Help .

I started having rls symptoms about a month ago .They were mild but constant through out the day.After 3-4 of having them they went away for 20 days but now they are back and are now also in my shoulders .I visited a neurologist about them but he told me that since I am young (17) it's probably because of the lack of movement due to the current lockdown.My question is : does the thesis of the neurologist I visited hold any weight or should I look for other causes.The results of my blood test are normal except for magnesium which is low and I don't know about my ferritin levels.

[agapepilgrim]

Low magnesium can cause RLS Does with me. I must take 409- 800 mg a day

[Hidden in reply to agapepilgrim]

Thanks for the input.Will if increasing my magnesium intake helps.

[Hidden]

Hi, sorry to hear you're having some symptoms. It is obvious that you're having some experience which concerns you enough that you have seen a neurologist and you would like to know what they're symptoms of and what can be done about them.

From what you write it's not at all clear that you have RLS. The neurologist didn't confirm that diagnosis. Also, altnough you say you have symptoms you don't give any description of them so it's not possible to say what they are.

There are diagnostic criteria for RLS and in order for the RLS diagnosis to be confirmed your symptoms have to match ALL the criteria.

From what you do say about the pattern of your symptoms i.e. when and where they occur, it doesn't sound as if you do have RLS.

You can compare your symptoms to the criteria for yourself by following the link below.

irlssg.org/diagnostic-criteria

As to whether your symptoms are due to lack of movement, since you don't describe them it's not possible to say. You'd have to say what exactly they feel like and what if anything makes them worse, what makes them better.

[Hidden in reply to Hidden]

It feels like electricity in my calves and deltoids when resting which is relieved by movement and stretching.It's present through out the day and is amplified at night especially in the deltoids.If I exercise through out the day I get some relief.I think it's triggered by stress because when I am stressed it gets worse

[Hidden in reply to Hidden]

This sounds, to some extent, like RLS. I'm afraid the descriptions in the diagnostic criteria are a little ambiguous. Some RLS sufferers do describe the sensation as being like electricity.

The principal defining characteristic of RLS is the "urge to move". This is difficult to describe in itself, but it is NOT the same as feeling the need to change position to ease discomfort and NOT the same as feeling nervous.

It's true that moving can relieve the symptoms and exercises can too.

It's possibly not typical of mild RLS for it to occur during the day, but it can do, but it is worse at night, which is typical.

If you are exercising, despite the lockdown, I find it difficult to accept that your symptoms are due to "lack of movement". It is possible to suffer some effects from not moving, but it is usually significant immobility e.g. being bedfast.

Unfortunately, although I'm not qualified to judge although neurologists often say someone has RLS when actually they don't, the one you saw may be doing the opposite. This isn't at all helpful, I'm sorry.

RLS like symptoms can occur for other reasons and one of them is stress. Certainly, stress can cause physical symptoms, but also stress can make RLS worse.

I'm afraid the neurologist you saw was of little help. I imagine that you were referred to the neurologist by a GP or Primary Care Practitioner. If so I guess they must have suspected something. Referrals to a specialist in the UK are not done lightly.

I note you've had some tests, not sure how comprehensive these were, but apparently nothing unusual apart from low magnesium.

Ferritin is not actually diagnostic of RLS. Having a ferritin level below 50ug/L does not mean someone has RLS. However, IF someone DOES have RLS and a ferritin that low then it does mean they may benefit from raising it. Anything above 12ug/L is considered "normal".

What's often done when some conditions are suspected is to give the treatment to see if it works. E.g. if someone is suspected of having angina, they're give the relevant medication. If it works, then it's likely they have angina.

This can be done with RLS, but this would need the cooperation of a doctor and it's also not quite so simple, definitive or advisable.

In the case of RLS it might be a one off dose of L Dopa. However, as I say this is not a great idea because I'd describe this as a nasty drug and nobody responsible would actually prescribe it as a RLS treatment.

You could, for yourself try.the various non-medical remedies for RLS, but I'd say you probably won't get any immediate result. It is desirable, though, that if they do work, then continuing these rather than taking any drug would be much better.

Exercise is a good one, especially stretches. Stress relieving strategies will help, (whether you have RLS or not).

An obvious supplement you could take is magnesium. An iron supplement may help, in the long term. You could also try taking vitamin B12 and especially vitamin D. Celery juice (tablets) is also a good idea.

You could read through other posts on here to see what others suggest. but be careful - some suggestions aren't well informed, some potentially dangerous.

If, in the end, if you get no relief, then you may have to go back to a doctor.

[Hidden in reply to Hidden]

So you are saying that my discomfort could be caused by something else?

[Hidden in reply to Hidden]

It does sound like RLS, but that needs to be confirmed as I suggested.

It doesn't sound like your symptoms are due to "lack of movement". Not only because you don't seem to have a lack pf mobility but also because I wouldn't expect those symptoms from a lack of movement anyway.

[Hidden in reply to Hidden]

Thanks for the answer.

[LotteM]

Manerva has written all that I would have written - and more. Personally I wouldn't feel too restrictive about a one-off or two-off dose of L-dopa. Until a few years ago, L-dopa and related medicines ( dopamime agonists, DAs) were used as a diagnostic criterion; they usually help instantaneously after they have been absorbed by the body, which takes less than an hour.

If you're in the US, you may want to contact the RLS foundation (RLS.org) to ask for a knowledgeable doctor nearby or in your state; they keep a list. A knowledgeable doctor may give you a second opinion re the diagnosis. That is important, as especially your daytime symptoms, and at your age, are not typical. You don't want to treat what you don't have. Especially, don't rule out stress-induced effects.

Meanwhile, take your time to read and educate yourself. Rls.org has great info, but to get access to all you'd have to become a member. Rls-uk.org, the UK counterpart, has less but similarly good info and it is all freely accessible.

One final question, do you tale other medicines? Especially antihistamines (it is the season in the Northern hemisphere!) and antidepressants are infamous for inducing and/or worsening RLS symptoms. But there are more. Rls-uk.org has a list, rls-help.org a very comprehensive one. All these three websites are reliable.

[Hidden in reply to LotteM]

Thanks for the input.I don't live in the US so I can't really benefit from the doctor's list.I don't take any medicine beside supplements.I don't know what triggers my rls during the day but if I had to guess it's either anxiety or sugar because god knows I get my fair share of both of them.Right now I dont really feel it in my legs but I do in my shoulders (in the deltoid area) .Massaging it is a great relief.

[Trikkinoy]

Did they check your ferritin levels? You need to have this checked as part of an iron profile.

[Hidden]

On my most recent blood test it says nothing about ferritin.Only shows my iron which is pretty high.

[Trikkinoy in reply to Hidden]

Have them check your ferritin. My iron was fine, but my Ferritin was 26 and it needs to be above 100 to help with RLS and it will help show why you are having symptoms. I have even heard recently now they are saying they want it to be above 300. If they find you have RLS i am going to save you ALOT of heartache now and tell you what ever you do DO NOT get on a DA (dopamine agonist). This may help initially, but it will turn on you and cause you to go into augmentation. Your symptoms will be worse than they were. If i was you i would arm yourself with literature before going back to the doctor showing what helps and what does not help RLS. I am going on 1 1/2 years of hell because I did not know this information. I am finally almost off the DA's which I should be fully off by next Monday. The only thing that has really helped my symptoms is an opioid. Trying to get off the DA's is like going through HELL.

[Hidden in reply to Trikkinoy]

Thanks for the heada up.