Restless legs - linked to heart disease?

Posted , 5 users are following.

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

0 likes, 35 replies

Report / Delete

35 Replies

Next
  • Posted

    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

    Report / Delete Reply
    • Posted

      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.

      Report / Delete Reply
    • Posted

      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.

      Report / Delete Reply
    • Posted

      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.

      Report / Delete Reply
    • Posted

      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.
      Report / Delete Reply
    • Posted

      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.
      Report / Delete Reply
    • Posted

      Howdy.  Yes, some old and some new articles indicate that acetyl-l-carnitine influence release of dopamine in brain.  So it's a DA, like potassium and possibly magnesium.  Speaking of magnesium, I just took two magnesium threonate capsules to see if they will help the RLS I have right now.  I will give it an hour then run for the iron.  It would be nice to find an alternative to iron.  Magnesium, carnitine, potassium all have health benefits beyond RLS so those seem preferable.  But nothing seems to work like the iron.  Nothing stranger than real life.  I recently read about someone who never had RLS in her life but got it after she stopped supplementing with magnesium.  I found this so fascinating that I went on to see if anyone else had this happen.  I found yet another person who was taking a supplement called zam I believe which was zinc, magnesium and something else and developed RLS either during or after taking supplement even though she never had it in her life.  She was quite upset and someone else on the forum (not an RLS forum) assured her it would pass.  She said that after she stopped taking Neurontin she too developed RLS but that after a month it went away.  She said the same thing happened to her mother.  Neither her or her mother were taking the neurontin/gabapentin for RLS.  As a matter of fact they never had RLS in their lives.  I think what's happening here is we're seeing people who are pre-disposed to RLS and who take these substances that basically beat a little more dopamine out of those receptors and end up making their receptors temporarily bad in the process.  After a long enough time off of these substances their dopamine receptors return to baseline.  And for them, baseline dopamine receptors are good enough so that they don't get symptoms of RLS.  I will post a few articles like you did. 

      Report / Delete Reply
    • Posted

      Robert below is the conversation.  I deleted alot in the hopes it wouldn't be moderated and you could see what I was talking about.

      Hi I was taking one ZMA at night before bed for a few weeks and then haven't for a few nights because i thought it was keeping me awake. All of a sudden last night and tonight, in the evening (not sleep time) i have the worst Restless leg syndrome.Anyone think this could be why? Does it just come and go? I've never really had it like this before!! it's making me nuts just sitting here.dana

      I'm not sure what ZMA is but I have RLS. So I know how you feel. Hope you get some answers. Take Care, Cheri

      I have been taking the ZMA for 17 months now, and it stopped the RLS completely. I could not imagine that it could cause RLS

      If you think its keeping you awake (it helps me to get to stage four sleep) then take it earlier in the evening.The magnesium in ZMA should help calm you down, not make your legs jump. Its a natural tranquilzer.

      thanks what i meant is i was taking it and didn't have RLS and now i stopped and have it suddenly, so i'm wondering if stopping it caused it or let it come back?

      I was taking neurontin for a while, and when I dosed off I had RLS for a while. I had never had RLS before. My mom had the same thing happen when she was on neurontin and went off. It went away for both of us. Not to worry, should only be a month or so.

       

      Report / Delete Reply
    • Posted

      RLS gone within 45 minutes of taking two magnesium threonates.  Proves NOTHING.  Will keep repeating to see if it truly is the mag that's working.  Bedtime smile

      Report / Delete Reply
    • Posted

      In addition to Melatonin, 5htp can MAYBE be bad, very bad for RLS.  5htp increases serotonin in brain just like antidepressants.  The serotonin competes with dopamine.  We don't want anything competing with our brain's already pathetic transmission of dopamine.

      Report / Delete Reply
    • Posted

      As I've said before Udon, you seem to have a particular form of RLS which responds well to iron even though your iron stores as measured by blood tests are high enough. I'm still taking 90 mg of iron (Ferrochel) every night, but onset of my RLS is currently as early as 2 p.m., although it's still the case that the extra iron does seem to have stopped the shuddering I used to get. We really do need to get all this together. I feel I'm starting to get a little short of knowing what the world's medical research establishments are currently doing in regard to RLS.

      Report / Delete Reply
    • Posted

      Thanks for the link Udon.

      I've got 500g of Acetyl-L-Carnitine powder on order, to arrive today or tomorrow. See how it goes over the next few months!

      Report / Delete Reply
    • Posted

      Hi Udon, this is interesting because I have often pondered on the thought that I may have been taking too many vitamin supplements during my life. Especially the couple of years prior to the RLS I had been taking a multivitamin, magnesium, B complex. Maybe this was harmful?

      The worrying thought for me is that my RLS started a year ago and every night become increasingly worse. Even when I think it can't get worse, it does! I'm 29, I feel as though I have no quality of life, I'm an absolute mess.

      Report / Delete Reply
    • Posted

      Dont throw the baby out with the dirty bath water.  Vitamins are probably fine it's 5HTP, melatonin and tryptophan that we, who are pre-disposed to RLS, need to avoid.  Melatonin gave me wicked restless body and I didn't make the connection for years. 

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up