oh my!

[Ten64is]

clearly my RLS is nothing like the posts I have been reading thankfully.

I tend to have it materialise when sitting down in evenings and same with my husband so we get up and “ say “ I am just going to walk the estate” - the living room!

Other times it starts when I get into bed and remain sitting upright to read .fortunately for me a simple paracetamol works or soluble solpadeine.

Think I shall stop complaining now having read other views.

Good luck everyone with your meds

[SueJohnson]

Welcome to the forum. That's great that paracetamol and solpadeine work for you. Do they work for your husband?

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Ten64is in reply to SueJohnson]

thanks Sue . My husbands RLS goes when he is horizontal .he has a bigger problem with arthritic knees so he self medicates anyway as necessary so may be masking RLS.

I have mentioned to GP regarding my RLS but they just glossed over it.

It was difficult enough asking and obtaining X-ray for my cervical spondylosis never mind dictating a specific blood test! However I have taken notes and will keep it in mind.

Thank you kindly Sue

[SueJohnson in reply to Ten64is]

What does your husband self medicate with?

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't and print out the section on ferritin to show to him. You should be able to ask for a full panel blood test without his feeling you are dictating to him.

[Madlegs1]

Thanks for sharing your story. Any affliction that interferes with resting or relaxing is horrible.

In your case ,I have me doots that it is actually RLS. Generally solpadeine or paracetamol do not give relief to classical RLS.

However, it may well be that you have a form of peripheral neuropathy. The nerves in your body are reacting to something.

You could check any particular triggers, but there well may be a deeper cause. Keeping a food/ drink diary can be helpful for this.

If it was my wife ,I would get medical tests to eliminate early stages of other ailments.

I hope you get some satisfaction soon.

Do let us know how you get on.

[SueJohnson]

Since Madlegs1 thinks it might not be RLS - All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[GreyMaus]

Same here, Ten64is. Mine seems to come on more on the days when I've been standing a lot during the day in one place, or sitting in one place a long while eg at my laptop at work. Walking around does seem to relieve it and generally then by bedtime it's ok. I do take Pramipexole (0.088mg), originally at about 8pm and had done for a while, but noticed the symptoms were starting earlier in the evening so have to take it at 6pm these days. I still have some evenings when legs are restless though and have noticed it creeping up my body into back and arms occasionally. Also pains in my feet some nights. I've just made an appointment with my GP to try and come off the Pramipexole as concerned this could be the start of Augmentation. Massive sympathies for those who have it really badly - it's a horrible sensation and so difficult to describe to anyone who has never suffered. I liken mine to being plugged in at a socket and feeling the electricity buzzing through me!

[Louless9]

I get the same. I’m usually tired then and that’s when it starts