ESRD § RLS § severe nerve Damage. Inherited § nerve damage

[ESRDRLS]

I can remember my first anxiety attack when I was 16. I was in my early 20’s when my friend and boyfriend brought me home and put me to bed. They later said they could hear me thrashing around in bed like I was running with my feet under the covers. I had rls attacks over the years. Years later my father admitted to me he had rls all his life. He came from a very poor background and at times had ton share a bed. He could not stay sill in bed and would get in trouble. He went into the AirForce and retired after 23 years. He said he never told me of his rls because he was made to feel it was all in his head and did not want to put it in mind. He did not know rls was very real til I found it on the internet. I feel mentally it helped in some way to know it was a big problem for a lot of people. He did a minimum of 100 push ups on the floor beside his bed trying to water himself out so he could sleep. I can only imagine how he felt when he could no longer physically do stuff to were himself out. I took care of him as he died in my arms from cops and at times I saw the signs of rls and I would rub his legs and try to ease him some. I thank god for the levels of pain meds I was able to give him worth the help of hospice. I have spinal cord damage and have nerve damage and can not walk a lot. When I could walk you would find me at midnight walking up and Down the street. Not the safest thing for a young woman to do by hearself really. Now I can’t walk so keeping the movement going is not an option for me. They have found the number one medication that works for the pain and rls is being little by little taken away for people that genuinely need it. (Opioids and Xanax). I have been on these meds for close to 20 years and am now in dialysis and pain drs are now scared to prescribe for people for people that really need these medications like myself. I have read a couple of people’s feelings in this forum and some talk about not wanting to live I get it but I keep on going cause I have a husband and a son that very much want me to live. I and trying to get on the kidney transplant list. I have a donor but because of the nerve damage I have has added a neurogenic bladder which causes such high pressures that urine literally shoots backwards and will kill any kidney put in right now so we are desperate to find a fix for this so I can accept a transplant then my hope is the kidney transplant will keep me going and if it gives out they will have the bio kidney profected and that will be an option. It has a lot more benefits. One being no anti rejection drugs and this amazing device is literally run by your heart pumping blood thru this device currently the size now smaller than a coffee cup. Meanwhile I am going to dialysis 3 times a week with no sleep and fighting to sit in my chair with severe dialysis.

[Hidden]

Hello. So sorry to hear of all that you’re going through!

Where are you located? The reason I ask is that we had a workshop led by a nurse whose focus is helping RLS patients on kidney dialysis. I’ll ask for help in getting his contact info. below, but the gist was about using mindfulness to help with RLS attacks while getting the dialysis treatments.

To the forum: I don’t remember his name or contact info., so can someone who attended that workshop help me out? Thank you!

[ESRDRLS in reply to Hidden]

Thank you so much. If your familiar I have primary and secondary rls. I am right outside San Antonio, TX.

[Hidden in reply to ESRDRLS]

You're welcome! Yes, I'm familiar with the different types. The guy I'm talking about is in the U.K., so getting his info. wouldn't help, but you can always try putting his theory into practice. Have you heard of mindfulness before?

Howdy fellow Texan! I'm originally from Houston!

[ESRDRLS in reply to Hidden]

Sorry I am trying to get used to things here so I missed your reply. No I have not heard of it but willing to try anything now. Can you give me more info please. Thank you so much for taking the time to write. Since I originally wrote I feel my situation has gotten substantially worse. I don’t sleep. I have severe rls in my feet and legs and honestly it can go up into my trunk area on top of that I have nerve damage from a botched surgery to untether a “tethered spinal cord”. I had a second surgery in New York by a specialist in adult tethered cords. The idea of this surgery was to wrap the bottom part of my cord to prevent more scar tissue from adhering to my cord thereby preventing more damage. I woke up from that surgery. Three days later I got a horrible headache when they finally did scans I had bacterial spinal miningitus. I spent 29 days in the hospital before released to go back to Texas. It has been years now and I am now on dialysis with ESRD and can not get a transplant due to a neurogenic bladder. Also caused by the tethered cord surgery. They are trying different procedures on my bladder to try and stop the reflux from the bladder into my kidneys. As long as I have the reflux any kidney I would get would just be shut down due to the reflux. I just had Botox shots into my bladder. I am told I had 300 shots in my bladder. Yes awake and even with numbing not a walk in the park. I have test to see if these shots help at all in now 3 weeks but the dr is less than optimistic. I can have a surgery to remove my bladder but am not guaranteed a fix. Meanwhile I have had rls as long as I can remember. I now have it so bad mixed with the nerve damage pain I am not sleeping for 3to 5 days at a time. I am on a scooter right now cause of knee probers and well a lot of problem walking so I can’t just keep walking it off. I am getting very depressed and don’t really know where to turn. This is the first time I have been able to sit long enough to write down this info. I was on Prozac for years. Yes I got off that. I was on requip and though that saved my life for a number of years. I am off that now. I am aware of all the over the counter and nausea meds that cause problems and avoid like the plague.. I am on 30 mg 2 times daily for pain management. I was on 40 twice a day with 10 mg nor of for breakthrough pain and I take 1 mg Xanax twice a day for anxiety. My pain dr is under the opioid scar and is cutting down on all prescriptions as far as opioids. So I feel I have gotten worse. I have a husband with severe lung problems and am blessed he is alive and home with me. He takes more care of me now physically as I handle all paperwork for both our medical and manage both our dr appts. I have an awesome son and I want to live to see him married and have kids. He is 26. Honestly if it was not for the love of my family I would not fight to live anymore.. I know that sounds bad. I am a Christian and I have seen many miracles so I know I can’t give up. Any help would be appreciated. This forum has already made a big diff to me just knowing y’all are all here and knowing I am not alone has helped to much but if I don’t catch a positive break soon I am afraid for myself if that makes since.

#tethered cord #nerve damage #rls #esrd

I have never done hashtags so I gave it a shot. If I did it wrote someone tell me how to better do it. I just wanted away to find things. Also my father who has now passed had rls all his life. He did not tell me until the last few years of my life. He was afraid it was something that if he told me it might put it in my head and actually cause me to have rls problems. He lived all his life in secret because he was convinced it was in his head and when he did reach out he was not taken serious. Unfortunately that is still going on now. A lot of medical people ask what is rls and when you say restless leg syn. They glaze over. My mother also recently passed but developed rls in the nursing home.

[Kaarina Administrator in reply to Hidden]

It was Patrick Burrows, Registered General Nurse who leads the community dialysis team at Manchester Royal Infirmary.

[Hidden in reply to Kaarina]

Thanks Kaarina!😀