Restless legs - linked to heart disease?

Brain and nerves
1

Hello smile some background on me quickly. I'm 29 and developed ME (CFS) around 4 years ago. I was bed ridden for a year or so but battled through and seemed to make a recovery to the point of being able to live a relatively 'normal' life. However, around a year ago began the nightmare that is restless legs 😩

I have suffered with RLS my whole life but only very sporadically. A year ago I began to wake up most nights and now it has increased to the point of being absolutely unbearable. I manage to grab around 4/5 of unrefreshing sleep each night.

My main reason for starting this discussion is to ask everyone's opinion on the heart disease link. As most RLS sufferers I am up all night googling for answers and have come across several articles that link RLS with heart issues. This has terrified me, as I've always thought RLS must be a sign of a deeper issue.

When I wake up in the night with RLS I also feel thirsty and have a tight chest. I also get s feeling of 'rushing' almost asthouhg I have been on drugs even though I am totally exhausted and just want to sleep! This makes me anxious which doesn't help matters. Does anyone else experience this?

Has anyone with RLS been tested and found that they do have a heart condition?

Does anyone know someone with a heart condition who suffers severe restless legs?

Should I ask the doctor for a scan on my heart? What if he says no because he thinks I am being a total hypercondriact? (He has prescribed me anti-depressants and anti-anxiety in the past which I refuse to take, as I am not depressed!)

Any help or advice would be much appreciated as the has completely taken me over and I'm losing hope. I'm 29 and I feel I have no quality of life. I pray to God every night that I am able to sleep through, but I never do.

I would also be very interested to hear what you all believe is the cause of RLS, if a simple iron or magnesium deficiency had been ruled out, the main theories seem to be either; inflammation (caused by toxins from poor diet / chemical products) or a neurological disorder, where the Vagus nerve malfunctions and doesn't send out the right signals to release the correct combination of chemicals (such as dopamine). Interestingly, the latter theory worryingly would back up the links with heart problems as the Vagus nerve is also responsible for sending signals to the heart and other vital organs.

One last question, has anyone else noticed a link between ME / CFS and RLS?

Thank you smile x

2

Normally a dopamine agonist such as ropinirole works. Small dosage Methadone 10g certainly will. Dont use depression drugs that are dopamine antagonists. They worsen RLS. Avoid alcohol and caffeine.

Hope this helps

3

You say "a simple iron ... deficiency had been ruled out", may one ask how?

Iron is needed to produce dopamine and there is a theory, quite a strong theory (IMHO), that mitochondria take up iron from cells thus reducing dopamine production. This is thought to occur in the brain and a few other organs, notably the heart.

If that's you on the photo, you look quite fit – are you sure you're taking enough iron in level with that fitness? Have you had your blood iron levels checked?

There's a strong link between RLS and fibromyalgia, I believe – not so sure about ME, though some of the symptoms of ME and FM are said to be similar.

4

I see mitochondrial dysfunction is much linked to ME/CFS.

5

Thank you Ron,

I have avoided acohol and caffeine for several years now, and chose to clean up my diet significantly in order to recover from the ME.

I have tried to solve my restless legs the natural way, without drugs.. But have sadly been failing.

Currently I,

Exercise regularly but not too aggressively (yoga & light jogs)

Take Iron and magnesium supplements

Eat only natural organic foods, and only white meat or fish.

No processed food, keep sugar and salt low.

Avoid alcohol caffeine smoking etc

Drink only bottled water

Avoid parabends, I don't use deodorant and only use natural organic products on my body

Unfortunately it looks as though the route of trying drugs is now my only option. Ropinirole seems to have worked for a lot of people, another that came highly recommend was Miriplex (pramiplexol) - have you tried this?

Thank you once again for your advice.

6

Hi Robert,

Thank you for your insight. I have never heard of Mitacondria, are you saying that you believe that this may be the cause of restless legs for a lot of people?

Yes that is me in the picture although it is a couple of years old. I used to be very much into health and fitness but unfortunately my conditions won't allow me to train how I used to. I have actually gained around 20lbs since restless legs started occurring (due to middle of the night eating and generally feeling sorry for myself / craving sweet things).

Sorry in answer to your question I had my iron levels checked and they appear normal. I also take iron and magnesium supplements every day.

How might I go about being tested for Mitachondria? Would dopamine antagonists help if that were to be the cause of my restless legs?

Thank you so much for your help. I'm really trying to get my head around everything as the GP doesn't seem to care and I feel as though my life is slipping away from me. Every day I feel worse!

7

Pramiplexol is similar. The latest is neupro which is a patch. Lyrica is worth trying first or Horizant if you can get it. Lyrica did nothing for me.

8

Your GP probably simply doesn't want to blow it up into anything more than it is, and if you start taking drugs you may have augmentation to consider.

Yes, one strong possibility sems to be that mitachondria are involved.

Eating, particulalrly carbohydrates, raises dopamine level, possibly (also) has an effect on iron, so that's why that helps sometimes, but not always, so then you've consumed more calories than you need and got nowhere.

I don't think you can have mitochondria tested, and their role in all this has only just started to be investigated. Since your post, I've been reading how mitochondria depend a lot on carnitine and how carnitine is low in ME/CFS sufferers and so on. I think I may well consider getting and taking carnitine in some form, though I've read both negative and positive results about it among RLS sufferers. It looks as though where people have stopped eating red meat and increased exercise may be something that needs researching. It seems to me it may be that we are expecting too much from our mitochondria, especially when we cut out rich iron sources, like red meat, and then drive our bodies hard physicaly. Maybe a too low level of iron can do irreversible damage, and that low level of iron is stored or used in a way that is not detected by current blood tests, and maybe medics are being over cautious about how much iron (and other nutrients) we need, especially when we are physically active. However, that too much iron is toxic to mitochondria is probably already quite well proved.

9

Hi

I haven't read of any connection between RLS and heart conditions.   I have had RLS for 55 years and heart is healthy.  But thats a meaninglessly small sample.

However there is said to be a relationship between poor sleep and heart attacks and strokes.

RLS appears to be a very variable condition and affects people in many different ways.   Find a doctor who cares, your doctor thinks you are a whinger because he hasn't tried living with a couple of hours of broken sleep.    In general if they haven't got RLS they can't believe how much value it takes from your life.  

With the new doctor try the standard things like Ropinrole which gives some people total relief for for a long time and perhaps for ever.

Try Robert T's type of magnesium and iron.

In my own case I am eating according to the Monash University FODMAP diet and it works most of the time even though its designed for IBS.    Unfortunately I can't seem to get past the exclusion diet which is supposed to only be used for 6 to 12 weeks.     This is easy to try and I dont think there is any reason why you would not try the iron and magnesium  at the same time as the FODMAP

My daughter applies a magnesium cream when ever she feels the RLS starting and it works after about 5 minutes for the whole night.

I still get mild RLS and when it wakes me I can usually get relief by walking around for 15 minutes and going back to bed.   I used to walk around until dawn so I'm a lot better off now.

Good luck with your search for a sensible doctor.  Wouldn't it be good if we could set up a list of doctors and specialists who have a good understanding of, or at least a appreciation of, RLS.   I paid some specialist $400 to tell me he could do nothing and rubbish my suggestion that diet could have any effect.

Cheers

Graham

10

Just this morning I found "The use of gabapentin should be reserved for cases with a neuropathic component. There has been recent clinical and experimental evidence supporting the possibility of a beneficial effect of L-acetyl-carnitine"" in a medical paper by members of the Unversity of Cantania. I'll give the web reference to it in a post below so the information in this post is not held up for moderation.

11

"Restless Leg Syndrome" G.F. Ingrassia” Department, Neurosciences Unit, University of Catania, Azienda Policlinico Vittorio Emanuele, Department of Medical and Pediatric Sciences, Department of Biological Chemistry, Medical Chemistry and Molecular Biology, University of Catania.

http://www.actamedicamediterranea.com/medica/2012/med2012_pag-153-155.pdf

12

Hi Graham, yes that would be good! I have been trying to get an appointment with Prof K Chaudri at kings college hospital, have you heard of him? He comes highly recommended. I definitely need to talk to a specialist as I have so many unanswered questions.

May I ask do you suffer any other symptoms along with your RLS? I don't know if what I'm feeling is normal. (What is normal lol)

Thank you for your help. I have downloaded the FODMAP app and definitely will give it a try!

13

Dear Cassi

Good on you for trying the FODMAP   I hope it works for you.  Please be strict with yourself.   I found that a small departure from the diet can spoil the whole effort.

There seems to be a hundred symptoms which we share and alternate between,

I have a problem that is diagnosed as sciatica which sometimes seems to blend into RLS.   One doctor who is quite switched on told me that the sciatica can trigger the RLS so his plan was to fix the sciatica first and see if the RLS continued.   Unfortunately while doing my sciatica excercises I pulled a muscle in my groin and I am now waiting for that to heal before getting back to the excercises.    I had RLS long before sciatic problem so I dont know how effective it will be.     

I also had involuntry limb movements when lying in bed.  There is a name for this that I can't remember.    I kicked my wife quite severly and sometimes hurt myself by kicking the bed end or a piece of furniture near the bed!     I don't knnow if this is related to the RLS but it has decreased significantly with the FODMAP

I am in Australia and haven't heard of Prof  Chaudri,   He sounds like he should be a good man to work with.   Let us know if he offers any revelations.

In the meantime my money is on RobertT to keep us up to date with the latest research.    Isn't it good to know that there is research being done by some people who take it more seriously than many medical experts.    I hate doctors who smile and say no one ever died from lack of sleep.   They obviously haven't had to drive to work at 7am after falling asleep at 6am!

Good Luck

Graham

14

Hi Cass, as Robert indicated the RLS brain is a poor manager of iron. Parts of our brain are literally anemic it seems while other parts, the mitochondria are hogs. Scientists have literally seen all this by autopsing the brains of people who seemingly had RLS during their lifetime and by PET scan of living RLS patients. I know you're taking iron but if you're like me (and I think we are all very much alike) then you have to take a very broken down form of iron called iron bisglycinate and you have to take it on an empty stomach during an attack or right before bed. The iron has to cross the blood brain barrier at the right time in order to work. Provides relief for six to eight hours and has to be repeated with each attack. So tonight I stupidly drank diet pop and developed restless body. I had to wait hours for my stomach to empty and now as I'm typing this my RLS is melting away. It was so bad a few hours ago and I was so tired but if I sat down I would have to make convulsive movements in order to relieve that bizarre urge to move. By the way the reason the iron works is because we with RLS have a very pathetic dopamine transport system likely due to that lack of brain iron reserve. Amazingly enough by day we're ok and that's because our blood levels of free floating iron is relatively high and our dopamine transport system hums along but at night those levels drop. Less iron means less dopamine released into our central nervous system where it quiets our arms and legs. Stay away from melatonin antacids and antihistamines.

15

Thank you everyone for all of your pearls of wisdom. I'm in such a bad place at the moment, RLS and other symptoms of 'rushing' feeling seem to get worse every day. Now it has got to the point where I am experiencing restless legs throughout the day too, and my precious morning recovery sleep has now been snatched away from me. I woke up this morning feeling what I can only describe as a 'rushing' feeling as though I have been on drugs. I have nausea and my legs are playing havoc. I feel asthouhg the blood running through my body isn't my own. My body doesn't feel right at all.

I am so sorry to come across so negatively about something that you all have had to deal with for years, but I'm terrified that these symptoms are linked to something more serious. It's almost unbearable. I have always been a happy positive intelligent woman, I achieved a law degree a few years ago and last year got married to my partner of 6 years. This should be the happiest time of my life, I thought I had everything to look forward to. I just don't know where to go or who to turn to.

I have an appointment with a specialist but that's in October. I really just don't know how to cope with this.

16

Thank you Udon, I will go out and look for the iron today! I would be ever so greatful for any amount of relief. Unfortunately my restless legs has decided it can attack me in the day time now too.

17

Thank you everyone for all of your pearls of wisdom. I'm in such a bad place at the moment, RLS and other symptoms of 'rushing' feeling seem to get worse every day. Now it has got to the point where I am experiencing restless legs throughout the day too, and my precious morning recovery sleep has now been snatched away from me. I woke up this morning feeling what I can only describe as a 'rushing' feeling as though I have been on drugs. I have nausea and my legs are playing havoc. My body doesn't feel right at all.

I am so sorry to come across so negatively about something that you all have had to deal with for years, but I'm terrified that these symptoms are linked to something more serious. It's almost unbearable. I have always been a happy positive intelligent woman, I achieved a law degree a few years ago and last year got married to my partner of 6 years. This should be the happiest time of my life, I thought I had everything to look forward to. I just don't know where to go or who to turn to.

I have an appointment with a specialist but that's in October. I really just don't know how to cope with this.

18

Thank you Udon, I will go out and look for the iron today! I would be ever so greatful for any amount of relief. Unfortunately my restless legs has decided it can attack me in the day time now too.

19

Are you on the birth control pill? There might be a connection? No sugar substitutes, right. Or melatonin? R u taking any supplements or medications? Well if u are and they're not life saving medications maybe try a holiday from all. Do you have allergies? Could u have an infection? In the face of infection our bodies withhold iron from bloodstream in an effort to starve out the microbes. All living things love and need iron so really a very amazing defense mechanism. But we who are pre-disposed to RLS will be miserable during time of infection and iron withholding.

20

Hi Cassi,

​May not help but I thought I'd put down some thins from my history of RLS that 'may' be useful for you.

​Six months after I got married I was very ill and RLS increased. Answer was anxiety due to the change, the responsibility. Valium fixed it. Now you also haave a stressful job and now considerable health worries. I'd suggest you as your doctor for preferably .25mg ropinirole or otherwise a benzo to get you to Ocober. Can't harm and may well help get some sleep.

​I used to get to sleep with leg raises. Both legs to tire them out, gave short relief and could drp off, if not repeat and repeat until it worked.

I have a lower leg and foot massager that helps

The big excercise balls are great to sit on, Watch TV etc and the tiny balancing movements keep rls at bay for me.

​Yoga is good as it promotes good breathing which aids sleep and relaxation.