jshabanian
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« on: March 20, 2012, 10:12:33 PM » |
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I started up hemo again last week and am experiencing extreme problems with restlessness and an inability to sit still. I am constantly moving and stretching my legs and arms. I feel as if I am jumping out of my skin. I suffer from this all day long but can deal with it by getting up and moving or exercising. When I am in the chair it gets so bad that I feel like screaming. Today I was crying. The staff is so nice and do what they can to help but we are all helpless in making this problem go away.
I have tried Requip, Clonazapam, Trazadone for restless legs and they didn't help and actually caused me to start with involuntary leg spasms, so I quit all of those meds.
My neph doesn't know what else to try and I don't know if I will be able to do this any longer. I will be picking up a prescription for Vicoden tomorrow to take before treatments. I hope this works and calms me down enough so I can relax during the session.
Today during hemo the nurse gave me Phenergan to make me sleepy. I got very drugged up from that but was still restless and uncomfortable. I have also tried Benedryl with limited sucess.
Any suggestions?
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Whamo
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« Reply #1 on: March 21, 2012, 04:52:03 AM » |
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You aren't getting enough exercise. I walk 3 miles a day, most of the time. I break it up into two 30 minute sessions on the treadmill at 3.0 MPH. I listen to music so I won't get bored.
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Cordelia
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« Reply #2 on: March 21, 2012, 05:08:55 AM » |
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I suggest excercise too. Helps keep the restlessness down during treatment for me. I listen to music during D too and find that helps keep my mind occupied too. I also read and watch a little TV.
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Diagnosed with Polycystic Kidney Disease at age 19. Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency. Began dialysis on Aug 15, 2010. Creatine @ time of dialysis: 27. I almost died. History of High Blood Pressure I have Neuropathy and Plantar Fasciitis in My Feet AV Fistula created in Nov. 2011, still buzzing well! Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April" Married 18 yrs, Mom to 3 kids to twin daughters (One that has PKD) and a high-functioning Autistic son
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Arcticat2000
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« Reply #3 on: March 21, 2012, 05:26:44 AM » |
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Hydrocodone. I know it's bad ju-ju for some, but its is the ONLY drug that works for me. i know exactly what you are going thru.
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ESRD diagnosed June 2003 Dialysis begins July 2003 Nocturnal Dialysis since Aug.2005-present 3 nights per week @ 7hrs per session Heart bypass surgery Nov.2007 w artificial valve
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jshabanian
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« Reply #4 on: March 21, 2012, 08:22:41 AM » |
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Thank you all for the great suggestions.
I agree that I am not getting enough exercise. I have been so tired lately because of lack of sleep but that is just making excuses. I will start exercising more today!
I am getting a prescription for Vicoden and hopefully it will work for me but if it doesn't I will ask for Hydrocodone.
Wish me luck on Thursday.
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Restorer
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« Reply #5 on: March 21, 2012, 07:30:57 PM » |
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Vicodin is hydrocodone, just so you know.
I had restlessness really bad the first few times I was on dialysis. The first night after emergency dialysis in the ICU, I could only relieve it by punching at the air really vigorously. Later on, it helped to do exercise in the morning before dialysis - for me, walking or jogging, and especially leg stretches. Metoprolol (which I'm on for blood pressure) helps to some degree.
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- Matt - wasabiflux.org- Dialysis Calculators3/2007 | Kidney failure diagnosed | | 5/2010 | In-center hemodialysis | 8/2008 | Peritoneal catheter placed | | 1/2012 | Upper arm fistula created | 9/2008 | Peritoneal catheter replaced | | 3/2012 | Started using fistula | 9/2008 | Began CAPD | | 4/2012 | Buttonholes created | 3/2009 | Switched to CCPD w/ Newton IQ cycler | | 4/2012 | HD catheter removed | 7/2009 | Switched to Liberty cycler | | 4/2018 | Transplanted at UCLA! |
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jshabanian
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« Reply #6 on: March 22, 2012, 03:12:59 AM » |
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OMG! The punching the air thing is so familiar. I punch the air, make grasping motions with my hands, pinch my thighs, shake my legs and arm. I jerk my legs out rapidly and do so many leg exercises that I should have the most toned legs in town.
Sometimes I feel like screaming out loud and I always feel like crying. I have vicoden for tomorrow so lets see how it works. Do you drive yourself home Artica 2000? I am not sure when to take it but thought I would try taking it 1/2 hour before treatment tomorrow. Hopefully it will have worn off so I can drive home afterward. If not I will just have to wait and sleep in the car until it does wear off.
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Stacy Without An E
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« Reply #7 on: March 22, 2012, 01:46:22 PM » |
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I take Vicodin sometimes when the needle pain is excruciating. It actually puts me in a better mood by the time treatment is over. You should be fine driving home as a majority of it gets flushed out of your system by the end of treatment. When I do take it, I usually take 1000mg. The only thing I would warn you about is long term use can really warp your stomach. My prescription usually lasts me 3 to 4 months, so I'm not taking it every treatment. I hope that works for you.
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Stacy Without An E
1st Kidney Transplant: May 1983 2nd Kidney Transplant: January 1996 3rd Kidney Transplant: Any day now.
The Adventures of Stacy Without An E stacywithoutane.blogspot.com
Dialysis. Two needles. One machine. No compassion.
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gothiclovemonkey
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« Reply #8 on: March 22, 2012, 07:06:26 PM » |
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My issues with that are the same! It is soooo terrible i start crying and sometimes i DO scream. PHENYGREN MAKES IT WORSE!!!! So can benydryl!!! DONT TAKE THEM!
My doctor put me on something for parkinsons disease to help with the RLS, its called carbadopa-levadopa, but id read up and make sure that you want to risk the side effects, they scared the crap out of me but i cant handle the RLS, so im risking it!
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"Imagine how important death must be to have a prerequisite such as life" Unknown HemoDialysis since 2007 TX listed 8/1/11 inactive LISTED ACTIVE! 11/14/11 !!!
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SteveK87
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« Reply #9 on: March 22, 2012, 07:12:43 PM » |
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My wife swears by Vicodin..something with opiates really seems to help. Another alternative to try is Tramadol..takes a little while longer to kick in than Vicodin but works great.
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boswife
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« Reply #10 on: March 22, 2012, 08:10:26 PM » |
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oh my gosh, the other day hubby had to get done at the center and so i suggested he try the benydryl... OH NO!! he got so wound up it freeked him out!! I had always heard how it makes ya sleep. Gotta watch out for everything huh...
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im a california wife and cargiver to my hubby He started dialysis April 09 We thank God for every day we are blessed to have together. november 2010, patiently (ha!) waiting our turn for NxStage training January 14,2011 home with NxStage
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Restorer
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« Reply #11 on: March 22, 2012, 08:59:57 PM » |
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I forgot to mention that caffeine makes it much worse for me too. Sometimes I'm very restless even when I'm not at dialysis, especially in the muscles at the tops of my thighs. When I've had Vicodin after surgeries, that does help me relax. Benadryl makes me sleepy, but sometimes it makes my legs more restless, and all I can do to fix it is lie down and curl up. And it's always my left leg! I hope the Vicodin works for you.
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- Matt - wasabiflux.org- Dialysis Calculators3/2007 | Kidney failure diagnosed | | 5/2010 | In-center hemodialysis | 8/2008 | Peritoneal catheter placed | | 1/2012 | Upper arm fistula created | 9/2008 | Peritoneal catheter replaced | | 3/2012 | Started using fistula | 9/2008 | Began CAPD | | 4/2012 | Buttonholes created | 3/2009 | Switched to CCPD w/ Newton IQ cycler | | 4/2012 | HD catheter removed | 7/2009 | Switched to Liberty cycler | | 4/2018 | Transplanted at UCLA! |
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mamagemini
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« Reply #12 on: March 23, 2012, 11:42:34 AM » |
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I know this may sound off the cuff but what about Marijuana? The Cancer patients use it for nerves and nausea. Years ago I had sever pain in an area you DO NOT want pain in...and I took half a Hydrocodone and a few puffs of a pipe. Took the edge off faster and all I could feel was the pounding but no pain. nly lasted a couple of hours but it was so worth it. Just a thought...don't shoot me!!!
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FSGS/Nephrotic syndrome 2005 AV Fistula placed right arm inside elbow 4/2012 Started HD 9/7/2012 Started PD Oct 2015 Parathyroid removed 6/2019 Cellulitis in Fistula 8/2019 RT arm Fistula removed 9/2019
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Riverwhispering
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« Reply #13 on: March 23, 2012, 02:27:37 PM » |
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It's only one step from the Jungle to the Zoo
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big777bill
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« Reply #14 on: March 23, 2012, 03:27:24 PM » |
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Whatever works mamagemini. There is no sense in being uncomfortable if you can find a way to relieve it. The pot laws are antiquated. If you can take something natural instead of a chemical I see no harm in it. Definitely not deserving of jail time or even an arrest. IMHO
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liver transplant 3/22/2005 CKD 2008 fistula 11/17/2011 catheter 2/07/2012 started hemo-dialysis in center 2/07/2012 fistula transposition 3/08/2012 NxStage at home 3/29/2012 Using fistula at home 6/25/2012 Using new NxStage S High-Flow cycler 3/04/2014
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jshabanian
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« Reply #15 on: March 23, 2012, 08:59:59 PM » |
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I tried the hydrocodone and it worked great. I was relaxed and able to sit still and even doze off during the treatment. I will definitely use every time.
What some of you have said about benedryl and phenergan makes sense after my experience. My symptoms became MUCH worse after the nurse gave me the Phernergan. I had Benedryl in my system at the same time. Whew, what a chemical nightmare.
I have often thought about smoking some pot to relieve some of the symptoms I have been having with restless legs etc. I am afraid it will be detected in my blood and I will be disqualified for the transplant list if I do.
I agree that the laws concerning pot are completely outdated and ridiculous. I have never used pot before but read so much about how it benefits cancer patients and those suffering from chronic pain. We really need to get out the dark ages and legalize this plant.
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Farmzoid
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« Reply #16 on: March 27, 2012, 03:22:29 PM » |
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I know how you feel and it is not fun. I used to stay up all night before a session just so I could sleep through most of the chair time as possible. I could put my legs down for a little bit but not too often.
I finally got some relief by going to PD. Only takes 15-20 minutes to do an exchange and I can stand up and move around in place if I want to.
Good Luck in finding a solution.
Joe
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Ken Shelmerdine
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« Reply #17 on: March 29, 2012, 04:32:11 AM » |
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By the time I have done 2 hours I am stir crazy. I have found that the best thing for me is to sit on the end of the chair with my feet on the floor and the beside table in front of me just as you would sit at a table.
I read the newspaper or a book or do crosswords. I find that after about 2 hours doing that I do get a bit restless but not as quickly as when I am lying down. I then do get back on the chair to Lay down and stay comfortable enough to have a bit of a nap. Eventually I get restless again so I repeat the procedure of sitting on the end of the bed where I am once more comfortable.
My fistula will take about 350 pump speed as long as I don't move the arm so I run at 300 instead so that when I move between these two positions the pressure doesn't build to alarm point when I move my arm. It doesn't seem to effect my clearance running at the lower pump speed. This is how I deal with it, hope it may help.
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Ken
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Whamo
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« Reply #18 on: March 29, 2012, 04:39:15 AM » |
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gothiclovemonkey
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« Reply #20 on: March 29, 2012, 04:32:42 PM » |
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sheesh im lucky if i get it once a month !!! that is a good way to get rid of energy i find walking helps the leg issues i have, but sometimes if i over do it, it actually makes it worse... odd huh?
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"Imagine how important death must be to have a prerequisite such as life" Unknown HemoDialysis since 2007 TX listed 8/1/11 inactive LISTED ACTIVE! 11/14/11 !!!
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