Seeking RLS treatment

[kagbolu1]

Hello

I am suffering from symptoms that are indicative of RLS, Is there any where in UK where I can get treatment?

[sarah19902]

If you can try your best to out your symptoms into words I know the kind people of this site will help.

There are a number of other conditions which can be confused with RLS

[kagbolu1 in reply to sarah19902]

My symptoms are;

a) pain in my left leg that prevents me from sleep at night. I don't feel the pain during the day.

b) I have to continuously move my left leg during sleep to get temporary relief for say, 5 minutes.

c) This distrups my sleep and I wake up tired everyday.

Thanks

Kabir

[Hidden in reply to kagbolu1]

Hello Kabir

You don't have RLS. This sounds more like nerve pain.

If you're in the UK you need to go and see a General Practitioner, (GP) a doctor. The doctor can examine you to see what the problem is.

I am assuming your don't originate from an EU country.

I don't know what your situation is, but if you're in the UK legally, you will first need to register with a GP if you're not already registered.

If you are actually a UK citizen or have a Biometric Residence Permit this should be no problem. If you're here on some kind of temporary visa then you may have to pay,

Otherwise, I cannot advise you.

[Hidden]

Good morning. You can get some advice on dealing with RLS by coming on this site, which can be excellent.

Depending on how severe your RLS is, you can explore various non medical remedies which can be helpful. If it's severe then there is medical treatment.

Medical treatment is found in the usual way, by going to your GP in the first instance. Your GP may then, or may not refer you to a neurologist. This is essential as medical treatment involves getting a prescription for medicines, some of which are controlled substances.

I have to warn you that RLS isn't a condition that GPs or even neurologists are particularly knowledgeable about. I also have to warn you that seeing a NHS neurologist can take months. RLS is not seen as urgent. It's therefore a bit of a necessity to find out as much as you can for yourself about the condition. This is a good place to start.

The first thing you, your GP or a neurologist needs to do is confirm that you do have RLS. There are other conditions that cause similar symptoms. It's also useful to establish if the RLS is "primary idiopathic" or "secondary".

Primary RLS is a complex genetic predisposition, which is affected by other factors. There is NO cure. Treatment aims to relieve symptoms.

Secondary RLS is symptoms caused by an another underlying condition. Treatment is aimed at the underlying condition. Depending on the underlying condition, treatment may also be needed to relieve symptoms.

The diagnosis of RLS is based on a set of 5 criteria. If your symptoms and situation match ALL 5 of these, then you have RLS. If there's even one you don't match, then you don't have RLS. If you do have RLS then a doctor may carry out some tests to see if there's any underlying causes.

Here is a link to the 5 criteria.

irlssg.org/diagnostic-crite...

Underlying conditions that can lead to the symptom. are

iron deficiency anaemia

diabetes

hypothyroidism

peripheral neuropathy. particularly small fibre neuropathy

celiacs disease.

kidney failure

In the meantime, if you do think you have RLS then there are several things you can consider.

There are various deficiencies that can affect symptoms, These include deficiencies of vitamins D and B12, magnesium and potassium.

Increasing dietary intake of these or taking supplements of these can improve symptoms if you have a deficiency. If you don't they won't.

You should be careful of taking potassium if you have heart or kidney disease.

Iron can be a major factor in RLS. If there is a deficiency of iron in the brain, this can cause RLS, in some cases. This can occur even if there is no blood iron deficiency. This can be tested if you have a blood test for Ferritin.

Ferritin is usually tested for RLS as it indicates the possibility of low brain iron. If you have this test, a doctor may tell you it's normal. "Normal" is anything over 20, however for RLS 50 is an absolute minimum and some RLS experts say it should be at least 100. You need to know the number then, not just that it's "normal". Many RLS sufferers get relief from raising their Ferritin level.

It's a good idea to have the test before taking iron and it's not easy to raise Ferritin levels.

Also in the meantime, IF you do gave RLS according to the 5 criteria, you can look at if there are any "triggers". These are things which make RLS worse if you have the predisposition.

There are some medicines which can make RLS worse. Some antidepressants, some antacids, some blood pressure medicines, some anti sickness medicines and anything with antihistamines in e.g. cough medicine. Some sleep remedies e.g. melatonin.

Alcohol is a trigger, and for some caffeine makes RLS worse, for some caffeine relieves symptoms!

Diet may be a factor including refined sugar, some food additives, gluten or lactose intolerance.

Some people find relief from doing leg exercises (stretches), hot baths works for some, makes it worse for others. Magnesium cream, vibration pads and so on. People on here will suggest all sorts of things from the wise to the whacky!

CBD oil has become quite popular for all sorts of conditions. Some RLS sufferers say it works. Finding a CBD product that is both legal and works, in the UK is a minefield. Some people take illegal cannabis.

I have to say that RLS is a condition that traditional medicine, largely, fails to manage. It can be quite distressing and can leave people vulnerable to all sorts of claims that various remedies can help, when actually they either can't or may even be dangerous or just expensive. Problematically, some of them appear to work, but it is by placebo effect, which can be very strong.

If you do go to a GP or a neurologist and they do confirm (particularly idiopathic) RLS and give a prescription you need to be aware that the drugs traditionally prescribed aren't necessarily the best and doctors may not be either up to date or be aware of the NHS national guidelines for the management of RLS.

Here is a link to the guidelines, which are a bit dated, due for review next year. The drug treatments aren't quite up to date.

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

Doctors can be particularly, " less than 100%", as regards drugs. The traditional first line treatment for RLS is a "dopamine agonist", but they often fail to warn people of the potentially very serious consequences of these. They can be initially very effective, but can turn extremely nasty.

RLS experts ( there aren't really any reputable ones in the UK), tend now to prescribe an alpha2delta ligand for RLS. These do not have the same consequences and significantly are also used for neuropathy which sometimes occurs alongside RLS.

That's a lot to digest, I hope in fact you don't have RLS and that whatever you have is not serious, can be treated.

Here is a link you can follow for more information, if you scroll down there is a severity rating scale. How severe is your RLS, if you have it.

rls-uk.org/diagnosis

RLS can be managed, but it is largely a matter of self management, knowing a lot and knowing how to use health services appropriately and with a little scepticism.

[Joolsg in reply to Hidden]

Excellent advice Manerva, as usual. 👏

[Joolsg]

Manerva has given you excellent, detailed advice. I don’t think there’s anything left to add.

[Jane190]

Have you tried going to the doctor

[Sassy-here]

I used Pramiprexole and after years it bounced back on me and caused me years of misery in the way of tremors , nerve pain and horrible pain. I wanted to kill myself and was home bound for years. I am still suffering with drawl and if I knew how to sue that company I would!

[batesm0t3l]

Go and see your GP and ask them if you can try Coedine to manage the pain. Refer to the Treatment option under this : nhs.uk/conditions/restless-...