Things have gone a bit crazy - Restless Legs Syn...

Restless Legs Syndrome

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Things have gone a bit crazy

40yearsRLS profile image
13 Replies

I have to admit that I have just shut myself off in a state of depression and sleeplessness. I've seen all these responses popping up on my phone and have not had the common courtesy to read through them all. I will do that now. I just couldn't face doing anything the last few days, no sleep, then being sick before I go to work from nerves. I have my meeting next Thursday, god these big companies love to draw these things out. I have spoke to my union rep and they have said already they are not hopeful. I'm all over the place emotionally. I work at Heathrow Airport, customer services, basically checking in passengers. It's not the easiest job, but I've been there 11 years and was only able to hold down a job since taking Ropinarole. I treat people as I would like to be treated myself, and have found it works wonders. I'm a strong believer in karma. At the moment I feel so fragile, I don't know how I managed to check in passengers today, smile, have a joke with them and generally get through the day. Can't stand the thought of being unemployed because I certainly had my fair share of that years ago. As much as I'd rather pull the blankets over my head when I've had days of no sleep I was proud of myself for sticking to a job for the first time in my life. Oh god! Hey ho, what will be will be. Have to keep telling myself that or I'll lose the plot.

I'm getting my stuff together, all my paperwork, if I can find it, everything's upside down in my life. BUT I will fight it all the way and I have the love of my family, my friends and new friends found here. 🙏🏼

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13 Replies
Joolsg profile image
Joolsg

I suggest you call Dr Guy Leschziner's secretary first thing Monday morning. He is an RLS expert. He is an NHS neurologist and he does private work as well. Explain it's an emergency and you are about to lose your job. Explain your situation and see if you could possibly get an emergency letter sent to your place of work. Tell your Union rep what you are doing.

Links for his NHS workplace and private work attached.

londonbridgehospital.com/LB...

guysandstthomas.nhs.uk/our-...

It will take you around 2 to 3 months to reduce the Ropinirole and get through withdrawal safely and once through withdrawal, you should get on Pregabalin which will help you enormously.

Read Nick -the -Turk posts on here. he went through the same as you and is now off dopamine agonists and doinf well on pregabalin.

You have effectively been made a drug addict by your GP and you are suffering the consequences now so the least they can do is help you now.

I've sent you a private message in "chat"

Jools

40yearsRLS profile image
40yearsRLS in reply to Joolsg

I can't thank you enough, that's amazing, I've just looked into the links you have sent me, I'm on it!! X

Smiler53 profile image
Smiler53 in reply to 40yearsRLS

Wishing you all the best. X

Sunshine458 profile image
Sunshine458 in reply to Joolsg

I have been trying to find the Nick the Turk posts on here but I will try again...I am on day #21 and I am only taking 1/2 of 0.5mg Ropinerole a day...my GP would probably give me a prescription for pregabalin ... I will make dr appointment as soon as I can start taking it instead of the Ropinerole ... Do I have to be completely off the Ropinerole first and if so how long before I can take pregabalin??

I am feeling desperate and so depressed and actually total despair!! I am worn out with it all at 68 years old!!!

THANK YOU ALL SO MUCH FOR ALL YOUR HELP...CANNOT DO IT WITHOUT YOU ALL ❤️❤️❤️

Sunshine

Kaarina profile image
KaarinaAdministrator in reply to Sunshine458

Hi Sunshine,

This is a link to one of Nick's threads:

healthunlocked.com/rlsuk/po...

If you open this link then you can click on Nick's username (nick-the-turk) and see his other postings if you wish.

Joolsg profile image
Joolsg in reply to Sunshine458

No you don’t have to be completely off Ropinirole. Pregabalin takes 2-3 weeks to be fully effective and it’s best to start taking it in small doses, say 50mg every 2-3 days and monitor its effects. Build up to around 300mg (but you may find its effective at a lower dose) . Take at night around an hour before bed.

That last .25 mg of Ropinirole is really tough so get help from GP so you don’t suffer too much. I took tramadol every 4 hours for about 5 days during the worst of it (4-5 days after last pill).

Well done for getting this far. You can make it.

Jools

Jumpey profile image
Jumpey in reply to Joolsg

Great advice Joolsg. good luck 40yearsRLS.xx

Joolsg profile image
Joolsg

Off to sleep now, but do let me know if I can help as set out in my message in "chat" above.

Take care,

Jools

40yearsRLS profile image
40yearsRLS in reply to Joolsg

🙏🏼😘

40years old , please look at the link Kaarina, has posted on here, which will take you to Nick the Turk's post . he was in a very dark place at times, we had to keep him going many times. You will see he came through it all eventually. it will give you hope that this will be you in a few months time. Nick was/is a postman, and i dont know HOW he kept going posting all those letter etc on such little sleep. Jools as usual has given you great info.!! :)

angelsreign profile image
angelsreign

You really need a colleague who can sort your paperwork out for you and be with you at any meetings etc. I know how impossible it is to think clearly when you are desperately tired and depressed. I managed a care home, and would fall asleep at my desk!!!!!!!!! Not good for staff moral... My employers were very understanding, but I resigned as I felt it wasn't fair to staff or residents.

Whatever happens, stay strong - you have people who love you and you are more than your job.

Take care xx

I cannot add to the excellent advice already given but wish you every good luck for the meeting.

Your meeting is Tuesday? I will be thinking of you. Good luck! If things turn sour, stay strong! I am glad you are proud of yourself because you have every right to be!!!! We are dealing with hellish conditions with everything this RLS brings.

BTW, I really identify with your sentence “At the moment I feel so fragile...get through the day”. Although I don’t work, the same thing translates. Here’s mine: “Every day I feel so fragile, I don’t know how I manage to stay upright when walking places, how I manage to interact with people without ripping their heads off, and how I manage to get through the day alive”.

Kudos for the great attitude!!

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