Doversoul

I have suffered RLS for many many years and when I look back trying to see how it took a hold over my life my start point is enduring nerve damage to my legs although not directly. There is a school of thought that RLS is inherited, a dopamine problem or due to nerve damage.

My initial problems may have also be due to having suffered meningitis as a new born, However, my problems first started back in 1993 when i took plane to Scotland. The next day I had a burning sensation in the top of my left leg and numbness around the thigh. A trapped nerve was diagnosed and had an operation to release the nerve where it was thought to be pinched, After the op, my condition was worse and I was prescribed a daily dose of 400mg Nurofen to help me cope with the discomfort and burning sensation. I got on with life and at that time a passion of mine was squash, Incredibly I found that the intensity of the pressure on the trapped nerve during the game actually had a positive benefit in coping with the symptoms.

Moving on many years , sleep problems, both wrists carpal tunnel syndrome , ulna nerve damage left arm,(operation to release nerve which failed, etc) and I arrived at a RLS diagnoses in 2008.

I haven't come across a family history of RLS , dopamine activity not found to be a problem, iron deficiency has needed supplements to correct, and not had any accidents that would have caused limb nerve damage. Thus, have come to conclusion that my RLS could well be due to the meningitis as a child and nerve damage caused by cabin pressure experience on the many business flights I made across the globe and closer to home.

I walked 10+ miles daily and my RLS is no worse or better for doing so. Quality sleep is a problem and I still have a compressed nerve in left leg, carpal tunnel both wrists and trapped ulna nerve. I now have RLS/ PLMD, heart issues and need to take daily blood thinners, plus Prostrate and Bowel issues.

As I live alone, I just get on with life as I find it each day. That would be my best advice to you.

Munroist in reply to Doversoul

Thank you for replying and for the advice. There does seem to be a connection with neural damage and RLS, although there doesn't appear to be an accepted explanation. However while I agree you have to accept what's happening now I don't rule out that things can't be improved and I've seen that the people here are very experienced and can be very observant so I'm interested to see what turns up.

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Manerva

Genereally, as you surmise it's acceped that intense exercise can make RLS worse. Moderate excercise especially stretches, can help releive RLS.

You'll have to find your own level.

Munroist in reply to Manerva

I agree, for everyone it's a personal journey. However other people can sometimes help you onto the right path. Thanks for the reply.

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rls-insomniac

Hi Munroist,

As you say, it's personal to the individual. I play a lot of golf which involves quite a lot of walking, stretching of my back, legs etc. I try to play in the mornings when I can. I find that if I play later in the afternoon, then my RLS symptoms are worse in the evenings than when I play in the mornings. Some say that rigorous exercise can exacerbate RLS symptoms and exercise is best done earlier on in the day rather than the evenings. Everyone is different of course.

Munroist in reply to rls-insomniac

Thank you. I normally struggle with the mornings because of poor sleep but maybe a bit of willpower will result in better night - virtuous circle.

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rls-insomniac in reply to Munroist

Whilst I was suffering from dreadful augmentation and withdrawing from ropinirole, I was terribly sleep deprived and was at an all time low. I struggled through my tiredness and played golf. I felt a lot better being out in the fresh air. I do appreciate, of course, that golf is a less strenuous game! Maybe you could try and take your foot off the gas pedal a bit and try exercising a bit less intensely, it might be of some help.

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Munroist in reply to rls-insomniac

I’m already doing that, thank you, and it may be the only answer. However we’re all looking for a solution and I’m optimistic I can improve things even a little. Certainly worth looking.

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Munroist in reply to rls-insomniac

Hi rls-insomniac, I received a couple of emails linking to further posts from you where you suggested exercising earlier and also asked if anything else caused the severe symptoms. However I can't find these posts on the site, I think there are bugs with the software as some of my own replies have not appeared. Thanks for the further replies, I have a background level of RLS which used to mean waking once or twice a night because I needed to move for which I have to get up and walk around for a bit. However I find it's only heavy exercise which makes the symptoms worse to the point that I either don't sleep for several hours or get 30 minutes at a time before I'm woken. I've no idea whether this sleep is useful but I seem to be able to function reasonably well, although I'm not exactly bright after those nights.

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rls-insomniac in reply to Munroist

Not sure what's happened, other than I did amend a reply and may have pressed the wrong button!

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Amrob

Vigorous exercise significantly worsens my RLS/PLMD - beyond any shadow of doubt. There are limited studies to suggest regular exercise can improve symptoms of mild to moderate RLS.

Munroist in reply to Amrob

Thank you Amrob, that does seem to be the general view and also my experience i.e. moderate exercise is OK, but intense exercise makes RLS a lot worse. I think there are probably many factors influencing this e.g. age, exercise, possibly diet and gut health (the SIBO stuff). If you take sleep for example though there's the concept of good sleep hygiene which is a set of things you can do to maximise the chance of sleep (e.g. no coffee, waking and going to bed at the same times, avoid blue light etc.) and I'm just wondering whether there are some approaches which might help to exercise with less impact on the RLS e.g. one thing many people say is go early.

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silvia10

My idea about rls is not the regular idea, I think it has to do with too much tension in the muscles and fascia. The dopamine idea never felt right to me. This is also a new theory in Germany by liebscher-bracht.com/ And it did help a great deal. Intensive exercise with repititive movements gives more tension in de legs. it is about the stretching of the muscles and fascia to get it loose again so stretching is the key. Im doing 45 minutes yinyoga to loosen the muscles and it helps a lot.

Munroist in reply to silvia10

Hi Silvia, thank you very much for the reply. I think the fact that dopamine drugs make a difference for a lot of people shows there is a dopamine aspect to this. However like you I also feel there are other mechanisms at work, and in particular the state of the muscles after exercise. I feel there is a connection between how stiff or sore my legs are and the intensity of the RLS, but also where I FEEL the RLS and how it feels to me. That could indeed be related to the muscle fascia and personally from cycling I find it's the areas around the ITB which are often most intense and I believe the ITB is predominantly fascia. I also find cycling is worse for RLS than walking and I feel that it is the combination of high intensity work with very little rest combined with repetitive movements that is the cause which I think agrees with your view. I do stretch, although probably not enough, and I am not sure how much it helps, but it's a good idea generally and many RLS sufferers say it helps so I need to get a better routine there. I will look into the link you sent me, thank you. Your response also supports one of my areas of investigation which is how to exercise more sympathetically to your body, to increase rest, reduce strain and condition better afterwards.

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silvia10 in reply to Munroist

if you need to know my yinyoga routine, give me a shout.

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Sootired15

Hi Munroist, I've exercised in some form or another all my life (I'm now nearly 70) I've also had RLS all my life, well, for as long as I can remember. In all honesty, I can't say I've noticed any difference in the intensity of my RLS due to intensity of my exercise. I'm virtually moving all day & most of the night so, I'm happy to exercise & make a positive out of a negative. If that makes sense?

Munroist in reply to Sootired15

Hi Sootired15, Thank you for the reply. I agree with making a positive out of a negative and often find that after an active night, the kitchen is clean, lots of small jobs have been done and I've found all those things I misplaced during the day. Those things can help reduce the stress and nativity of the condition. One of my big issues however is the fact that sleep is so important to almost every function so I still want to try to maximise is, but without having to become sedentary during the day. On the exercise and RLS I definitely feel there is a strong link for me, and others report the same. After a week without cycling I am now sleeping better, for longer periods and managing to hear the alarm. It will be finding the balance between enjoyable useful exercise and getting decent sleep.

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iloveclimbing

Hi there Munroist,I've definitely noticed an increase in my RLS when I up the ante on exercise - but like you mentioned, only when it gets to more intense levels. Mountaineering is the absolute worst of the worst if I'm not properly acclimatised.. Long distance trail running can be problematic - like when I've been out for a few hours in hilly terrain. I've managed the RLS after long runs by soaking in an epsom salt bath. Whether it's the extra magnesium or the effect of the warm water on the nerves (or combo of both) I'm not sure. But it helps so that's the main thing.

It seems most of the discussions on here are around the meds that people take, but I tried a few and decided I want to try to manage it drug free. I've started a new diet with a few supplements and I have to say, it seems to be helping - so perhaps you could look at your vitamin and mineral requirements with the increase in exercise?

Good luck and I hope you can keep up the training!!

Munroist in reply to iloveclimbing

Thanks for the reply iloveclimbing. Like you I want to try to avoid the medication and am lucky enough at the moment to be able to do that. Magnesium is something I've seen mentioned a few times so I will look into that. I've started taking multivitamins for the first time in my life although I don't really feel there's a difference yet. I will definitely try the bath after a hard ride. I feel there is a connection to muscle soreness and stiffness and have looked into what causes that e.g. DOMS and much of the advice is that regular small amounts of exercise at relatively low intensities can really help prevent the stiffness. This is slightly counter to the tendency to keep ramping up intensity and duration on exercise (the more pain, more gain approach) but I'm seeing a lot of coaching advice saying that you need to interleave a lot of easier recovery exercise in the schedule and that rest is vital after the exercise and in some cases it can be beneficial during exercise. I feel these things have some potential to stop the muscles getting overtired which I feel contributes to the intensity of the RLS symptoms. There are other 'macro' approaches which is to have "off seasons" where you just wind right down and save the harder exercise for when the sport is more enjoyable. Hope you are successful. I'll come back if I find anything which really helps.

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DicCarlson

I'm an avid cyclist and cross country skier. Severe RLS came on to me suddenly. I had been training for a 40 mile mt. bike race. The day before I did a hard, short ride, high heart rates. I had my big plate of pasta and went to bed. 2 hours later I was awake and up - never to return to sleep!

RLS was so severe, I had it in my arms and upper body and a constant buzzing during the day in my feet and legs. I called my race friends and to their amazement I told them I couldn't race. I was all trained up but hadn't slept at all.

This was in early June 4 years ago. Search, search, search on the internet. Docs gave me muscle relaxants - no help! Months went on - going to work every day with 2-3 hours sleep, mostly gotten with my legs raised almost vertical. I discover the iron connection to RLS by reading of a "home remedy" - black strap molasses. On night I took 2-3 tablespoons of the molasses and to my amazement, it cut into the RLS. I then read the Johns Hopkins Neurology website - Bingo - the iron hypothesis!

Getting back to the exercise - the intense high heart rate exercises, cycling or skiing did make my RLS worse. I cut back to still exercising, but at painfully low heart rates (I use a heart rate monitor).

Ferrous bisglycinate chelate helped raise my Ferretin from 49 to 105 within 3 months. RLS mitigated, but protracted insomnia continues. I rarely take the iron - maybe once a week now. I exercise now all that I can at any heart rate. I never did DA drugs even though they were offered. I had discovered this forum and read enough to not go down that road!

Munroist in reply to DicCarlson

Hi, thanks for the reply, sorry to hear about the insomnia. My ferritin is over 100 already according to my blood tests which may explain why iron supplementation via normal vitamins isn't doing anything, or I may be one of the 50% for whom iron therapy doesn't help. However I haven't tried the more heavyweight iron formulations like Ferrous bisglycinate yet so it remains an option, depending on how I get on with the exercise. I'm trying to work out whether high heart rate but low muscle strain(e.g. spinning on a bike) is any different to moderate heart rate but stronger muscle contractions like hiking uphill. Despite the issue being connected with brain iron deficiency I still feel there may be some changes to the muscles brought on by exercise which makes them more likely to twitch so it's not all up in the brainstem.

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DicCarlson in reply to Munroist

This might explain some of the exercise issues with RLS... sciencedaily.com/releases/2...

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Munroist in reply to DicCarlson

Thanks, I saw this while looking around and it seems to support my home-grown musings. What isn't clear is how these nerve cells get overexcited and whether there are ways of avoiding it e.g. manage training intensity or duration, or remedying it e.g. the contributor who said hot baths with Epsom salts helps him after exercise, or maybe stretching .. although that doesn't seem to do a lot for me.

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Munroist in reply to DicCarlson

Also .. could explain why neuropathy is frequently connected to RLS as the nerves most often impacted by lower back/spinal issues are those in the legs which in my case became over sensitised, I was told.

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WideBody

I have done ultra bicycle riding, 400km (Approx 253 miles) in about 19:30. I did have some massive fasciculations. The fasciculations have calmed down tremendously with iron supplementation. I think every one is different. Pre-covid I did hot yoga practically every day. All the studios are closed for covid. Suanas... I used to love saunas...

Covid is killing me.

😜

bill54321

Remember, I said RLS in the day is related to SOMULANCE. A BRAIN ISSUE. Execrise during this period only makes you become fully awake. So, getting up and being active will reduce solulance.. BEING fully awake turns off the RLS (for me) Since the Sleep organization have done research on fatique and not pre-sleep, it is no wonder there is confusion. Please. Some one prove me wrong with FACTS.

RLSofManyYears

I'm also a mountaineer, wild camper and skier. I'm in my late 60s, live in Scotland, and over the years I've found that heavy exercise e.g. a weekend workparty can make my RLS worse from a day to 3 days afterwards. However when I'm out wild camping then generally the day's exercise simply causes me to sleep well. Similarly on skiing holidays then I tend to sleep better. So I'd agree that heavy exercise causes the problem.Currently my symptoms are better as I'm now on Temsegic and sleep through the night. Prior to that, if I was up in the night, then I'd use a vibration plate for my legs and this seemed to help reduce the symptoms (moderate exercise).

Munroist in reply to RLSofManyYears

Thanks, I'm glad you have a solution that lets you sleep. I also find the effects of exercise last several days whatever change takes place takes some time to settle, for me I can still just about see the effects a week later. I had though it might be related DOMS but that doesn't tend to last as long in my experience

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JeroldinCitrusPark

Exercise should be OK as long as it is age and medically appropriate. I find that I have to exercise early in the day or it does bother my RLS if it it done after 5:00 PM