I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ken Shelmerdine on May 30, 2008, 08:30:42 AM

Title: Restlessness
Post by: Ken Shelmerdine on May 30, 2008, 08:30:42 AM
Just lateley there have been occasions  when I feel physically agitated as if my entire nervous system is strung out. It happens when I sit down and try to relax, I find I get so fidgety that it becomes impossible to concentrate on reading a book or newspaper and it only goes if I start doing something physically active. Is this caused by high blood urea levels? 
Title: Re: Restlessness
Post by: rose1999 on May 30, 2008, 08:41:11 AM
Sorry I can't answer that Ken, but just wanted to say it's good to see you posting, haven't spotted you about the boards lately.  Hope you and Rita are both OK?
Title: Re: Restlessness
Post by: Romona on May 30, 2008, 09:10:44 AM
Hi Ken. I'm not sure, but it might have something to do with it. I just remember my doctor telling me to watch out for confusion as levels went up.
Miss you buddy! :grouphug;
Title: Re: Restlessness
Post by: flip on May 30, 2008, 09:55:19 AM
Yes, it is one of the common symptoms of uremia.
Title: Re: Restlessness
Post by: paris on May 30, 2008, 10:02:56 AM
Ken, you have been greatly missed!  The kingdom isn't complete without Sir Ken.   Sorry you are having tough time.  I don't have any answers, either.  How is everything else doing?  And how is Rita?    It made my day reading your post! :cuddle;
Title: Re: Restlessness
Post by: KICKSTART on May 30, 2008, 10:10:22 AM
Hi Ken ..yup i get this too , i tend to call it 'restless' body syndrome ! Its exactly like you get in your legs but all over your body , its like you feel agitated or excited isnt it ?
Title: Re: Restlessness
Post by: paddbear0000 on May 30, 2008, 10:32:02 AM
I've been having the problem in my legs more and more recently. It's pretty much when I'm lying down or sitting. Lately tho, it's happening in my arms too. I can be dead tired, to the point where my eyes are practically rolling back in to my head, but I've got to get up and keep moving around. I've noticed that taking benadryl seems to make it worse!  ???
Title: Re: Restlessness
Post by: Earlinda on May 30, 2008, 11:31:55 AM
Hi Ken ..yup i get this too , i tend to call it 'restless' body syndrome ! Its exactly like you get in your legs but all over your body , its like you feel agitated or excited isnt it ?

What a good way to describe this horrible feeling!!  I think you hit the nail right on the head with the description Kickstart!  I will have to remember this to tell my doctor how I feel sometimes.

Earlinda
Title: Re: Restlessness
Post by: Sluff on May 30, 2008, 11:36:34 AM
Glad to see you Sir Ken I have been trying to run the kingdom but I have failed miserably. Hope you feel better soon with the restless agitation issue.
Title: Re: Restlessness
Post by: Sunny on May 30, 2008, 02:16:40 PM
Yep. I have this too. I think I'll start calling it "restless body syndrome" too, a very apt description.
I also seem to have a constant underlying slight tremor throughout my body, noticeable when I hold my hands still.
Wonder if this is related? I hope you find a solution soon, or at least a way to feel better.
Title: Re: Restlessness
Post by: paris on May 30, 2008, 04:23:05 PM
Sunny, my neph checks my hands for tremor ever visit. I have had slight tremors for two years now.  He tells me it is another sign of kidney failure.   
Title: Re: Restlessness
Post by: Sunny on May 30, 2008, 05:21:12 PM
Thank you Paris,
just another thing my renal doctor has failed to inform me about (the tremors).
I'm starting to think the doctors don't tell me about all of these things that keep coming up related to
kidney disease because they feel I can't handle the truth. Restless body syndrome being another thing
I haven't been told about. It's like that Jack Nicholson/Tom Cruise movie where Nicholson says,
"You can't handle the truth."
Title: Re: Restlessness
Post by: Robby712 on May 31, 2008, 02:52:59 PM
Sounds like restless body/leg syndrome.  The most commonly associated medical condition is iron deficiency.

I had been on iron once a month since I started dialysis but was temporarily taken off when I started receiving heavy doses of antibiotics for another issue.  Well they forgot to put me back on when the antibiotics stopped and I started noticing the same symptoms you mentioned every time I would sit/lay down at the end of the night.  I asked about the Iron...got one dose...and things went back to normal.

If your not getting iron in center, I suggest a renal multi-vitamen with an iron supplement such as the one found here:  http://www.dialyvite.net/default.asp?edid=60

Of course, as always check with your doc's before taking a supplement suggested by a high school ceramics teacher. :)
Title: Re: Restlessness
Post by: paddbear0000 on May 31, 2008, 04:18:10 PM
I take 3 times the recommended daily dose of iron every day because of a problem I have maintaining my iron levels, and it doesn't help me. Taking the 3 pills a day, my levels are where they should be too (actually, on the high side of normal).
Title: Re: Restlessness
Post by: Romona on May 31, 2008, 08:59:50 PM
Do they check your B levels. My sleep specialist told me that irons can be normal, but the B's can be off. I was put on Folic Acid and B vitamins and it helped.
Title: Re: Restlessness
Post by: Ken Shelmerdine on June 01, 2008, 10:06:22 AM
Sounds like restless body/leg syndrome.  The most commonly associated medical condition is iron deficiency.

I had been on iron once a month since I started dialysis but was temporarily taken off when I started receiving heavy doses of antibiotics for another issue.  Well they forgot to put me back on when the antibiotics stopped and I started noticing the same symptoms you mentioned every time I would sit/lay down at the end of the night.  I asked about the Iron...got one dose...and things went back to normal.

If your not getting iron in center, I suggest a renal multi-vitamen with an iron supplement such as the one found here:  http://www.dialyvite.net/default.asp?edid=60

Of course, as always check with your doc's before taking a supplement suggested by a high school ceramics teacher. :)

Robby I'm going to ask my home sister to have a look at my iron levels. Is this a constituent if haemoglobin because my my haemoglobin is thankfully up there at 14.5 or can you have normal haemoglobin but deficient iron levels? If it's due to uremia then I don't know what I can to because they tell me at clinic that I am getting a more than adequate PD dialysis.
Title: Re: Restlessness
Post by: Ken Shelmerdine on June 01, 2008, 10:33:22 AM
Paris Sluff Romona Rose and all at IHD I've missed you too. I normally post when I am at work at the national examinations board (AQA) for whom I work. Because we are in the middle of GCSE and A level school exams at the moment I just don't get any time to post and because I am on a computer screen all day I don't usually feel like switching my computer on when I get home. Come the end of July it all calms down and I'll be back posting more often.

Another distraction has been the process of getting Rita's mother into a nursing home. She is 85 and has vascular dementia and for the last twelve months has not really been capable of looking after herself. It has been quite a strain for the family but at last she is now in a beautiful nursing home getting the 24 hour care that she needs

As for me, well I think I said in another post that I have the all clear from prostate cancer but I still have some after affects from treatment which involves peeing about 14 times a day! and have been told that this could last up to 12 months as the prostate stays swollen from the treatment for that time. :grouphug;
Title: Re: Restlessness
Post by: paris on June 01, 2008, 03:29:55 PM
Yes, your hemoglobin can be in the normal range and your iron stores can be low. Two different types of anemia.  I get iron infusions when my iron levels go down.

Ken,I am sorry about Rita's mother.  We went through the same thing with my mother and it was very hard. It is heartbreaking to see an independent, successful woman become a shell of her former self. I was the only one in the family she always recognized. Others tried to "make" her remember things. I would sit quietly and share magazines or quilting books with her. Things from her past that she could still relate to. Please give Rita my regards and best wishes.   
Title: Re: Restlessness
Post by: 7piglets on June 09, 2008, 01:40:23 AM
I am so glad you posted...I get it real bad in my right leg (in fact it is 4:30am right now I am exhausted but cant sleep because of it)
My blood levels are fine and my iron is fine so I will ask dr about checking my B levels..
Has there been anything that can help with the relief?? I havent started dialysis yet I start tomorrow will that help or make it worse ..thanks again
Title: Re: Restlessness
Post by: KICKSTART on June 09, 2008, 03:20:55 AM
I take a tablet called 'Co-beneldopa' (its used alot for Parkinsons) and it works 98% of the time for my restless legs and ive been on it for 3 years or so now.
Title: Re: Restlessness
Post by: 7piglets on June 11, 2008, 06:32:28 PM
Kickstart is that a prescription...? I asked today at dialysis and they said it is probably something else causing it because that it not something they hear of ..but they did say my iron is now low ..
Title: Re: Restlessness
Post by: KICKSTART on June 12, 2008, 01:33:06 PM
7piglets ..yes its on a script but im in the UK so maybe thats why no one knows about it ? All i can tell you is i take this tablet every night about an hour before bed and it really does calm my legs ! Im not sure but hasnt there been a thread on urea ? which i thought caused restless legs ?
Title: Re: Restlessness
Post by: Sunny on June 12, 2008, 04:00:13 PM
Yes, search "Uremic neuropathy", or "Uremia". This issue has come up a few times on this message board.Toxin build-up can cause restless leg syndrome along with
neuralgia, i.e., the "pins and needles" feelings in the feet. Kickstart, my father takes that medication for Parkinson's Disease by prescription so it is available in the U.S.