Hi, I've posted here before so just a quick update - RLS for 47 years, tried DAs, Gabapentin, Pregabalin and on Tramadol at the moment. I've been through augmentation. Tramadol is helping a bit but my sleep pattern is all over the place and I keep falling asleep in the afternoon.
My daughter has had long covid and found that CBT helped her a lot. She is convinced that stress is part of the problem and that CBT would help my RLS. I can't see it myself but would be grateful to know if anyone has found it helpful.
Many thanks.
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restlessinlondon
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Stress can definitely make RLS worse. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you SueJohnson. I am on statins and BP meds, I also take multi vitamins. The triggers I recognise are alcohol and caffeine also deep fried food and dairy, not having enough exercise, having too much exercise! My ferritin levels are about 120. Have you tried the CBT route yourself?
As Madlegs1 said statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Also as Madlegs1 many BP medicines make RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran), Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor.
Hi Suejohnson its nick I just read your reply to restlessinlondon and you mentioned vigorous excercise now my wife has always said my restless legs went of the scale when I started working as a postman 21 years ago and yesterday during working hours and going into town after walked just shy of 18 miles and last night was horrendous real real bad no meds worked stood in cold bath and ended up wrapping up legs so I find this hard to say but its looking like my wife is right and has been for years clear girl 9👏👏👏
Hi Nick, sorry to hear that your RLS still is 't well-controlled. I just want to share that I recognise the negative effect of too much exercise on my RLS. Fortunately, an extra dosis buprenorphine almost always helps.
Is there any way you can discuss this effect on your RLS with a work-related doctor (don't know the English name) and see -maybe together also with your manager- whether there are ways to reduce your exercise load during work? Prepare with your wife!
It is all about finding the optimal balance. I hope this is useful.
That sounds good but royal mail has just increased my delivery from 489 CALLS to 739 and the same delivery time span so cant see any talks happening but great thought im seeing neurologist on the 16th next week and I'm going to talk about buprenorphine but unsure if available in the UK thanks for replying
That sounds bad, Nick, who do they think you are, Superman? You must be! Even when you do he t buprenorphine (contact Joolsg, she is on it too), your workload seems quite over the top. I really hope you get effective help from sensible people, at work and at doctor's. 💪🏻
No all on foot now adays even removed bicycles all to do with going green but they don't come much more greener than bicycles so we can't understand that removal
I may i add that I'm trying my hardest to quit being a postman but not much success at nearly 62 my age is against me maybe if im successful I might find some answers 😁
Hello Sue, Just a query, I note you have added fennel as a possible treatment for RLS... could you advise where I can obtain more information about this herb and it's actions in helping to treat symptoms of this awful condition. Thank you.
Thanks Sue, I have been using Fennel in small amounts which I think has tamed the symptoms down by about 50% I think. I have only started using it but certainly it is worth a try but I am not sure how much to take. Will keep you updated.
I agree it helps but if you are talking about my list of somethings that help. I am keeping that to non medical types or else I would have a really long list.
Stress MAY exacerbate RLS but it doesn't cause it. CBT can be a useful tool for dealing with chronic illness generally but i haven't seen anything to suggest it helps with RLS in any meaningful way.
I have tried several psycho- therapeutic approaches in the past (see my profile). These days I'd be more inclined to review diet and medications, and incorporate stress reduction/well-being strategies such as moderate exercise and yoga/meditation into my weekly routine.
hi deary i have tried CBT oil it didnt do anything for my restless legs but i am augamenting with whole body and arms going off i dont know whats best anymore its my 6th nite with RLs and here they are again its 9 48 pm and ive been in this situation since early evening asleep in the chair and afternoon when i have fell asleep in the chair so i have to stand up walk work ..and like now be on my computer but the oil didnt help in fact its still in the fridge un-used..
hi sorry i read that wrong must be tiredness its CBD oil ive tried but i thankyou. my daughter recommends i leave potatos alone i eat them everyday she says they are deadly nightshade family and that i ..like her am a celiac but here i am again restless legs blazing ive had 150mg lyrica, 30mg of codeine+paracetamol an epsom salt very warm bath 1hour in my beautiful warm bed my legs only calm down when im on this computer its 4 12 am in Australia x
I also live in Australia ( Melbourne).Presume u took your meds( codeine and Lyrica) before u went to bed and then 5-6 hours later your RLS symptoms r back?
I had the same issue as codeine only gave me relief for 4-5 hours also.Unfortunately it only has a short half life. I took another codeine when I woke.
After about an hour I was able to go back to sleep for another 3-4 hours which enabled me to get through my day.
hi Retiredlady i didnt get much relief none of the pills worked just half an hour then woke up in tears lyrica i took first, then codeine in bed once my legs began their nightly restlessness i spent the rest of the night in the chair i took a 1/4 of sifrol 0.08mg then went to bed at 9am because i was falling asleep at breakfast i stayed in bed until 11.30am i am here tonite 1 54 am without any pills whatso ever and only one little episode once i moved i was ok i do have a tiny few of hubbys oxycondone but i am scared to take them it seems all pills seem to make my legs jump i am coming off sifrol so legs are worse but what happens once i am totally withdrawn from dopamines what do i do then for RLs ..ps im in Perth🙄🤷♀️
So sorry u r having such a horrible time.There is nothing worse than that indescribable feeling rls gives us.
Sue Johnson and Joolsg r more qualified than myself to give u advice.I suggest u message them direct or write a new post which I am sure they will respond promptly to.
I am fortunate to have found a sympathetic sleep specialist who understands rls and is willing to prescribe opioids.It took me nearly 6 months to wean off sifrol so hang in there.Please feel free to message me and I will give u his details.
Stress doesn't cause RLS and like everything to do with our bodies it can make it worse .Our minds and bodies are intrinsically connected. The CBT will address your thought patterns and psychological behaviours in relation to RLS. You may have negative thoughts that are impacting your mental health. It won't lesson the physical symptoms at all.
Hi restless in LondonI have had RLS for nearly 40 years and during that time I honestly have tried EVERY suggestion made to me by friends, medical profession, alternative people,. Dieticians and on and on ......
And in my 40 years experience sadly nothing works long term apart from drugs.
Also I have learnt that every single person has a different make up so what works for one person doesn't necessarily work for anyone else.
I Get RLS if I am stressed and if I am not stressed.
I Get RLS if I run miles or if I sit all day.
If I drink wine. Or if I don't drink wine.
Also I have learnt not to get too excited when something works as 6 months later it stops working.
But I tell you what does keep us going and that is hope that something will work for you personally & always if possible keeping a sense of humour.
Everything is worth a try.
I inherited RLS from my father & the neurologists say that is why I will probably find nothing will get rid of the darn thing.
Ah but have not tried CBD OIL. Perhaps I should try it????
Very best of luck.
And finally finding Joolsg, Sue & all you lovely people who UNDERSTAND what it is like to have RLS has made me at last feel positive & at last I have SUPPORT.
I know just what you mean about the support, it's such a blessing. I haven't tried CBD oil either, I've heard mixed result from people who get it on line.
I also inherited restless legs from PA he didnt know of course what it was just that he couldnt sleep because of his legs he used to go downstairs and have two asprin a cup of tea and a cigarette quite a few of us, he had 10 children,now suffer with RLs one sister just told me of a miracle cure called pramipexole i told her not to take it but no notice taken xx
10 children. Wow! I go downstairs & have a cup of tea but not the cigarette but back in the day everyone smoked.My father actually had rheumatoid arthritis which is another RLS trigger but as you say in those days our parents didn't know about RLS.
I just remember my mother saying my father "felt restless" & needed to walk about but no one knew why.
My sleep doc referred me to a clinical psychologist who specializes in insomnia using CBT tx. We had video appointments approximately every 3-6 weeks, more often in the beginning and less often later on. We talked about changes I could make in my sleep hygiene, bedtime habits, and how to think about sleep time. He also recommended a couple self-help books (I am a reader person). Overtime I did make changes in my bedtime habits and in ways to think about or reframe my insomnia issues. I found that very helpful in improving my sleep routines and mental approach in dealing with poor sleep. I feel every little part of the whole sleep time experience plays a role in how I feel the next day. It alone is not a cure for RLS or any other cause of sleeplessness, but I definitely felt it helped that component of my overall sleep challenges.
With the insomnia. But, that was still a net positive for me. As a whole, I feel the quality of the sleep I do get has improved. Or, maybe more accurately, the quality of my sleep is less bad .
A LOT of doctors are under the misconception that CBT actually cures chronic illness. The ignorance is so blatant, it would be wise never to mention it to medical practitioners. I understand that some people find it helpful to talk about their sleep habits but all those tips can be found parroted all over the internet. Only you yourself can figure out which foods and medications are triggers and the sort of schedule that’s helpful to you, and in my opinion, that’s all you need. I would also add that the older you are, the less likely it is to help you in any way whatsoever. By now, you should know yourself quite well. The advocates of CBT tend to be so patronising I often find myself harbouring dangerous thoughts that certainly don’t help with the insomnia… But perhaps that’s just me, other people may be different in how they respond to suggestions. The things that help me are not found in any textbook.
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