My legs are driving me mad

[Queeniz]

My legs wake me up in middle of the night & then I can’t go back to bed it’s sending me round the twist 😱

I have told my GP so many times over the last 5 yrs but I don’t get any help!!

Long story about my GP 🤐

[Hidden]

Hi Queeniz, I'm sorry to hear this.

In order to determine if you have RLS or PLMD (Periodic Limb Movement Disorder) can you say what it is that wakes you up? Is it that your legs are jerking or kicking or is it just an unpleasant sensation in your legs or that you feel a need to move them?

If you can't get back to bed again, what prevents you?

Do you get any of the symptoms that wake you up and prevent you getting back to sleep at any other time e.g. particularly just before you go to bed or when you first lie down to sleep?

It is terrible that your GP has been of no help. Is this because they don't agree that you have RLS or PLMD or do they agree, but still haven't offered any treatment?

Sorry to ask so many questions, but there is lots of informationm available from this forum, your answers will help decide what's most relevant to you.

You have come to the right place, this forum will help.

[Bruxelles in reply to Hidden]

Hallo Minerva,I haven’t heard of Periodic Limb Movements as opposed to Restless Leg Syndrome before. Could you tell me the difference please. Thankyou. I hope you are well, Bruxelles

[Hidden in reply to Bruxelles]

Thanks for your good wishes Bruxelles.

The term Periodic Limb Movement Disorder CPLMD) is used to describe two closely related conditions. PLMS is PLMD when Sleeping and PLMA is PLMD when awake.

PLMS is much much more common than PLMA which is said to be quite rare.

Both involve a characteristic pattern of involuntary limb movements which occur repetitively for a short period but frequently and regularly, e.g. up to every 20 seconds. Hence the term "periodic".

The difference between RLS and PLMD is that RLS is only usually experienced when awake. If it occurs during sleep, the sufferer will probably wake up and be aware of the symptoms.

PLMS, the most common form of PLMD ony occurs when asleep. Sufferers more often than not are unaware of the movements.. It is commonly stated that PLMS does NOT wake the sufferer up. However it does interfere with deep (slow wave) sleep. This means that many people with PLMS aren't even aware of it and it is often their partners that tell them.

It also means they may be feeling tired during the day and can't explain why. A lack of deep sleep also means that some of the "restorative" features of deep sleep are lacking, e.g. some cognitive processes and healing, growth or immunity.

The involuntary limb movements of PLMD are a defining characteristic of the condition, but they are NOT of RLS. There is no mention of such movements in the diagnostic criteria for RLS.

RLS is diagnosed by its symptoms only.

Sometimes PLMD is only confirmed by polysomnography in a sleep clinic.

In practice 80 - 90% of RLS sufferers have PLMS, although they may not be aware of it. Also, many RLS sufferers experience involuntary limb movements when awake. I experience these but when I discussed them with a neurologist we agreed that the movements I experience aren't typical of PLMD. I call it "twitching".

Really, there doesn't seem to be any real differences in the causes of RLS and PLMD or in their treatments. It seems the treatment for PLMD is the same as for RLS and there is far less mention of PLMD than RLS.

In terms of medications it is thought that dopamine agonists are slightly better for PLMD than ligands and vice versa for RLS.

Does this help?

[Bruxelles in reply to Hidden]

Hi Manerva, thankyou SO much for your very interesting and informative reply which I read quickly when I received it and have now had more time to reread it. I have also been on another site and will reply further tomorrow as I must get a couple of hours sleep now while I can. So goodnight for now and take care.

[Queeniz]

My legs jerking wakes me up & when I get up I can’t go back to bed cos my legs won’t stop moving, shaking etc even when I’m sitting on sofa

[Hidden in reply to Queeniz]

Its sounds as if you have both RLS and PLMD. 80 - 90% of people who have RLS also have PLMD. The remedies for both are similar.

If you are unable to convince your GP you have RLS/PLMD then you can refer them to the RLS diagnostic criteria.

The "urge to move" mentioned in the criteria can result in involuntary movements.

Here's a link to the criteria.

irlssg.org/diagnostic-criteria

If your GP is dismissive of the consequences of suffering RLS/PLMD you can refer them to this link.

cks.nice.org.uk/topics/rest...

If they don't take you seriously then your options are either submit a complaint or change doctors.

Your doctor should consider the following

A blood test for serum ferritin. If this is below 75ug/L then I'd suggest you start taking an oral iron supplement. Iron deficiency is a major causative factor in RLS/PLMD.

If you are taking any medications for anything, then they may be making your RLS worse. Antidepressants and sedating antihistamines are the main ones, but there are many others too. Avoiding these can improve your symptoms.

It is commonly known that alcohol, sugar, caffeine (for some) can make RLS worse. Different foods can make RLS worse in different people, try keeping a food diary.

There are medications for RLS as a last resort, the first treatment for RLS is preferably an alpha 2 delta ligand.

The alternative is a dopamine agonist, but these should be avoided if possible due to a high risk of major complications.

I suggest if your GP prescribes any medication that you check up on it thoroughly before taking any. GPs often don't warn you about complications.

As you live in the UK you can check the National Institute of Health Care Excellence (NICE) Clinical.Knowledge Summary (CKS) on restless legs. This is a NHS organisation that publishes guidance for GPs.

Here's a link

cks.nice.org.uk/topics/rest...

Most of what I've written os taken from this web site

The following link has a RLS severity rating scale(scroll down) which you can complete and show your GP.

rls-uk.org

It does sound as if yours is quite severe.

[Roblau]

This was copied from another post but is helping me, in addution I take Enzymedica digest gold enzymes with every meal and sleep very well now.. (TRIGGERS to be avoided: Anti-depressants, anti-histamines, artificial sweeteners and any foods with high sugar content, such as grapes, raisins, dates, apples, pears as well as margarine, mayonnaise and anything containing Soya Lecithin plus onions and garlic.

Supplements which may help: Slow-Release Iron, Magnesium, Turmeric, Vitamine B12 and D.

So, may I share with you what works for me and has been working for nearly a year: Combination Therapy: I take 0.28 mg of Prolonged Release Mirapex, 0.5 mg of Clonazepam and 2 Co-dydramol. I take one high strength Senokot in the evening for constipation.

I also fast from 11 pm till 1 pm the following day, which means I have my breakfast at lunchtime. My RLS is not perfect, but at night I put my head on my pillow and sleep like a baby, sometimes for 9 to 10 hours. Long may it last!)

[Tanker1]

Good responses already. You likely have PLMD and/or RLS. Ditch your GP and find a sleep doc, preferably a neurologist that specializes in sleep. Keep the faith: there are solutions its just not always easy to find them.