help

Hi all my symptoms lead me to believe I might have full body rls.

so tired don't know what to write.

I'm 42 yr old mum had kidney transplant 18 yrs ago and on various medication, also take low dose of fluxatine to shut brain off at night.

normally just my right arm and right leg effected tho never been diagnosed. but lately been neck shoulders and spine.

Please can anyone tell me how to go about helping myself: eg foods to avoids or that help anything please

thank you

18 Replies
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Hi Owl1 and welcome - if there is info to be found on RLS this is the best spot to get it, (imho).

Sorry that things are so bad, its terrible when the RLS is effecting the whole body.

Before looking treatment you would really need to see a Dr and get a diagnosis, (plus to rule out anything else that could be causing your symptoms).

If you do indeed have RLS then you may have to stop/change that antidepressant. Lots of drugs cause/exacerbate RLS and as such with your kidney problem some of those drugs could be making things worse as could the functioning of your kidneys.

In the interim cannabis could be used to ease your symptoms, (if you can get it).

Take care.

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thank you so much. I will go see a dr . I feel I live in the Dr's\hosp!!

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I hate going to Drs - I've been to countless appointments this past 3/4 years and sometimes like you say you feel you never leave a surgery/hospital. Its got to the stage where things have to be really bad before I can force myself to go.

Best of luck.

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Hi Owl1

If you had a kidney transplant 18 years ago you will be on a lot of medication. My close friend had severe RLS which went away completely once she had her kidney transplant.

When did the RLS symptoms start? I agree with Raffs that functioning of your kidneys and some of the meds you are on could be the culprits. Most SSRI anti depressants make RLS worse so try bupropion or Trazodone instead.

Other meds that worsen RLS include most anti histamines .

I know how horrible it is to have full body RLS and I hope you can find a solution by changing some of your meds.

Take care

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Thank you so much. That does help. When i went about my elbow which is where it started i had nerve testing done. Nothing so had acupuncture and that worked for couple yrs now i seem to get it right hand side of the body down my spine.

Just worried the dr is going to laugh at me!!

Gaynor (owl1)

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I can help in regards to the doctor-laughing-at-you bit. I've had times when my fears were confirmed and doctors did laugh at me, but more often that not I was pleasantly surprised and they listened. I think that's where the big test is that you're seeing a good doctor -- they do not laugh at you when you say something that sounds ludicrous even to you.

It was at either my first or second neurologist appointment that I was asked where my sensations were. I remember saying something about them sometimes being in one leg, sometimes the other, but mainly in both. As I was saying that I was thinking how ridiculous I sounded (even though it was true) and was therefore expecting to be laughed at. I was pleasantly surprised to be taken seriously.

So, just go in there and tell them what you feel. Nobody should laugh at you (or anybody). What we feel in our bodies is all too real, and to be laughed at is an insult. If you are laughed at (which I highly doubt), you're seeing the wrong doctor. I only have one thing to say to doctors who do that: "how about we reverse the roles here -- you'll explain your symptoms and I'll laugh. How would that make you feel??"

Hope this helps!

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Thank you . I've only just linked all the sensations together so i will make app tomorrow.

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You're so welcome! Doctors can be intimidating and we all could use some encouragement.

Kudos for making that "link"! In my opinion, that is the biggest hurdle. The next one is what to do about it, but for now congrats! Sorry you have to put up with this, though!

I hope you're able to get into the doctor soon!

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Should be able to they're pretty gd with me.

Thank you again ive also recently had my iron tablets lowered could just be a coincidence! At first thought my back problem due to my osteopenia .

Thank you for your support.

How are you?

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I'm taking it one day at a time, thanks for asking.

You mentioning the iron brings me to another point: Ferritin levels. Have you had this checked? These levels need to be higher than normal for those with RLS (75+). I'm not sure what the normal range is for those without RLS (which, by the way, just means not anaemic), but it must go pretty low considering I was "normal" at 56 back in March. Getting your ferritin levels checked is a blood test that your GP can order.

Where do you live? I'm in Norway (but from the US).

Keep us posted.

Good luck!

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Will do i live in uk. Think my dr saud it was 75+ was worried that it may course damage elsewhere x

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Yeah, that could be. I don't know all the science behind this stuff (especially since you have other conditions), so I'm sure your doctor knows what he's talking about.

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Just wondering...when you say you have "full body restless legs", maybe you have Akathisia. Akathisia means the inability to sit still. like Restless Legs, it can be caused be caused by antidepressants. One of the pharmaceutical companies in the U.S. knew their drug caused Akathisia and covered it up . A psychiatrist named Dr. Peter Breggin discovered their deception and testifies against the drug companies. I don`t know how much help this info is but their is more and more info online about various studies if you look under Akathisia. For instance B6 is supposed to be of some help. Their are also food triggers . I also take Pramipexole in order to sleep but hate how sleep it makes me feel in the daytime. It also makes me stiff and achy. I take .5mg at night. Does it affect anyone else this way?

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Thank you could be got dr app thursday so will see what she says

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Hi there and welcome , I too suffer with full body RLS and it's not much fun is it . Mine always starts in my lower back and bottom neck arms and legs everywhere .You have come to the right place with lots of advice and support . I'm also on a lot of meds and I need antidepressants for SAD in the winter months but that makes my RLS so bad I have to not take them . Take care 😇😇xxx

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Oh god poor you.

I will phone drs tomorrow x

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Let us know how you get on xx😇

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X

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