Solutions for restless leg symptoms

silverdolphin73

RESTLESS LEG SYNDROME (rls) CAUSES AND SOLUTIONS. I am a 73 y.o.retired RN with recently diagnosed rls- (this is my first posting-August 2017). I am trying to find causes for my rls and believe that part of the problem is connected to other medical problems and the drugs prescribed for them. In the past 2 years I have gotten off many Rx drugs thru switching to a plant -based diet-mostly by following Joel Furhman's Nutritarian diet. So far so good.From my research I have learned several things-most commonly not enough is known re effective rls treatment, many doctors don't seem to realize how life-changing rls can be, and at times don't take the pain and sleeplessness seriously enough. So my solution is to do my own research and share my info with my doctors so we can work together on solutions. I believe patients are partners with their physicians regarding treatment and not just passive recipients of medical advice to be followed blindly.My major interest at this time is the possible connection between rls and SIBO ( small intestine bacterial overgrowth). My other discovery is that I believe the blood thinner Coumadin is somehow involved with my rls. Not much info is available on this subject except to say the two are probably not connected. I believe they are. Can you tell I'm not a fan of 'Big Pharma'? Certainly Rx (prescription) drugs have a place in good health care but I want to try other solutions before adding a new prescription. Love to hear from others who have blazed this trail before me. Thanks, silverdolphin73.

[Hidden]

Hello! I love your philosophy; we need more doctors like you!!

There are 2 kinds of RLS: primary (inherited) and secondary (RLS as a result of other conditions). Mine is secondary, having come about after augmenting on the medicine Pramipexole.

If you click on my user name you can check out my posts on how I deal with this hellish nightmare, with both practical and psychological methods.

In addition to RLS I am well into a diagnosis of depression, so I'm pretty well-versed in the psychological department (although a lot of this psych. stuff also comes from not sleeping due to RLS!). My most recent thing is that I've started appointments with a pscyhomotor pysiotherapist. My post entitled "relaxation techiques" describes what that kind of PT is and gives practical exercises.

It really is a vicious cycle we're in!

Anyway...I'm here to help. Everybody here is SO helpful.

Take care,

[Hidden in reply to Hidden]

Jess3648. You're my first reply and, in spite of all my research you've given me something to think about. I was diagnosed with and placed on a c-pap machine in 2011. At the time nothing was said about PLMD. I'm seeing my sleep doctor in October and will discuss this possibility with him. On my last visit he mentioned having my ferritin level checked as a possible cause for the rls. I did and it came back low normal. Unfortunately many times when lab work is within the normal range results are not considered a problem. However, my research turned up info that oftentimes patients with rls need their ferritin level to be between 80-100 (mine was 60) to be effective in helping symptoms. So I am trying to raise mine by natural means; unsulphured blackstrap molasses, liver once a week-which I hate but just consider it a medicine- as I don't want to add iron supplements to my meds. As you say, more medicine-more problems and confusion about which ones are problematic. So thank you for this insight. I am also pursuing the SIBO and IBS(irritable bowel symptoms) as gastrointestinal problems are very common in the US (too many opportunities to eat the wrong foods here). I am also drinking some Schwepps tonic water before bed which seems to help some. Quinine is difficult to get here now except in tonic water. One thing I didn't want you to be confused about is that I am a retired registered nurse not a doctor. I do have physicians that work with me and they are worth their weight in gold. If I'm referred to a doctor who I feel is not open to my philosophy I do not involve him in my care. I try to be prepared for Dr. visits and then have a discussion. Often they allow me to try my non-medication ways first. I'm also going to look into the depression aspect you mentioned as the pain at night makes me anxious. I take a small dose of Xanax for this and it helps me cope with the pain and scariness which comes to us all in the middle of the night. Don't mean to be so lengthy but I'm excited about being a part of this blog and getting other ideas. Hope what you are trying is working for you; looking forward to getting your updates. Thanks again. silverdolphin73

[Hidden in reply to Hidden]

I'm glad I was able to help!

I've heard of Xanax, but don't know anything about it. I'm glad it helps you!

Wow! Plant-base diet! That can only help to raise your levels, so I hope you have success with it!

I couldn't eat liver even if I tried (it looks too bad), so I applaud your success! 😀 I do like spinach, though, so I should start eating that (my ferritin levels are also "low" at 57). I'm currently taking amino iron every morning, but that alone is probably not enough to raise my levels.

Take care,

[Pippins2]

Welcome to the group

[Joolsg]

Hi silverdolphin,

Welcome. You are preaching to the choir for a lot of us on here. Totally agree that we need to do our own research ( as we know, most doctors know nothing about RLS or how to treat it).

Sadly, a lot of us have no choice but to use heavy drugs as nothing else stops the RLS. It's wonderful to hear of all the diets and alternative meds that work for some people- that's what makes this site so great.

[Hidden in reply to Joolsg]

I agree; it's up to us to find solutions. Hopefully soon Drs will begin to take this disease more seriously. It's difficult to live with chronic pain, especially when at times our problems are dismissed by the medical establishments. There is a lot of information , research, and ideas out there but many doctors don't seem interested. So I guess right now it's up to us to find our solutions.

[Matrix]

That's a great idea in principle but some Drs don't want to partner with you because some feel superior and think we know nothing when in fact we are expert on our conditions . Xx

[Hidden in reply to Matrix]

You're right. I was always told as a nurse; if you really want to educate yourself about a disease ask the patients who have it.

[Matrix in reply to Hidden]

Well it's something I have observed I have asked the dr about something and he goes on his computer .We need to remember the are general practioners ,so they know a bit about everything ,my hub is a modern matron in mental health and he has drs coming in for three months and that's their general knowledge unless they go onto specialise .

If I ruled the world I would decree that all drs had a three month stint of fibro,RLS ,MSand all the other ones that are horrible because mostly they don't uunderstand. Take care xx😇

[Bajatom]

Hi SilverDolphin73,

I'm 80 and have had RLS for at least 50 years. Years ago when I learned that the risk of stroke and heart attack is 4 times greater for those with RLS, I also switched to a plant based whole food eating lifestyle to try to reduce that risk. I still have RLS but it is far less severe. What did surprise me was how much better I felt, minor arthritis disappeared, cholesterol dropped to 130, blood pressure normal, and enough energy to bike, hike, and stay active. I found a doctor who is willing to learn and try to find the least pharmaceutical way to control RLS. She is also promotes plant-based eating.

[Hidden in reply to Bajatom]

Hello Bajatom. I really identify with you. I was recently diagnosed and along with my plant based eating in the past 2 years I've noticed many problems disappearing-lost 70 pounds, got off insulin, BP medicine, less aches and pains. Now this. I ha ve afib and last year elected to have a pacemaker and an AV node ablation which enabled me to stop all cardiac meds which were filled with side effects. Glad I did; has made a big difference in day to day comfort. I began my plant-based eating based on Dr Joel Fuhrman's Nutritarian diet after seeing him on public television. You're right. Many symptoms you weren't even aware of resolved. I recently reread some of his books and, to help my rls I'm in the process of doing several things-at least for a while to see if they help; no gluten, no dairy, no nightshades(white potatoes, tomatoes, eggplant, and peppers. Rather strict but I'd rather get rid of my leg pain.I'm beginning to believe many of our problems are related to todays food-how it's grown, raised, etc. Boy, I'm om my soapbox-sorry. Look forward to hearing how you are managing your plant-based eating. I agree that there isn't much pharmaceutical help out there for us. I recently moved to senior living (in Atlanta) and am amazed at how many people here suffer from rls. It's sad. burmag (ps. I'm 73)

[Hidden]

I wish I could find some reason for having this hideous affliction. As I have been tortured with RLS since childhood there are no meds to blame and no other medical problems. RLS is the one and only medical problem that I have had to endure.

[Matrix in reply to Hidden]

Same here with both restless legs and fibro since childhood and it's been a lot to cope with and in young adulthood many more to cope with .My father had it one of my daughters has it it's a nightmare .x😇

[Squeakychalk in reply to Hidden]

I keep my feet in a bowl of really chilly water .It helps me

[Hidden]

If you have had RLS since childhood then that points to one of your parents to having it, its called Primary RLS, genetic, inherited from a parent. I have Primary RLS, as do 70% of people. I have no other medical conditions take no other meds except for RLS.

[Matrix in reply to Hidden]

Elisse thank you for posting that I didn't know that primary RLS I take 19 different prescriptions a month so it's a lot and I can't take antidepressants as they put the RLS off the scale as in I want to cut my limbs ( I won't because that's ridiculous) and a lot of the time I have all over body RLS and yes it is a thing and it's miserable .xx😇