Restless Legs Syndrome
10,330 members6,386 posts

Close to tears

Ive suffered from Rls as teen and never knew what it was, back then it was more of the achy feeling and urge to move my legs. Now at 26yrs I THINK im suffering a different form of Rls? The past 3 weeks sleep has been diffiult . I now notice or have the sensation of somwthing crawlings under my skin or ichy and twiching of random parts of my legs and sometimes arms, back and head. I feel it more on my legs than anything. I often scratch or rub the part itching out of reaction. It's almost 4am and after being on the Web and youtube all night with no relief ,I'm pretty sure this is my issue. I haven't went to any doctor yet ( out of fear they won't take it seriously) nor do I want to be on any meds regularly. The itching somewhat all over scares me because at first it didn't seem like rls. Also I think I have notice when staying the night at friends house I don't have this issue or at least it definitely isn't this bad to keep me up. Has anyone else notice possiblely the change of environment seems to lessen the symptoms? This is miserable. Has anyone found any home remedies that work?

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Hi Jflowers9, go to your doctor. You've done your homework and they will take you seriously, and if they don't then go to another doctor. Many doctors are a lot more clued up on RSL than they used to be. Cutting caffeine is the only home remedy which has worked for me, but only in combination with Gabapentin and Codeine. However, with diet it seems to be trial and error. Everyone has different trigger foods, and many aren’t affected by caffeine. We also all have different levels of RSL. Some may not need drugs but others do.

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James 14

I was actually shocked to see the notification that someone actually replied to my post. THANK YOU SO MUCH. That alone was super comforting. I will make an appointment with the doctor asap. Funny you say cut out caffeine because I've recently started drinking coffee again. Thanks for the tip!

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No worries, we've all been there. Good advice below on taking a checklist of what you want the doc to test for. I did this again with mine a few months back to see if ferritin levels had changed. Best of luck with it.

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Definitely go see the doc. What have you got to lose? I suffer rls too but it seems to have disappeared recently yeehah. That said, my husband tells me it's like I'm doing the hokey cokey at night the way my legs thrash about so maybe it's not gone but I'm sleeping through it, which is still a bonus. Try tonic water as the quinine in it helps. A glass before bed works, even if you have to add a little gin 😛

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Hmmmmm. They say alcohol makes RLS worse...

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Hi there, Jflowers9,

Have you had your ferritin levels checked out? For RLS sufferers the level should be 70 - 100 which is higher than for patients without RLS. If you are in the UK please visit rls-uk.org if you have not done so already. On the website there is a section for Medical Professionals rls-uk.org/professional-res... which you may like to point out to your doctor if he/she does not know much if anything about RLS. Often by the time a patient makes an appointment they know much more about RLS than their doctor because of doing research and joining a forum.

Some triggers for RLS are caffeine, alcohol, dairy/gluten for some sufferers and some OTC medications: rls-uk.org/treatment/ Take a look at Medications to Avoid in the treatment section.

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Hi Jflowers- good on you for checking things out.

What medications are you on?

Are you taking any triggers- alcohol, raising agents in biscuits etc , high salt foods ( crisps etc) sugar substitutes and so on - keeping a food diary can be helpful - and shows a Dr how serious you are.

If it's high summer wherever you are , you could be affected by the heat- a lot of people are suffering from that at present. - also avoid leggings etc which could cause heat itch.

Sorry to say there is not enough quinine in tonic water to be any use- but I do like the fizz.😊

200 mg of magnesium citrate in the evening is worth trying - as also making up a mg oil - epsom salts and water in equal volumes- rub on legs.

Good luck with all that.

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HI Jflowers9

I've suffered from RLS since I was born, but only discovered that's what it was about 8 years ago. I've always had the itchy/creepy crawly sensation in my upper legs, which makes you twitch and jump. Other than thumping my legs I haven't found a natural remedy! Caffeine and alcohol aren't triggers for me - I certainly wasn't using either of those as a child! The only thing that's got rid of RLS for me (more or less) is Tramadol, but if you can find something natural that would be great. However, if you can't and you need a drug like Tramadol then accept the help, as the relief of not suffering is so great. You wouldn't tell an insulin-dependent diabetic to stop depending on insulin and find something natural to help, so why should we be made to feel that we're not worthy of medical help?

Good luck and let us know how you get on with your GP. Definitely take the information about RLS with you, as there is still a lot of ignorance of our condition amongst GPs. Mine recently said to me "well you can always get up and walk around"!! I did respond that that's not what you want to be doing at 3 or 4 am when you want to sleep, but on the basis of her initial response they really don't take it seriously enough unless they've suffered from it.

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RLS is characterised by an urge to move the legs in response to the sensation and a (very) temporary alleviation of symptoms upon movement. Your description of the crawlings under your skin sounds quite RLS-like but not so much the ichiness all over. And you don't mention the urge-to-move response which suggests it may not be RLS.

I have not found that a change in environment has a particularly strong impact on the symptoms but it is certainly not beyond the bounds of possibility. Many people report that distraction is very effective - an absorbing puzzle or TV programme.

Raising iron levels (if your serum ferritin levels are low - you can get this tested at a GP surgery - you need the actual figure - not just to be told you are normal) is a very effective treatment for many sufferers. There are also many dietary changes that can help - eliminating coffee and sugar (ice cream is particularly bad for many) and alcohol, which is bad for almost all RLS sufferers, after midday can be helpful. You should check to make sure you are not taking any substances that may make the condition worse (eg anti-histamines, anti-emetics etc). More restrictive dietary regimes help many - fodmap, low chem, ketogenic, low oxalyc etc etc.

Best of luck.

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involuntarydancer, itching (under the skin) is one of the best ways I can think of to describe the sensations I get - like my muscles are itching. I don't know if jflowers9 was meaning his/her skin itself was itchy?

I have also found that a change of scene can alter my RLS, with no symptoms at all until I return home. Could be distraction, but I found once that when I was away for 21 days when I was 16 I had no symptoms whatsoever until I got back. However, a change of scene can also exacerbate it!

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Thank you all for your advice. Today has been a major struggle with the lack of sleep and trying to work. Madlegs1 - The Tip you gave about the heat makes sense. I live in Florida and the heat is terrible right now. I am not currently taking any medications on a regular. Although being really tired I have stayed away from caffeine today to see if that helps tonight. I work out about 4 times a week regularly but will try to do it earlier from now on. Made my appoint with the doctor for this coming Friday and hopefully he can provide some insight as well. IF meds are needed, I am willing to take it just wanted to see if there were any alternatives prior to me going that route.

MumofSam - ahhh!! such a relief to read you have the same symptoms. I will confess I haven't shared this with anyone, not my Boyfriend, mom, sisters or friends not that they are judgmental by any means but I feel almost crazy describing what I am going through and the symptoms. So happy that I created an account here where people truly understand and help me feel sane. Google had so many other answers for my description of symptoms and I was starting to get a little worried (shame on you google!). I'll soon hear what my Doc has to say on the matter, in the meantime Ill be using the tips and tricks provided by all of you and continue to confirm my sanity by reading all the others RLS post on here.

-Jflowers (one night at a time)

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Hi, we've been taking a natural health supplement magnesium at night time and the rls symptoms seem to have gone, plus we're getting a better nights sleep. Other's here have mentioned they get relief taking this supplement. You could start at 200mg and increase by 100mg every few nights until you find your level. it can be taken long term without any issue and has other health benefits. The research is there on the benefits of magnesium for rls. it is vitally necessary for both normal muscle function and the function of the nervous system.

I'm also going to check out the food triggers as we never thought of this!

One other item, we have switched back to using a non-biological washing powder, like Fairy. I couldnt believe that after washing and drying a T shirt in the biological washing powder, I was getting an asthma type cough within 10 minutes of putting on the T shirt. Maybe the rls is also triggered by the sheets if they are washed in biological washing powder, which could explain being symptom free staying somewhere else?

You are on the right track!

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Hi,

RLS and depression, caffeine, alcohol and night time occurances

So I've been checking out more about magnesium deficiency and the research is there which should be of interest to anyone with rls and the side symptoms of depression.

This information comes from research in the US and is backed up by the National Health Institute and Office of Dietary Supplements according to livestrong.com. This is just one of the many links below. I've also cut out pieces from their articles so you don't have to wade through it!

livestrong.com/article/2878...

Summary:

Magnesium deficiency at its mildest levels can show up as RLS, depression, anxiety, sleep problems.

If left undetected, magnesium deficiency over the longer term can exacerbate to become tremors, severe depression, behavioural changes, migraines, heavy and painful menstrual periods.

All of the above are treatable with the right dosage of magnesium.........yes it IS quite incredible......magnesium deficiency is found across ALL of the psychiatric disorders for example.

Why is Magnesium so important for the body?

Magnesium is vital for the healthy function of enzymes, the nervous system, cells, as well as bones and muscles. 50% of the magnesium in the body goes to muscles and bones, the other 50% is a vital component in over 300 functions in the body.....so depletion has a major effect across so many of the body's functions.

The good news is that magnesium deficiency is treatable with supplementation and in some instances by injection. Diet can help.

Is Magnesium Deficiency common?

Magnesium deficiency is common in the US and therefore most of the developed world, but generally goes undetected.

Caffeine and alcohol can cause magnesium levels in the body to deplete. So also can problems with the gut or being on certain medications. Sweating profusely after work outs can flush the magnesium from your body causing deficiency. Women who suffer from heavy menstrual periods lose magnesium and can have any of the above symptoms.

Also, unless you are eating lots of green leafy vegetables, fish, nuts etc every day, there is a good chance your magnesium levels are low. If you drink a lot of coffee or alcohol, you are losing your magnesium.

What is the normal magnesium requirement for healthy living?

Per the Recommended Dietary Allowance, or RDA, men need 400 to 420 mg of dietary magnesium per day, while women need 310 to 320 mg daily.

These are the Recommended Daily Allowances for normal functioning. Higher limits are taken for specific requirements eg migraines, heavy periods, muscle tremors, rls, sleeplessness, depression.

RLS showing up at night time?????

Tight or heavy sheets can have the feet and toes pointing downwards is suggested by the research as a cause.

You can ask you doctor for a blood test for magnesium deficiency or speak with your pharmacist, natural health advisor. Also you will know from your own diet if you are meeting the 400mg per day normal level...obtained by eating lots of greens, fish, nuts. if not, and you have the above symptoms, then you are lower than the recommended daily average. Supplementing up to 400mg per day is in the normal range.

Hope this is helpful for you!

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Quinine was fantasic for my leg cramps but it was stopped being prescribed i was on it for years and i badly missed it too i was taking the max dose when first put on it can't just mind now what mg that was but found nearer to it being withdrawn that i could manage on 200mg daily which pleasently surprised me.

It never did silch for RLS though only for the leg cramps which were severe at times. Many nights i was up early hours stretching them out but praise God I'm not as bothered with them now.

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There are a few Magnesium tabs include zinc or calcium is there any one best to take or does it not matter so long as its magnesium?

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Would it be possible to let me know the mg of magnesium its best to take and is tablet form best too thank you Bluey.

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WOW, Bluey2017, so much really great information! Bottle of Cal-Mag Citrate now on my desk. Magnesium and Iron deficiency. Never heard of the biological washing powder problem and it's now on my radar. Brilliant!

RLS and depression - we all seem to be taking some meds for depression or anxiety. Which causes which?

Jflowers9 , good show with your query! You have triggered a really fantastic series of responses! I lived in the tropics for 40 years, but never made the connection between heat and RLS. I live in NH/US now and on those INSANE, desperate nights, I will now go outside in shorts and maybe a miracle will happen. I still sleep with a bar of soap in a thin sock (suggested in this forum) - who knows, I will try anything!

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Jflowers9

I do know and can fully relate to what your saying about a change of environment because i have experienced it for myself and wondered why..when i go into my cabin down back garden to sew on my machine the RLS never bothers me until i come back into the house and as soon as i sit down it starts..I've thought it very strange and wondered was it because i was concentrating on making something so my mind was very occupied but then I'm very unsure it's that because i crochet and it takes much concentrating following a pattern buy the RLS doesn't take any notice of that mind work.

It actually stops also my AO in my teeth only for it to return once i stop machine sewing and enter house again. Weird or what?

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