RLS on steroids down one side of my body

[Murdochsmama]

Hi everyone,

I have had RLS since I was a teenager and am now in my 50s. I have long periods of time where I don't have any symptoms (thank God!) However, there are times when it feels as if there's a long cord or nerve from just under my ear down into my shoulder blade and then on that same side of my body, from the middle of my butt cheek to my feet. It's as if someone is pulling it as tight as can be and plucking it like a guitar string. It is truly like RLS only on steroids! It is maddening! Doctors have no idea what I'm talking about. I've had MRIs, nerve and muscle testing, biopsies, massage, etc. I stretch and roll on an Airrosti roller. I've tried mindfulness, but I can't hold still long enough for that to be effective. I think I would just feel better knowing that someone out there suffers from this too. Not that I wish it on anyone. Anyone out there know what I'm talking about?

[Joolsg]

Absolutely.RLS is very difficult to describe, which is why it can take years to diagnose it.

Look up rls.org and RLSUK website. This site is UK based and run by RLS-UK.

As you only get RLS occasionally, you can take codeine when it happens.

In the meantime, get full panel morning, fasting blood test and ensure serum iron is above 60, serum ferritin above 200.

Most RLS can be resolved by raising brain iron via iron pills/infusions.

[Murdochsmama in reply to Joolsg]

Thank you!! So when I describe those sensations you can relate personally? I will definitely check out the website. Thank you so much!

[Joolsg in reply to Murdochsmama]

I did a video for the BBC in which I described RLS as being wound up, wound up on a cog until its as tight as possible. And then all that pent up energy cannot be released. It's like my whole body is screaming internally and needs to release the pent up energy. But it doesn't happen.Children get RLS. Can you imagine?.They don't have the words to describe their torture.

Someone else described it as being tightly bound in cloth and buried in a tiny box, unable to move.

There are many descriptions, ants crawling through your veins. Tingling, fizzing, jerking.

[SueJohnson in reply to Murdochsmama]

To elaborate on what Joolsg said: get a full iron panel blood test. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before. 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.

[Murdochsmama in reply to SueJohnson]

I appreciate both of you helping me on this!