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Restless Legs Syndrome

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Hi, I just joined this community. I've had restlessness at night for quite some time. It comes and goes, some nights are worse than others, it wakes me up at night and I feel like I want to jump out of my skin. If I take 2 Advil it usually helps but I don't like taking too much of any medication. I always thought that it was because I exercised or ran too much that day and that's why I was having these feelings.Well I was recently diagnosed with Rhuematoid Arthritis, happy to finally have gotten a diagnosis after years of fatigue and flu symptoms, body aches, lack of energy daily...most doctors would ignore my symptoms. I finally found a great doctor who took me seriously. But now I'm thinking, does the restlessness at night have anything to do with my RA ?

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dancinginmysleep
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Hi and welcome to the community. I hope you find it helpful.

Firstly, please just check to make sure you really do have Restlees Legs Syndrome (RLS). Other conditions are often mistaken for it.

You can check this by comparing your symptoms to the recognised diagnostic criteria for RLS. Your symptoms must match ALL 5 criteria. If you don't match even one of these, then you probably don't have RLS. Here's a link to the criteria

irlssg.org/diagnostic-criteria

Please note the fifth criteria.

If you're sure you have RLS, when you can get to see a doctor ask for a blood test for iron, i.e. serum iron, transferrin and ferritin. RLS is strongly associated with an iron deficiency , but this is in the brain, not the blood and this can exist in the absence of iron deficiency anaemia.

The normal level of ferritin is anything above 12 ug/L, but 50% of RLS sufferers can benefit from raising it to at least 100ug/L. You can do this by taking an iron supplement.

You could try this in any event. A good way to do it is to take "gentle" iron, every other day (not daily) in the evening, on an empty stomach and swallow it with a glass of orange. This will enable it to be absorbed better.

When you can you could also ask for a blood test for vitamins B12 and D. RLS can be improved if you have a deficiency in these. Again, you can start taking them anyway, they will do no harm.

Advil, ibuprofen is of little use for RLS.. If you're not taking it for anything else then I wouldn't bother. It may have some placebo effect only.

A further thing you can do is to check if you are taking any other medication that might be making your RLS worse. These include -

Tricyclic and SSRI antidepressants.

Some antacids

Some anti-nausea medications

Some antihistamines

Beta blockers

If you're taking any of these, say what they are.

What are you taking for the RA?

Refined sugar, alcohol and caffeine ( for some) can also make RLS worse.

Some food, food additives can make RLS worse. Keep a diary of what you eat/ drink so that you can see if there's any pattern to the times when your RLS is worse or better.

Hopefully other members of the froum will suggest some other non-pharmaceutical remedies for RLS.

As regards medications, although ibuprofen and paracetamol aren't any use for RLS, opiates are. You can't get an appropriate opiate without a prescription and for RLS this isn't easy anyway. Especially when you may not be able to get to see a doctor. In which case paracetamol and codeine, which can be bought over the counter may give you some relief. This is not a solution however, just a temporary measure.

There are specific medications for RLS. They need prescribing. The first ones of choice are the alpha 2 delta ligands, that is either gabapentin or pregabalin. If these do not work then the next option is either a dopamine agonist or an opiate. Dopamine agonists are unfortunately not a long term solution.

Quite a few RLS sufferers say that cannabis can help with RLS. It depends on availability. There is some evidence that cannabis relieves pain and anxiety.

Some sufferers claim CBD oil works, but there are many different (expensive) products, all of which are different and there is no real evidence that any CBD oil is effective. My personal opinion is, I wouldn't bother.

I'm not aware that's a generally recognised link between RLS and RA. There are some claims that RLS is associated with inflammation or auto-immunity, which suggests a possible link. However, even if there were it won't help manage the RLS, anti-inflammatory agents have little effect.

That's just a starter, if you have more questions please ask.

DicCarlson profile image
DicCarlson

Apparently RA can cause increases in Glutamate - the excitable neurotransmitter and a key to insomnia in RLS. Ibuprofen is a known glutamate blocker, so this might be what is helping you. I take 1/2 of an ibuprofen caplet whenever I wake up and usually get back to sleep within an hour or so. BTW, I have a friend in complete remission from RA by following a very strict Ketogenic Diet. Her carb load is something like 30g/day - very strict.

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