn't feeling too well at the moment :hug:. I hope and pray that the sleep study comes back normal and that there is nothing else for you to worry about.

I also hope that Reed's peeing problem settles down soon - I am the total oposit (sp?), it seems now I have RSD, I am forever at the toilet!!

I am keeping you both in my thoughts and hope that things get better for you soon - please keep us updated when you can.

Love, Alison

Hi Rita and Reed,

RSD causes a lot of things to happen. It is an automic (spelling) disorder-which means
it affects the involuntary organs. The sympathetic nervous system affects high blood pressure- I had never had high blood pressure before either. Para Sympathetic Nervous system-low blood pressure. So we can have dramatic drops, also. I'm on two high blood pressure meds. Pain meds do cause constipation- I have a high fiber diet and take natural pills to help. I don't know about the bladder. But it comes under the automic organs, heart, lungs, I would ask your Dr. about that. But I thinkI'm going to have to go off the Lyrica, having lungs issues and I've read several on this forum are affected by Lyrica on this organ. Just to find a Dr. that understands all of this interconnection is a miracle. Take care and let us know how you are> I see my Dr. Monday. Loretta

Hi Rita...
 

Thanks for the concern hun...I am doing okay...Just trying to hang in there. Happy Turkey Day! Hope Reed is doin OK...Give him my best.

I am sure the spasms are RSD related, but I am not a doctor. My whole body jerks so bad that I keep my husband awake...:p

A great script for that is Baclofen..Ask his PM for that...It's the best for RSD spasms. Hope this helps sweetie!

Heather:wink:

Hi Nopainever,

I also had that problem with urination but it just seemed to go away. At that time I was doing 5 day ketamine procedures with boosters and I think that had alot to do with it. Right now and for the past year I haven't had any problems and my last ketamine booster was January 08.
Thanks for the post. I never heard of anyone else having this problem.

Thanks again,

Gabbycakes:)

Thanks Heather and Loretta,
Reed is doing better. We asked his PM doc about baclofen and he didn't seem really receptive. As a matter of fact, he didn't seem like he wanted to talk about much of anything. I'm hoping that he was just having a bad day, and that he isn't going to turn Reed out now that he has had his SCS and there aren't any more procedures to be done. I'm sure I'm just being paranoid.
Hope everyone had a fantastic Thanksgiving, I know I ate way too much! Hugs to you all!!

There is always more to be done...
 

Don't give up Rita...Hang in there! SCS is not the END for sure. Sounds like your PM is at the end. Maybe you need to find someone new. I know that is exhausting, but there are compasionate doctor's out there. I had to move back from Las Vegas to Orange County to get my RSD back on track. But it was worth it.

Good Luck. Keep us Posted!

Heather

Gabby..
 

Mine ended too and I don't remember why, but I think it was my body adjusting to the Fentanyl Patch....

Thanks for responding...:hug:

[Thanks Heather,

I remember mine was getting so bad I had to push on my stomach at one point and then slowing it also just went away. Very weird. Thanks for responding.

Gabbycakes.




QUOTE=nopainever;415875]Mine ended too and I don't remember why, but I think it was my body adjusting to the Fentanyl Patch....

Thanks for responding...:hug:[/QUOTE]

Same..
 

Hi there
I also have problems with urination but I think they are a direct result of RSD symptom edema.. when my lower body swells up I can't seem to go without alot of pushing and similar dificulty as you all described.. but after the swelling goes down the next day or after elevating lord help me if I sneeze cause it's like my muscle there is dysfunctional and allows far too much leakage post swelling for my liking.

I have missed you guys, moved to another city, I am expecting a grandbaby any day now.. other than that things are the same for me.

hugs all,
Sandra

Sandel...
 

Hi Hi Hi Sandra! Congrats on the grandbaby! I haven't been on in awhile either, but I am back.

Glad to see you Woman!:D Missed you too!

My Baby Turns 1 Tomorrow!!! YaY!!! :Birthday:

Love ya,
Heather

Hi I have trouble with the peeing but the opposite
 

I will pee for a half an hour, it just keeps coming. No incontinence but im in there a half hour. I just found out i have mulitple herniated discs in the cervical spine and several in the thoracic spine- I read this can cause my problem. I already have rsd in the pelvis so im nervous about my appt on the MRI- I have no details yet the doctor emailed me about all the herniated discs saying it was highly unusal. Im jsut praying its nothing serious. Appt is in one weekkk. Any one else have multiple thoracic spine disc herniaations?
Thanks, CZ