Hi newbie here help needed: Hello, I am... - Restless Legs Syn...

Restless Legs Syndrome
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Hi newbie here help needed

Babyhart
Babyhart
29 Replies

Hello, I am 39 years old, mum of two, nurse and fit and active. Keen runner and my life is being made miserable by RLS. Have has all my life and now recently it’s horrendous! Took myself off citalopram due to RLS being made worse now suffering with really low mood and tearful all the time.

Saw dr last week who was useless and said basically RLS don’t exist!! He gave me a sedative which made it a million times worse and had 2 hrs broken sleep.

Going back to Drs shortly in tears as at end of tether...

29 Replies
oldestnewest
Babyhart

Should of said take iron daily also

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raffs

That sedative is likely to have been an antihistimine judging by your response to it.

You have several options:

1 - Change your Dr. The (Wo)man obviously does't know his arse from his elbow.

2 - Look into Gentle Iron. Many here use it and get benefit from it, (check the search bar top right of page).

3 - Watch what you are ingesting - try eliminating caffeine, alcohol , gluten, sugar and see how things change.

4 - Many drugs as you have found out effect RLS double check what you are taking.

5 - Yoga/stretching can ease things.

6 - Hot baths/showers - a God send.

You could try researching Kratom and Cannabis as they can be very effective however legal issues abound.

It might be bad at the moment but things improve and there are plenty of very knowledgeable people on here that would put your Dr to shame!!

5 likes
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Babyhart
Babyhart
in reply to raffs

Thank you so much for your reply. I was prescribed Mirtazipine, but not going to take again. Take Feroglobin iron daily at mo. Going to go Drs now but fed up with their attitude with me!

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raffs
raffs
in reply to Babyhart

The Mirtazepine is an antidepressant, (albeit with good sedative properties), and as with many/most/ of them sends our legs crazy.

Can I ask is the low mood down to the RLS or some other long standing issue? There may be ways round it - if an RLS thing then hopefully by implementing some of the things I mentioned things would improve for you.

Might also be worth considering Vitamin D as the side effects of deficiency - which is very common in Ireland and UK and I would suppose any similar climates.

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Babyhart
Babyhart
in reply to raffs

Thank you I have been on antidepressants since age 15, long standing issue. Running and yoga helps but take low dose citalopram. RLS makes it worse 😩

Will look at vitamin D also

Just seen nurse at surgery...useless just told me to half my citalopram

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Rainbowflute

I don’t know if anyone else on here will agree with this but I’m on quinine to help restless legs and it does help me a lot! I also find when I am suffering with RLS that oramorph can ease things with 20-30mins so I can get to sleep! I also use essential oils a lot but I haven’t tried them for RLS. My book recommends Roman chamomile, Lavender and Valerian. Make sure you get them from a trustworthy source as most oils are diluted, I use Young Living which are the absolutely the purest but I would also use Tisserand (available on Amazon) give them a give them a try and hopefully you’ll find some relief! Xxx

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Windwalker
Windwalker
in reply to Babyhart

Babyhart, It is a long journey and if I wanted to be flippant I'd say, It gets a lot worse. However realism is what we deal in and realistically I will just say,''It gets a lot worse''.

I never expected to live 60 of my 81 years with a battle trying to find something that cured that feeling that most doctors don't want hear about and big Pharma won't research as long as they keep getting prescriptions for off label meds. The high profit drugs are the newer off label drugs. If the doctors just quit writing for off label you'd hear crying of patients late at night and drug companies bribing them to start back with off label drugs, but maybe they'd try to find where the signal starts and if there was a way to stop it that didn't turn us into either zombies of was ineffective.

It is easy to be bitter when I am in my 60th year of sleeplessness, hand ringing, foot jumping, leg pumping knees hurting Hands hurting and only the sufferers giving a rip.

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Kaarina
KaarinaAdministrator

Hi babyhart, if you are in the UK you may like to inform your doctor that RLS-UK, is a registered charity in England and Wales, committed to raising awareness of RLS; to providing information and support to those living with RLS; and to improving the quality of RLS care in the UK.

rls-uk.org

On the website there is a link rls-uk.org/professional-res... to help medical professionals learn more about the condition.

4 likes
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Babyhart
Babyhart
in reply to Kaarina

Thanks yes am in UK, just back from 3rd recent dr visit and I feel like giving up

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Kaarina
KaarinaAdministrator
in reply to Babyhart

Please do not give up. The doctors you are seeing appear to be most uninformed about RLS. Why not mention the website and the link for health professionals? They should be made aware that RLS most definitely does exist.

There is a survey that you are most welcome to complete should you wish to help raise awareness of this awful condition. Many of us on the forum have already done this.

healthunlocked.com/rlsuk/po...

2 likes
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Babyhart
Babyhart
in reply to Kaarina

Just did the survey

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Kaarina
KaarinaAdministrator
in reply to Babyhart

Wow! That was quick. Thank you so much. It really is appreciated. You are a star. :)

1 like
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Yakester

A couple other things to try are rubbing lidocaine on your legs when having trouble and take magnesium. These are simple things to try. I know when reading on this site the overwhelming number of ideas makes it daunting. But do try some/all of the suggestions. Something will help.

I had to go off citalapram and now take bupropion.

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Babyhart
Babyhart
in reply to Yakester

Thank you, I suggested today taking a different antidepressant but they don’t even question it. They don’t listen to me, as a nurse it makes me so angry that some practitioners do not listen to their patients and the pain they experience is real pain!!

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Kaarina
KaarinaAdministrator

Trazodone does not generally worsen RLS.

Mirtazapine (Remeron) will worsen RLS for a small minority but not everyone. I believe you have already tried the this and from what you said, you are unfortunately in the small minority where it worsened your RLS.

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There is a good medical textbook called Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Henning and Allen which your GP might be more receptive to. It can be ordered on Amazon. It deals with anti-depressants. There is one that is RLS friendly (can’t remember which).

Sadly it is an experience shared by many in here - fighting your doctor to get knowledgeable compassionate treatment. Just another layer of indignity and frustration with the awful condition.

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markren

Hi there, good that you took yourself off the Citalapram, that certainly will make your RLS worse. I had to do the same. I suggest that you do go back to your doctor and ask him/her to refer you to a Neurologist. Your doctor should have suggested another type of antidepressant for your low mood. I was prescribed a non SSRI antidepressant called Nortriptyline which helped me. It was not as good as the Citalapram but better than nothing. Living with RLS is a curse and I can completely relate to what you are going through. There isn't unfortunately a magic pill, its very hit and miss with medication. What works for one might not necessarily work for someone else suffering with RLS relief may be short lived but having an appointment with the Neurologist is the way to go especially if you have a unsympathetic doctor. Don't give up. There are lots of tips on this site to help you along the way. I wish you well and hope that you will eventually find your magic pill.

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markren

Forgot to mention , a few tips that can help me and give me short term relief. Hot bath or hot or cold shower, aimed at the legs. Vicks vapor rub, funny enough seems to work sometimes. Kneeling down and placing a bag of frozen peas, or similar, behind my knees and then sitting down on it. Another quick relief tip, if you have an exercise bike, jump on that and pedal like crazy. Like I said before, what works for one may not work for everyone but its its worth trying them out. 😆

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Broadbandbill

Yes SSRI pills can make it worse, but not always. My iron levels were ok. I take a small sip of a liquid iron supplement from Holland and Barrett. That helps. Also a magnesium pill. But my saviour is pramapexole. Very low dose, I have been clear for months. No alcohol or stimulants. You can go back to citalopram I am on it with no effect now. Good luck, you will be ok. X

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nick-the-turk

Firstly never give up.Have you thought about changing your doctor ?.I myself found i was hitting a brick wall with my old doctor who just wanted to get me out the door faster than i went in due to lack of knowledge abut RLS. After changing doctors and armed with great advice from people on this website it changed my life i felt lower than a snakes belly and could,nt see any light at the end of the tunnel but new doctor is understanding and i,m doing ok now not prefect but i can cope. so please there is help available this website will give you support you need i found that out and at anytime day and night.

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involuntarydancer

Good to see you back nick-the-turk but hope it’s not because symptoms have disimproved.

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nick-the-turk

Good to actually get to answer to someone, still all ok not great but coping, always read posts but just don,t get to answer many ! family life has been hectic the last 18 months or so for different and personal reasons and been in hospital myself recently for operation after falling of my push bike lol.You people helped me a lot when i was at my lowest and i,m grateful and now home life is settled again hope i can be more active in responding.

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Elisse2

Hi Nick, glad you are still doing ok-ish, Bad luck on falling off your bike resulting in needing a hospital stay. Good to hear from you.

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nick-the-turk

nice to eventually have time to catch up always read posts etc but never time to sit and answer lol and yes nice to be back lol

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Klh1

Hi, I'm 43, a keen runner, mother of 3, live in Hertfordshire, and take 20mg of citalopram a day, so quite similar! I developed RLS in my right ankle area, just under two years ago but only recently got a diaognosis. I saw numerous doctors, nurologists who were clueless what was wrong with me, one even suggested physiotherapy. Finally 4 months ago, I found a doctor who listened. She suggested I go on Ropinrole. I was initally reluctant as I have read about other sufferers bad experience of the drug, but it has changed my world. I take .5mg at night, and my life has returned to normal. I still get occasional twinges (on a recent 8 hour flight - but to be expected). I find that exercising everyday helps, and if it does twinge, I strap my left foot up with an ankle support.

I would recommed you try ropinrole and see how you get on. It has worked for me. I am smiling and sleeping! Xxx

Karon

London

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bauerannec

Hi,

I'm here to say WELCOME !

I want you to know rls is real and yes it does exist.I have it but in my toes ,I also have arthritis in my knuckles in my toes which probably Irritates the restless toes.

If your Doctor doesn't believe that rls exists you probably should start looking for a new Doctor that does believe that RLS does exist.When you do find a Doctor that can help you ,you may want to ask if you could start taking ropinirole, start with a low dose then increase it until you find the dosage that helps you.It helps me.

Have you had your Iron levels checked ?

You may want to start taking Iron supplements and see if they help you,because I've read that low iron levels (anemia) can make rls worse.

Good Luck and God Bless ,from Texas USA

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Hidden
Hidden

I have had tremendous success with compression socks. I wear regular compression socks during the day and thigh high compression stockings at night. I also take CBD oil, magnesium and other electrolytes, eat low carb diet, and.0625 mg Mirapex. I just started 100 mg Gabapentin...which I may discontinue. Of all the above, compression socks and stockings made the biggest impact.

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Babyhart

Thank you everyone, went to parkrun this morning and now at Twickenham watching England rugby hoping RLS don’t kick in. Will have a good read later and go armed to my Dr with info ✅

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marsha2306

I hope you didn’t stop taking the citalopram cold turkey. You have to wean off of them. My doc had me do it over a month. Wellbutrin works well for me now. I take the 300 mg extended release.

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