Treatments and diagnosis

[IhaveRLS]

For as long as I can remember I’ve had RLS, I’ve never been diagnosed by a professional as never thought of it as a medical condition. However since all this covid19, I have found it unbearable. The other day my husband mentioned it to me. Since this has been pointed out to me, I feel like it’s worse. Anybody else suffering the same or is it just me? What treatments can be offered for this as I’ve never been prescribed anything for it. I feel a fake for taking a doctors appointment up just for this but feel it’s becoming so severe I can not have a good nights sleep.

[Kaarina Administrator]

Hi IhaveRLS

You may find this link helpful in diagnosing whether you have RLS: rls-uk.org/diagnosis

[Suberino]

You are not alone. There are plenty of us who can't remember the last time they had a good night's sleep! And you've come to the right place to get advice. I am going to leave the medication options / importance of finding out your iron levels to others who are more knowledgeable.

It's a very real condition and you should not feel like a fake if you go to your GP.

Unfortunately not many GPs are knowledgeable about the condition, so the help and advice you will get on this site will stand you in good stead. Sue

[Hidden]

RLS can be very severe and can cause a significant impact on health and quality of life. Hence you shouldn't think of it as being trivial and you are right to seek help with it.

I'm afraid I have to make you aware that medical practitioners, generally, are not particularly knowledgeable about RLS and how to treat it. You'll have to bear this in mind.

It's worth seeing a doctor about your RLS. They may be able to confirm the diagnosis. You can check this for your self by comparing your symptoms to the RLS diagnostic criteria.

Here s a link to these criteria. There are five

irlssg.org/diagnostic-criteria

Your symptoms must match all 5. Be aware your doctor may not be aware of these criteria.

The second reason it's a good idea to see a doctor is that they can carry out some blood tests.

The tests do not help diagnose RLS, they only identify some factors that might possibly be affecting it.

The most relevant tests are for serum iron, transferrin, ferritin and haemoglobin. This is because iron deficiency is a major factor in RLS. However, what your doctor may not realise is that this can be a problem for someone with RLS even if these results are "normal". Iron deficiency in RLS can occur despite there being no sign if iron deficiency anaemia.

Your ferritin level is particularly significant and simply put, for someone with RLS, if it's less than 100ug/L then it's probably too low.

The first treatment then, that should be considered for RLS is iron supplementation. If you ARE anaemic a prescription iron supplement. Otherwise, "Gentle iron" is less upsetting for your gut than prescription iron. In addition, it's been shown that taking it every OTHER day, not daily is more effective than daily. Taking it on an empty stomach with a glass of orange also makes it more effective.

You don't need your doctor's permission or prescription to do this, but it would be good to know your ferritin level.

I have to say that there's no guarantee that raising your ferritin level, (by taking iron) will help, there's a 50% chance that raising it to 100ug/L will help. It may also take months to achieve.

The second significant thing to do as regards RLS is to look at if there are any aggravating factors or "triggers", i.e. things that are making your RLS worse.

RLS quite often means making some lifestyle changes.

Alcohol and added sugar are known to make RLS worse along with any foods that have refined carbohydrates in them. A gluten free or lactose free diet may help of you have any intolerance for these. An "anti-inflammatory" diet may help.

If you're taking any medications at all, whether regularly or occasionally, these may be making your RLS worse. There's quite a long list of these and it's surprising what's on that list.

RLS can be improved by avoiding aggravating factors.

It's best if you can manage your RLS without resorting to any medication. There are effective medications for RLS, they all have problems associated with them and none are ideal.

Doctors tend to deal with things by prescribing a medication. If your doctor isn't very knowledgeable about RLS then he/she may not be famillar with what's better.

Most doctors are aware that there is a class of medicines that are specifically used for RLS and which are the first thing to be tried. These are called doapmine agonists (DAs), pramipexole , ropinirole or rotigotine. These are initially very effective for RLS, immediately!

What your doctor may not know and many are ignorant of is that these drugs carry a considerable risk of severe complications which may not necessarily ever occur, may take years to occur or may occur in months. The risk is high and common.

The main one is called "augmentation". It's possible, that like my doctor, yours has never heard of this.

For this reason, it's better to first try taking an alternative medication for RLS that doesn't cause augmentation. These are either gabapentin or pregabalin. Your doctor may have heard of these but may think they aren't prescribed for RLS. It's true they aren't "licensed" for RLS but they CAN be prescribed and they can be effective.

The doses of these are the same as for nerve pain (for which they are licensed) but for RLS it's once a day NOT 2 - 3 times a day. It takes 3 - 4 weeks for these to start working and you need a sufficient dose, doctors often underprescribe.

In order to help you with a consultation with a GP about your RLS, a GP who may not be knowledgable it's useful to have some authoritative information for them.

NHS doctors in the UK are given national guidlines on various conditions which are published by the National Institute for Health and Care Excellence. (NICE). There are NICE guidelines for the manabgment of RLS which tell your doctor what to do. You can refer your doctor to these guidelines They may not be aware of the guidelines for RLS, but they will be aware of NICE. Ignoring these guidelines would be very unwise for a UK doctor to do. I'm sure your doctor will find them helpful.

heres' a link to the guidelines, you can tell your doctor the web address.

cks.nice.org.uk/restless-le...

Sorry you're suffering RLS, it's better fo you can find out as much as you can about it for yourself. It really doesn't pay to rely on a doctors knowledge. You've come to the right place for information and support.

I hope this helps.

[IhaveRLS in reply to Hidden]

Wow this is an amazing read, I have hypothyroidism. I was also diagnosed with low VitD and anaemia a few years ago. They stopped my ferrous sulphate a few months ago. I’m now thinking this could be one of the triggers to the worsening of this problem. I’ve never noticed how bad it was affecting me until my husband pointed it out to me. It’s like I’m riding a bike in my sleep. I get horrendous pains in my legs and can’t keep still. I am constantly tired due to disturbed sleep. Thinking back to the past, I once thrashed about in bed that hard that I fell out of bed. I’ve woken up feeling like I’ve done a marathon. I will be seeking advice from my doctor soon. I’m due a blood test for my thyroid so will ask to add these bloods on to my form. I’m also due my U&Es. My lipids was high last time too. Could this be contributing to it? Thank you for this reply. It’s given me lots to think about and I can now see a little bit clearly and a pattern. When I was little, my mom used to tell me off for kicking my legs and thrashing about in bed. I now believe I’ve had this since a child.

[Hidden in reply to IhaveRLS]

It sounds like as well as having RLS, you also have PLMD, (Periodic Limb Movement Disorder). 80% of people with RLS also have PLMD. This can be experienced when awake, but typically happens when you're asleep. Many people may not be aware they have it.

It might be a good idea to see a sleep specialist. They can observe how bad your PLMD is. They might also detect if you have sleep apnoea, which is associated with RLS.

The treatment for RLS and PLMD is virtually the same.

"Secondary" RLS can be caused by iron deficiency anaemia and can respond well to iron supplementation, but simply correcting anaemia may not be sufficient.

BRAIN iron deficiency is associated with RLS. This also occurs in "primary" RLS which is inherited and occurs even if there is mo anaemia.

Ferritin is a way of measuring "stored" iron which even if anaemia is corrected can remain low. 50% of people with RLS can get symptom relief from raising ferritin to at least 100ug/L, " normal" is anything over 15!

As I say, just get an over the counter iron. Ferrous sulphate may be OK if you have anaemia, but not RLS.

Vitamin D can also relieve RLS if you have a deficiency along with vitamin B12 vitamin E and magnesium. All fairly inexpensive supplements.

If your U & E's are out of balance, particularly if you have low potassium, this can affect RLS.

I'm afraid hypothyroidism can affect RLS too.

It sounds like you have primary RLS, and all these things have exacerbated it.

[Joolsg]

Manerva has given you excellent and detailed advice. Raising ferritin should be your first step- raising levels above 100, preferably 300 resolves RLS for 50% of sufferers. Taking ferrous bisglycinate every other night raises levels faster than taking every night. IV iron infusion is the fastest way to do this if you can persuade your GP to refer you, or write direct to your local hospital Haematology department asking for an infusion, and show them the research to persuade them.

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

sleepmedres.org/m/journal/v...

You may find your local haematology department are very sympathetic and will agree to the iron infusion after reading the evidence.

If it doesn’t work, at least you will have tried it.