AGM 2017

I attended the 2017 AGM in London yesterday and learnt about Isometric exercise. I learnt how it increases muscle mass and as a consequence, Dopamine amounts. The exercises demonstrated targeted thigh and calf muscles. As always, I developed RLS last night and therefore used these exercises. Weather it was because of the exercises, I don't know, but I had enough sleep to enable me to function today reasonably well. Hopefully, I have discovered a treatment that enables me to resume a normal life. I hope this post helps other sufferers. Tom.

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  • Yeah, wasn't that interesting to learn? Everyone talks about aerobic exercise, but not anaerobic.

    He said he would post pictures of the types of anaerobic exercises, so I'm eagerly awaiting that.

  • Hi Jess, I do the chair exercise daily but had not thought of introducing weights. :)

  • Me neither. I do a lot of aerobic exercise, but now that I know about the anaerobic I will definitely start introducing weights. I have access to dumbbells at my gym, but I might also go buy some for the days I don't go. I have been mostly going to aerobic exercise classes like yoga, pilates, and dance, but now I will start going to some of the weight lifting ones.

  • Me too, I think there's something to this. But I don't know a lot about isometric exercise. L'm looking forward to the specific exercises-or perhaps a book that will explain the.

  • He said that he would put them up on this site.

  • Did they explain how building up muscle mass is connected to RLS?

  • (Kaarina, can you correct me if I'm wrong here.)

    Dopamine levels play a role in RLS, right? If so, then there's your answer. The speaker talked about how our muscles lose mass as we age.The lower the mass, the less dopamine we have in our system. He said that the more muscles stimulated in our daily exercises, the greater the dopamine, and therefore the better the effect of helping combat our "attacks".

    He also said that the best times to exercise are when our hormone levels peak at around 11am and 7pm.

    Let's see....oh, he also stressed the importance of contracting the muscles.

  • Yup! Spot on, Jess. :) Increasing muscle increases dopamine was the message from Giorgos Sakkas.

  • Hi. Giorgos Sakkas mentioned that dopamine is produced in muscle tissue as well as other areas of the body. As we age, our muscle deteriorates and therefore produces less dopamine. That explains why RLS worsens as we age. Exercising anaerobically builds up our muscle tissue again and therefore produces more dopamine. He mentioned Isometric exercise as a means of building muscle. Obviously, the muscles needing to be built up are our leg muscles. Sakkas demonstrated a couple of exercises and stated he would put more on the website. This is how I understood Sakkas's lecture. Please feel free to correct me. I did also ask why RLS worsens in the afternoon and evening. Sakkas didn't know and was unable to answer. Tom.

  • Hi!

    I remember you now! I'm can't remember if I introduced myself or not. I was in the front row and was the youngster there (sorry guys, but it's true). That was a great question! There is a post from me (from awhile back) entitled "why???" where I ask the exact same thing. I got lots of replies, so you might want to check it out. Just click on my username and scroll down to that post.

  • The reason RLS worsens in the evening /night is because it follows the body's circadian rythm which is the internal body clock and levels of dopamine drop so less for the Dopamine receptors to grab x

  • Hi, the exercises sound very interesting. would you let me know how I can access them to have a go? Or are they basic isometric legs exercises that I can google? Thankyou

  • The simple ones were - sit on a chair, fold your arms across your chest and stand slowly. Do this ten times, several times a day.

    - stand and go up and down on your toes. Without knowing about this being beneficial long term I do this when I'm watching TV and can't sit because of rls.

    Saturday's meeting achieved a remarkable success - a large number of the 120 people present sat, almost continuoisly, from 9am to 4.30 with very little jiggling.

  • Although I wasn't visibly jiggling, my legs were moving all the while. It was so annoying. Maybe we need to arrange to do Sakkas' exercises during next year's AGM. Who's with me? 😁

  • Hi Eve,

    The simple exercises were as LoisTonya says and then add weights to the exercises ie start with a small bottle of water in each hand and gradually increase. It was recommended to do each of these exercises SLOWLY to a count of ten, three times a day.

  • Thanks for these explanations!

    Does Giorgos Sakkas have a website where he will put his exercises? If so, what is it?

    I am a bit confused about his explanation. I understood from the scientific papers that we have enough dopamine but fewer dopamine-receptors (kind of doors with a key that only let dopamine-and the like substances into cells to get transoprted further). And that is in our brains. See also Elisse's answer to Jess' earlier post Why???

    So I still wonder how leg exercises help to make our brain cells work better. Shall see if I can contact Sakkas directly.

    Does anyone know where he works? Which univ, hospital or institute? May help to locate him....

    We have a meeting in NL at the end of the month, but the program is only very basic - one general lecture. Don't know of there will be a neurologist around to put this question to.

  • I completely agree with you Lotte. We have enough dopamine. It just doesnt reach to where we need it. Its Parkinson's disease that doesnt have enough dopamine.

  • Hi LotteM,

    His title is Dr. Giorgos Sakkas, Associate Professor, Faculty of Sport, Health & Wellbeing At Marjon University Plymouth. You can google his name to find more information should you wish.

  • Sounds worth trying I don.t understand how doing excercises tonight would increase muscle mass tonight and how that would increase dopamine tonight. I would have expected that if I start excercises tonight then I will have a useful increase in muscle mass in about two months which might increase dopamine and help reduce my RLS. Was this explained or was his point simply that excercise might increase dopamine and that might be why we all walk around in circles every morning.

    I have tried isometric excercises while lying in bed and cursing and it has never helped. I always have to get up and walk around.

  • No he didn't suggest immediate relief, he was saying that we should build up our muscles to increase Dopamine. He suggested evening exercise as morning exercise can make RLS worse (I've found that). He was from Plymouth, I think, but he is going to post on the RLSuk site.

    Brilliant day! I came away recharged and with some new ideas. Pity that so many who post on here were present but we couldn't identify each other. Next year I'll have a badge like LoisTonya!

  • The title of the workshop was Exercise as a means of reducing RLS Symptom Severity. As John says he did not suggest immediate relief.

    He suggested exercising roundabout 6 - 7 pm.

  • Adding onto John's last comment:

    How many people on this forum were actually there? I talked to Lois, Kaarina, Splints, Fay (?), and a few others whom I regrettably don't remember. If the guy who talked to me at the end regarding getting second opinions is reading this, can he identify himself for me? Thanks!

  • I was there for afternoon only ( had bad night) and was frustrated I couldn't identify anyone I speak to on here. Name badges is a brilliant idea. I was sitting at the back with hubby and asked a question about how we improve existing GP knowledge of RLS.

    I sat near a lady who was in clear discomfort & briefly whispered to het. She was on ropinirole, had been for years and clearly had Augmentation.

    I only had time to whisper that she needed to read about it and get off the ropinirole.

    Maybe next year I'll manage to get there earlier.

  • Oh, was that you with the blond hair? Sorry I missed you! Next year then...

  • Yes that was me! Where were you sitting? Left / right side / front etc?

  • Oh, darn! I was on your side front row. I had my hair up in a clip and asked the GP the question about what to do about a neurologist who brushes you off.

  • Lois and I were talking about you at lunch. (No worries -- nothing bad). We were wondering if you were coming, that's all.

  • American accent? I couldn't see who was asking the question . How annoying that I didn't get to say hi to you.

  • Yep! Were you wearing a name badge? I know I should have worn one.

  • No, but next year I'll wear a great big neon badge! Might suggest it to Daragh. What was your view on Dr Kirstie Anderson and her view that if we all stop drinking/smoking/being overweight, we would reduce RLS?

  • No comment since I don't smoke, drink, or consider myself overweight (although my BMI begs to differ) 😁

  • Ha ha. I was actually tempted to interruptto ask how many people actually smoked or drank as I'm sure no one would have raised their hands. I haven't had chocolate for over a year either

  • That's a great idea! Name badges would've been good.

  • We did actually suggest this to people as they arrived but so many declined that we stopped!!!

  • Oh, really? Too bad.

    It was great to meet you, Daragh!

  • Hi jools,

    Now that you say you were sitting at the back, near the windows, I did see you and wondered if you were jools. I was sitting on the other side about in the middle. I remember you asking the question. What a shame we did not meet up. Next year hopefully? :) I am so pleased that you did attend and hope you found it helpful :)

  • I just wish I could have made it earlier and met you in person Kaarina. Definitely next year!

    I did find it helpful, particularly Dr Spinks. I'm going to get in touch with my contacts at St George's med school and neurology dept to see if we can do something about raising RLS awareness. I am a guinea pig twice a year at the med school (for MS) but RLS is a more serious illness by far ( I can say that as I have both). Dr Spinks has inspired me to get on with it.

    Really enjoyed finding a hidden part of London I never knew existed as well (& I've lived here for over 33 years).

  • I am sorry you had a bad night, Jools. I am pleased that you still attended and that you found Dr. Spinks session helpful. Great news if he has given you inspiration to raise RLS awareness. If you require any of the RLS leaflets/posters/business cards, just let me know and that can easily be arranged. I really liked the venue. This was the first year the AGM has been held there, as far as I know. :)

  • Thanks Karina. I have a stockpile which Diane sent me so I'll hand some over to my neurologist tomorrow. Hopefully she'll display them in the Neurology waiting room.

  • You are a star. :) We must say hello at least to each other in September 2018! :)

  • Kaarina, being not a RLS-UK member and outside UK, would it still be possible to get access to or receive summaries of all the talks given at the AGM? So many of them sounded interesting and made me wish I could have attended to learn more.

  • I was at the meeting too - you may have spotted me taking the minutes. I will try and get some labels ready for next year!

  • Aah, yes! I talked to you in the line for lunch. It was nice to meet you!

  • Hi Lotte,

    There may be some feedback of the talks on the RLS-UK website or their FB page in the not so distant future. RLS-UK paid up members will receive a summary of the talks in the next issue of the newsletter. You are welcome to join us.

  • I opened up and mentioned to the group that I had been experimenting with timing to no avail. Lots of people seemed to agree that timing makes no difference. It sure is frustrating!

  • I exercise with elastic therabands in bed at whatever time RLS wakes me and keeps me awake. My chiropractor gave me leg exercises to build up muscle in the glutes and thighs and they definitely distract/ help that horrible creepy crawly feeling enough to get me back to sleep.

    Clearly, I have my timing wrong but I'll try to do them at different times as well.

  • Ooh, bands sound great! I should do that.

    You said the word "distract". Yes, that was mentioned as well. Having a distraction seems to help as it occupies our mind with something else.

  • When my RLS wasn't as severe as it is now I devised a way to eliminate it for that one night. I got on the floor on my back and kicked my legs for 5 minutes and it was gone. Before that I would jog in place for 5 minutes and it would go away. I'm glad I didn't know that exercising at night could excite the RLS. It was better than taking pills for it. Did look silly though. Has anyone else ever tried this?

  • Maybe this explains why my RLS is better when I do yoga in the early evening, 12 poses for Osteoporosis held 30-60 seconds each. From Wikipedia: In isometric exercise you strengthen muscle by holding your body in a static position, as in yoga.

  • Question: is isometric exercise the same as anaerobic exercise?

    If so, then yoga is anaerobic? Thought it was aerobic. What you say makes complete sense, though. I guess pilates is anaerobic too since it's about strengthening the muscles...

  • It is so FANTASTIC to hear people talking about NON_DRUG RLS management! Maybe we can also discuss the emotional/psychological aspects of our illness. There is a great big elephant in the RLS room and none of us have been noticing this guy. I have been on Mirapex for 20 years, have massive RLS leg and chest/arm insanity and I know that there is an unknown answer to my/our problems.

    With drugs, we treat the symptoms and not the physiological and emotional "causes". So many of the drugs that we use to treat RLS are strong PSYCH MEDS - what is really going on here?

    I can see an obvious correlation between my daily physical activities and RLS. Also, I can also see a strong emotional connection to my RLS. I can not stop my pills (yet), but I can start specific exercises and emotional/stress healing - that I believe will eliminate my RLS.

  • Totally agree about there being a strong psychological aspect!

    Hey, you might be interested in my post "relaxation techniques". I talk about my experience with a psychomotor physiotherapist. My psychiatrist referred me to one after suspecting a psychosomatic element at play in my case. I've seen this PT three times so far, and the next appt. is on the 22nd.

  • If you've been on Mirapex for 20 years and have RLS in your chest and arms, that sounds like Augmentation.

    Look it up on here. You may need to get off mirapex ( very slowly and with help).

  • Why do you believe that exercise and stress reduction will eliminate RLS? This is troublesome to me because it implies that if we just have a take charge can do attitude we will have perfect health and it can be demoralizing when it doesn't work.

  • Hello!

    Who is this question geared towards?

    Hold on...got it. Can I come to Islandboy's aid here?

    I think his word "eliminate" was the wrong one here -- he should've used the word "help" instead.

    I understand your anger. The first time I read his reply I, in all honesty, just gleamed over his word choice. Now that you drew my attention to that word, though, I re-read his reply and can see where you're coming from.

    I think this might be a case of poor word choice on his part and you taking that to heart (correct me if I'm wrong --I want to be sensitive to your plight 🙂). When I am depressed I get ultra-sensitive about absolutely everything. (I am in no way, shape, or form saying you are depressed, so please don't take it like that. Rather, I am just trying to help iron things out here 🙂)

    Stress reduction and exercises help, not eliminate.

    I hope this helps.

    Take care,

  • Yeah, Islandboy. I am not depressed. I am a psychologist as well as an RLS sufferer. I was concerned about the statement "but I can start specific exercises and emotional/stress healing - that I believe will eliminate my RLS." I know that this forum is not a place people like to raise criticisms of what people on the forum say, but it was troublesome to me.

  • Yep, that's the sentence! I am not apologizing for him (Lord knows I have to stop apologizing for people!), but I am sorry it was troublesome for you! RLS is so dang frustrating and knowing that we can't eliminate it is just despairing! Yes, "eliminate" was definitely a poor word choice.

    Take care,

  • Hey friends, I'm back. I apologize if I offended anyone, that is NOT my intention. I'm Bahamian and although we do speak English, sometimes we use words for impact, without realizing that others may see a different meaning. I have been dealing with the hurricane, as it is ripping across my country, right now and have not been following this blog. Sorry!

    joolsg, thanks for the tip about Augmentation. This is new to me and I will study it.

    jess3648, I will indeed check out your "relaxation techniques". Do I ever need to learn how to relax !!!!!! I do know a lot about stress, anxiety and depression!

    The intention of my "Reply", was to start a discussion about non-drug techniques for mitigating our RLS problems. I have observed that many people on this forum are on psych-meds, as am I - Welbutrin. I am just surfacing from an unwanted and stressful divorce and my RLS has been insane.

    I am also a devoted student of the late Dr. John E. Sarno, Professor of Rehabilitation Medicine, at NYU, who has treated many thousands of people who have been suffering from chronic pain(and other problems) - without any surgery or meds. Some links:

    healingbackpain.com/

    unlearnyourpain.com/Dr.%20S...

    psychologytoday.com/blog/th...

    I used Dr. Sarno's teaching to completely stop extremely painful back pain, for which I was taking opioids and worse. I have, however, been unable to lessen my RLS, using similar techniques. But maybe I just don't yet know how to do this? I do believe that my "stressed. anxious and depressed" brain, is somehow making my RLS much worse and I was hoping that someone here would have some suggestions. I suspect that there are aspects of our RLS suffering, that we can lessen using non-drug methods. Now back to Hurricane Irma.

  • Islandboy,

    Hello! Thank you for your explanation re language. I appreciate it, as it helped me to understand. I also sometimes post things I don't intend to.

    Yes, I'm definitely with you in starting a conversation about non-drug techniques!

    I wish you all the best dealing with Irma!

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