Does anyone experience rsl and arms just had the most horrendous night exhausted
Restless arms : Does anyone experience... - Restless Legs Syn...
Restless arms
Written by
Seak
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44 Replies
•
Hello Seak
I am so sorry you are suffering from restless arms.
I have had that in the past. along with restless legs and I know how awful it can be.
I have medication that covers this. I had a lot of help and advice from this site to reach the stage I'm at now.
Couple of questions. How long have you had this? Do you suffer from restless legs and are you taking any medication for it?
Jane 😊
Been suffering for 30 plus years arms and legs all I take is magnesium had relief from high dose gaberpentin which I was taking for spinal issues but no longer taking
Oh dear, why did you stop the Gaberpentin? What are you planning to do going forward?
Do you take ropinirole or pramipexole? If you do you may be augmenting.
No I do not take them what should I ask my doctor for
Why did you stop the gabapentin?
Hi I feel for you what a horrible thing RLS is. I also get it in my arms it's he'll.This is true if I'm withdrawing from opioid I literally have to move my legs every 20/30 seconds when I'm in bed tossing turning all night.The reason I'm replying is if you get the freeze gel footballers use on their legs in winter and cover your arms/legs it stopped it but only for an hour or so so you have to keep applying it
It honestly works good luck
As you're not taking any meds for RLS you should ask for a full panel fasting blood test and get your serum ferritin levels above 100, preferably 200 as that resolves the majority of RLS. Many doctors will now refer for iron infusions to raise levels faster and avoid months of suffering while you wait for oral iron to work. Let us know your blood results and we can give further guidance as most UK GPs are unaware of the link to low brain iron. They will say your levels are "normal" but for RLS we have to have much higher levels.
Also check your other meds as many can trigger RLS. The main culprits are anti depressants, sedating anti histamines, statins, beta blockers and PPI meds. There are safer alternatives that can be discussed with your GP.
To elaborate of what Joolsg said Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. As she said when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and as she said we can give you advice.
Thanks so much for all your advise
Meanwhile 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, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
And as Joolsg said 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.
one thing I’d like to mention that has helped me a bit with RLS is stress management !
I found that it is helpful to banish stressful thoughts such as work, money etc. from your bedtime. I keep saying to myself that these stressful topics will get full attention in the morning!
Great idea.
I take thyroxine use a hrt patch take turmeric and omega oil capsules
• in reply toSeak
I believe the HRT is giving you the restless arms. Also, in terms of your spinal issues, if the spinal cord is involved, especially in the cervical area, then that too can contribute to your restless arms. Lastly, it seems that people with thyroid disease, especially if not properly controlled, can have more severe RLS. I recommend taking 25 to 50mg of ferrous bisglycinate on an empty stomach about an hour or two before bed. It’s always better if you stop all eating after around 7:30pm. If you’re like me, as well as several others, the iron will stop the RLS in one hour.
You can’t be pre-disposed to RLS and take HRT, you just can’t. Please talk to your doctor about this. They usually recommend weening off the HRT and if they don’t then do research and decide for yourself if you want to go slow. The sad thing is women will experience hot flashes after the HRT which can trigger short-lived RLS as well. They then believe stopping the HRT isn’t making any difference, however it is.
I agree with SalemLake. HRT made my RLS unbearable.
But I had rls long before I started hrt ?
• in reply toSeak
Do you think the HRT might be making the RLS worse? A lot of us has had mild RLS since we were young, but then it got worse later in life. My RLS was much worse when I was taking Melatonin, as well as progesterone cream. Here is someone who has had RLS for a long time, but realized estrogen was making it worse:
mantelJoolsg2 years agoHave stopped the Evorel. Absolutely convinced it was the culprit . Tramadol and Lyrica have kept my symptoms under control for a few years now since I had to stop taking Ropinirole. Within 10 days of starting Evorel my RLS symptoms were as bad as when I went cold turkey stopping the Ropinirole overnight. I had such bad rls when I was pregnant that i felt suicidal . At the time I did not know what it was and never knew there were other people with the same condition. I just thought I was weird and didn't have the vocabulary to articulate how it felt to a doctor. My youngest was at primary school when I happened to see a documentary about the Papworth sleep centre and there was someone with the same problem . I went to see my GP and luckily she was on the ball and had heard about a Parkinson's disease drug that was helping RLS sufferers . To me it was a miracle , I could not believe the problem I had had on and off since I was very young disappeared almost overnight. It was totally under control for 15 years until suddenly it wasn't working anymore . Against all the advice I just stopped taking it . I had 3 weeks of absolute hell where I spent night after night walking circuits of the downstairs rooms but I got it out of the way fairly quickly and started Tramadol and Lyrica and apart from the odd blip they have been working well. I am now convinced oestrogen is a major trigger for my RLS .It started becoming a problem in puberty and escalated during both pregnancies and experts thing this is because of the increase of oestrogen production and within 5 days of using oestrogen patches it became unbearable again. Re: menopause symptoms unfortunately Lyrical has not helped with the hot flushes and have been taking it for about 4 years but they do seem to be less frequent now, so hopefully they will disappear on their own soon. Thank you for your advice
I had RLS before also. HRT made it a lot worse. Did your RLS get worse after HRT? If not, then it isn’t a problem for you. That would be good. I hope you find some relief.
Seak, I just read what you wrote to SalemLake. There are so many meds I would like to be able to take, or foods to be able to eat, or drinks to be able to drink. As if RLS isn’t bad enough, we have to suffer through other ailments that can’t be treated because of the adverse reaction on our RLS. I find it exhausting.
good morning Seak. I’ve had RLS for over 40 years and over the past 3 years I’ve, like you, experienced it in my wrists, arms and shoulders and it’s horrible. Your whole body goes into spasms, legs jumping arms waving and rolling shoulders, it looks like you are doing a voodoo dance, if it wasn’t so tragic it would be funny. I really feel for you one reducing Ropinirole which doesn’t make it any easier. There is some good advice in the other replies and Joolsg is one that crops up time and time again but you may have to be very forceful requesting the blood test as my Doctor said mine was fine and although I gave him the paperwork relating to Ferritin levels one not sure he took notice. I sometimes think doctors are in a (I know best I’m the professional here) mode.
Good luck and I do wish you well
yes I’ve experienced rls and arms. In fact I find the ‘restless arms’ slightly more unpleasant. I take ropinarole which does help - 1.5/2mg a day usually 0.5mg in the afternoon and 1mg before I go to bed. I find distraction techniques can help if I’m not sleeping well - I’m an artist/ illustrator and will study some of my works and it eases, sometimes stops the RLS strangely.
Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Have you always had it in your arms while on ropinirole?
I do not take ropinirole
My reply was to Huguenot14
Yes I get RLS in legs regularly and sometimes also in my arms which is horrible. At the moment I just take codeine which gives limited help, but sometimes cold water helps for arms - I just pour it on (I keep a bottleful in the bathroom) and go back to bed with wet limbs!
Sadly yes I do. I empathise.
hi all. Yes I frequently get it in my lower arms, wrists and strangely also my fingers - and find it worse then my legs in sensation. Since looking at past posts I now know the beta blockers I take (only 2.5 bisoprolol) since my heart attack in 2018 makes RLS worse and Calcium Channel Blockers give me serious heart palatations and are listed as a ‘no go’ medications for me does anyone know of an alternative? I have serious spinal problems cervical and lumber stenosis’s plus Cauda Equina syndrome and have been fighting for Beup patches for months now for pain to no avail. I have a GP appt next week so will be adding the advice re the patches being a poss for RLS too. Don’t hold out much hope tho. I think of all you other sufferers nightly when I’m pacing the floor. Good wishes.
and hands!
Especially with augmentation. Can be rather painful as well.Cyrrently off requip after nearly 40 years. Taking 2400mg Gabapentin in 4 doses daily. With otc pain killers in between doses...pain is a trigger for me. No more RLS....JUST sleepy and weak all the time. Ill take sleepie and weak!
Truthsword, hi, what is OTC pain killer? Did you state in your comment, that you have no more RLS and can sleep normaly?
Tylenol and advil. Yes i have to take 2400mg gabapentin. Starting at 2,4,6,8 pm. The sude effects are very acid mouth, gas, sores in mouth. Eyes burn,.....but i sleep !
An adendum; unless it has been a stressful day. Then i have to soak in .a tub of mgso4 epsom salts, or take tramadol, of i have it.
Yes, i have it often, and currently it seems I am leving the worst time of my life because of RLS on the legs, often combined with the arms. There are more than a month that I CANNOT sleep during the night. I keep my legs jumping, muscles contracting, the whole night. I use Perskindol Gel several times per night, but it hels me for short minutes only, Yesterday I made a first session of acupunctur as an alternative treatment. The especialist said, I will need at least 5 sessions to see some improvement on the symptomns. Tuesday I will go to the general doctor and ask her for a blood test. I considered also, that ‚maybe‘ Inhabe an exeed of vitamits, what could eventually trigger a stronger RLS. I understand you. I am also exhausted!!!
So very sorry.
Seak-yes, I think having it in your arms is even more miserable, if that is possible. No need for you to suffer this much though! Order red vein kratom powder, as tea, from kraatje.eu. It stops the rls in minutes and allows you to sleep. Use it as a backup or until you get your meds figured out.
Yes l get it in my arms hands and legs. I find in my hands is very hard to do anything except rubbing my hands and arms continuously,. It almost sends me crazy , when lm at that point l honestly feel its not worth living.
So sorry Seak, I have it in the legs the back one shoulder and the attached arm. Fortunately not all at the same time. Mine has been a progressive condition starting about 25 years ago with an annoyance in one leg. I've taken a variety of meds, and now using a narcotic. That usually helps enough but I also took gabapentin and horizont which did nothing for me. The only new advice I might give you is to try to get vigorous exercise daily. When I'm able to do that for one to two hours by either biking or playing pickleball I have much less of a problem. Good luck
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