Someone tell me what to do. My legs a... - Restless Legs Syn...

Restless Legs Syndrome

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Someone tell me what to do. My legs are terrible.

Jaynielynne profile image
35 Replies

I just want to beat the hell out of my pillow. I am up for work without sleeping

a single minute last night. My legs!!!! I feel like calling into work today but I

can't because 100 people are waiting in line to have my job. I am an emotional

mess right now from 3 nights of crappy sleep. I am leaving for work crying right now.

Do not suggest medication. My employer said that if I go on any mind altering drugs,

I am fired. My doctor called my employer to check and explain the situation and the

employer told me to start looking for another job. They follow the rules that the state

places upon them. Dopimine drugs are a no go because of the chance that I will fall

asleep on the job or not be as alert. So What can I do now?

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Jaynielynne profile image
Jaynielynne
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35 Replies

My heart goes out to you and your employers are so wrong to discriminate against you! Until I got Requip I was the same as you so I started taking them unknown to my employers, wrong I know but I was desperate like you! I can honestly say they never interfered with my job (nursery nurse) because I only took them very sparingly during the day then took 2 of a night to get a good nights sleep! Good luck and so hope you get some help xx

I wish there was an easy answer, but honestly, you will not get any relief til you start some sort of medication. Its your choice hun, end up so sleep deprived you will have an accident either at work on the way to work or at home. Depression will set in, that will mean meds for that.. Or you look for another job which allows you to take meds. Sorry, but that to me looks like your only choices. :(

Annieapple profile image
Annieapple

Dear Janielynne

You are panicked right now because you are SO VERY TIRED. Your job sounds incredibly stressful at the best of times, let alone without sleep. The more tired one gets, the more the legs go crazy. Your general health will deteriorate with lack of sleep as well.

Take a deep breath. You are worth far more than this. Your employers do not value you & won't care if you fall apart.

You need to decide between your long term health & this job. Anyway with lack of sleep building up you will eventually be asked to leave because of mistakes. Take the plunge & hand in your notice very civilly, (you will need them for a reference) & look for something else less stressful. I know this is easier said than done & there are many things about your life I do not know. However, I do know that life can only get better if you make this decision.

In the meantime have a warm relaxing shower/bath just prior to bed. Cut out all caffeine except for when you first get up in tha morning. Have a milky drink before bed. When your legs start, get out of bed & do some stretches & deep breathing. Listen to some soothing music. Don't lie there trying to sleep. They just get worse. You may have to do this a few times but better than the frustration of NO sleep at all.

I know this sounds ruthless & hard BUT you are special & valuable & your employers are not treating you with dignity. You need to get your health sorted with the help of your doctor. Ask him anyway, whatever your decision, to refer you to a neurologist. They specialise in RLS & have lots of empathy & work with your GP to help you.

Whatever happens, don't give up!!

Take care of you

Annie

Jumpey profile image
Jumpey in reply to Annieapple

Very heartfelt response and I agree with you.

Jaynielynne profile image
Jaynielynne in reply to Annieapple

Thank you Annie and everyone who replied, tried to help me.

I am experiencing a body breakdown because of the lack of

sleep so I may not pass my yearly work physical and be

demoted or let go when that time comes. They will simply

say that my position has been eliminated and they will move

me. It's been done before for people who can't pass the test.

Good advice from Annieapple... :)

gingerman12 profile image
gingerman12

Surely this employer is breaking the law!! What laws state that you cannot take drugs and go to work!!! It never occurred to me to tell my employer when I began taking Pramilpexole (a dopamine agonist). If I had been asked, though, I would have told him. It is not a secret and I always tell if asked, but taking it can only have a beneficial effect on my work. Is this a mind-altering drug? I don't think so - no more that any other drug. i think your employer is being ignorant and a bully. Go back to your doctor and take whatever he advises - it is between you and him. your employer will only notice the spring in your step and the quality of work you will be doing after a good night's sleep!! :) Before taking meds for my RLS I was no good to my self or to my employer, regularly going in to work after a couple of hours sleep. After i started taking Pramipexole and began to sleep better I was far more able to do my job well. Sleeplessness is a destructive thing. Do take care of yourself first and foremost. The only time I was likely to sleep on the job was before I began the pills! Do have a re-think. You need all the help you can get. Do not be bullied by an ignorant employer. All the best.

Jaynielynne profile image
Jaynielynne in reply to gingerman12

Thanks - I still haven't hired a lawyer. Nor did I contact

the district attorney. If I was my own employer, I wouldn't

want the person in my position to suffer a sleeping disorder

and surely wouldn't want them taking drugs of any kind.

I think that I have to make a decision soon. No sleep is

showing up on tests that my doctor gave me for routine.

in reply to Jaynielynne

There would be alot of people not working, if they didnt take medication to survive and get to work. A employer over here in the UK, wouldnt get away with not employing someone because they have to take medication. This doesnt just relate to RLS, lots of other medical conditions that people suffer with they take meds for, AND work. Just saying....

arjay profile image
arjay

If this happens tonight try a couple of Cocodamol with warm milk to help them disolve quickly and a hot bath. I find as hot as possible works for me, just keep topping up the hot water. I can only say what works for me and hope it helps you aswell. I find the hot water has the same effect as a cold compress on your forehead when you've got a headache. Good luck.

Jaynielynne profile image
Jaynielynne in reply to arjay

No co codamol in my state in the USA. Hot water works for a little while. Thank you Arjay

Jaynielynne. Your situation sounds too difficult to cope with. Going without sleep to that extent seems far more 'dangerous' than taking medication for your RLS! Please let your doctor prescribe one of the dopamine medications. I have never found them to interfere with my way of thinking. The neurologist told me that one has to take a very large dose of the dopamine drugs before

the 'suddenly falling asleep without warning' may occur. When you first start on medication for RLS, your doctor will probably prescribe a very low dose. I used to take my medication before bedtime, not during the day when I was up and about.

When everything else fails (re medication) it may be possible to get help by taking a hot bath. For me it does not work. Heat on my back and legs will set off the restless legs immediately and I'll be in agony until the meds have kicked in! We are all so different!

Before I heard about medication I used to get help with my RLS by getting down on the floor, lying on my back and 'bicycling' my legs up in the air about 50 or more times. You need to really stretch you legs while doing it! It always helped. I could get back to bed and fall asleep after. Give it a try! ( I'm too old now to get down on the floor and then get up again. It would be a major effort, specially after having two hip replacements).

Good luck! I really hope you get some relief soon and some sleep! Remember it is your body, your life, and you must deal with the needs your body tells you. No one else knows better than you!

landman profile image
landman

Pot before bed helps me.

bvlgari profile image
bvlgari

Wish pot was legal in the U.K.

gypsy49 profile image
gypsy49 in reply to bvlgari

me too ... works for me

Jaynielynne profile image
Jaynielynne in reply to gypsy49

Thank you. Pot is illegal where I live. I can't have a record and lose my job. That's what would happen.

Brett85 profile image
Brett85 in reply to Jaynielynne

Where are you from Jaynielynne?

Jaynielynne profile image
Jaynielynne in reply to Brett85

Planet Earth - how about you?

connie50 profile image
connie50

hi jaynielynne I feel for you but your employer is being a complete bully & an arse I no were your coming from but no one and I mean no one as the right to tell you what medication you can take and not your so called boss(it would be a completely different story if he had to suffer with this terrible condition) without medication you will not get any sleep whatsoever I am at this moment in time trying to wean myself of of repinarole (have augmentation)its killing me not sleeping just walking round like a zombie, so what im saying is without any meds you will not get any relief from RLS and you will definitely not get any sleep,& you will not be able to do that for long because depression will set in then you will have to start taking medication, DONT TELL YOUR BOSS THAT YOUR TAKING MEDS start of on a small dose you will not fall asleep during the day then when you get home take (whatever your GP prescribes) your usual dosage PLEASE LET ME NO HOW YOU GET ON

Jaynielynne profile image
Jaynielynne in reply to connie50

I called into work sick today. I am going to the doctor to discuss my options. I really am sick today. I want to just quit my job but the money and benefits are so good that I will not find another job to match even half of what I get now.

I'm not lucky enough to not be able to work because it's just me supporting myself. If I would have gone to work today, I would have been more sick than I am right now. I caught the flu, I think. It's going around. Hopefully I can get

some medicine to ward the flu off. It's my first day with it.

connie50 profile image
connie50 in reply to Jaynielynne

hi jaynielynne tried to send you a message ages ago but the computer froze were are you based USA or GTB or in other words were do you live when you say you are sick are you sick with the FLU or with the LEGS I've just got over the flu in bed for 3 days couldn't lift my head of the pillow apart from having to get up & walk about because of my legs I no how you feel, if you live in GB you can go on sick BUT if you're else were I don't no but the flu will pass just give it time it may take a week or so but it will pass, (I no that's no comfort) but it will. Its the RLS that wont go away no matter what you take I have literary tried everything going (even been to see a neuro) the only thing that I take is 2mg repinarole at night about 6 .15pm then about 8.30 im asleep but this doesn't always work I no this isn't what you want to hear but try and stay active in the daytime this seems to ward it of its only in the evenings with me when I try to relax my legs wont let me if you want to keep in touch just send me you email

Tpebop profile image
Tpebop

Hi Jaynielynne. This situation has been discussed before on this site. Basically, whether you're based in the USA or the UK it is ILLEGAL for your employer to treat you this way. Both American and British law states that RLS is a disability and so comes under discrimination legislation. They should not be bullying you but assessing your work station. They should be helping you with physical means to help you stay awake or allow you refreshment breaks etc. I know it's difficult but don't let them grind you down. Take legal advice from a union, community organisation or lawyer. Best wishes, Tpebop, Kent, UK.

gypsy49 profile image
gypsy49 in reply to Tpebop

Has RLS being classed as a disability in the UK ? it'd be interesting to find out for sure

connie50 profile image
connie50 in reply to Tpebop

hi there do you live in GB I didn't no that this came under a disability where will I find out about this?

Tpebop profile image
Tpebop in reply to connie50

Hi Gypsy49 and Connie50. Okay I may be a tad confused. I suffer from RLS, PLMD (its night-time equivilent) and sleep apnoea. About two years ago I had a lot of grief from my employer due to daytime tiredness/falling asleep at work (!). It was difficult to tell if the cause was the sleep apnoea or the side effects of RLS treatment. Whatever. The key point is sleep related illnesses. They are covered by law both here, in the UK and across the Pond.When I researched the legal side of all this, it was the AMERICAN legislation that came up on Google, so I know that they do have good anti-disability legislation there. Also, I am a union rep and during training studied British Discrimination Law; Disability is covered in that. Finally, I had to have time off to attend sleep clinics. When I questioned whether I should lose annual leave to do this, I was told by my Occupational Health Dept. that sleep conditions were deemed officially a disability, covered by anti-discrimination legislation and so I could go without losing leave. Look it up for yourselves; it is all on the internet or available in libraries etc. Hope this helps; others on this site helped me when I faced similar problems. Respect due to them; respect due to you! Best wishes, Tpebop, Kent, Britain.

connie50 profile image
connie50 in reply to Tpebop

thanks for your info but trying to proof that RLS is a disability is another matter I no its all to do with not sleeping I no that all to well I think sleep apnoea comes under the disability act I will try and Google it thanks

gypsy49 profile image
gypsy49 in reply to Tpebop

thank you for the info Tpebop :) will do a search and see if i can print it out

Jaynielynne profile image
Jaynielynne

I didn't know rls is a disability. I probably will do what Connie said and just

take a medicine without my employer knowing. Thank you everyone. I'm

awake after 4 hours of sleep. .

Brett85 profile image
Brett85 in reply to Jaynielynne

If you get hurt or hurt someone else then your insurance will be void if you

break that law. Call a lawyer. You do not want that on your employment record. I live in the USA and truckers lose their job for becoming diabetic or having a seizure. It's legal what they are doing over here.

toolcreep profile image
toolcreep

I have recently taken myself off medication by personal choice (because I feel like my meds were slowing my metabolism down and making me gain gobs of weight). I have had some rough nights, but the best technique I have found for myself is to make the bedroom and bathroom nice and warm and as dimly lit as possible, then get into a tub of water as hot as I can stand and soak until I start to feel drowsy. Then I dry off and slide some jammies on as quickly and quietly as I can (so as to not stir myself to wakefulness) and then get right into bed. Almost without fail, if I try to go to bed before I do this, I will HAVE to get back up and do it. Afterwards, I can usually rest without the RLS bothering me so much :) I hope this helps. Oh, and folks here have told me to take magnesium supplements (which I still need to start) AND putting a generous helping of Epsom salts into that hot bath helps a lot, too :)

Rubylane25 profile image
Rubylane25

My God , move to Canada. That is simply crazy. Laws like that would never hold up here. Maybe it is time for someone to take up the gauntlet and start advocation for some human rights. That is just terrible! Job or no job health and especially sleep needs to be adresed.

ookla profile image
ookla

So sorry to hear this. Other than narcotics, the only thing I can suggest is laying on your stomach... when my legs are really bad, that seems to help a little bit. Wish there was more we could do for you. :(

Wollyhat123 profile image
Wollyhat123

A friend this week told me she recommends to mums of children with sleep problems that they give them half a banana before bed. She says the magnesium in it settles them. Just wondering if a full banana might help adults. Only a thought.

Hi, I am in the UK (Scotland) and i was nearly all the way to taking my (now ex) employers to court over the way they treated me regarding my RLS. They said things to me that should never have been said and stopped me doing things that would have helped to relieve any attacks that I had at work (and they were for all afternoon every afternoon). Basically they made my life much more unbearable than it was - they too were bullies. So when it came to the court case RLS is not automatically a disability in the UK, but rather the way it affects you is. If it affects your daily life in the way that it stops you doing ordinary everyday things (such as standing in queues, sitting for a meal, in fact doing anything that people take for granted in an ordinary life, it is classed as a disability. Look up the Equalities Act and it will explain it all. The things that you can't do are the things that will qualify RLS as a disability, believe me I had no problem qualifying as I was on record as not seeing any point in going on, I couldn't take car journeys or travel by bus. I couldn't sit down for an ordinary meal or a drink. No social life. These are ALL things that qualify RLS as a disability in the UK. Needless to say once my ex employers were told that yes, my RLS is a disability, they settled out of court....

EEW42 profile image
EEW42

Hi Jaynielynne,

Believe me I know your pain and anyone with RSL knows that the mental pain associated with it is every bit as bad as physical pain. I'm seventy five and have suffered with RSL for the past 35 yrs or longer. Over the years I have been prescribed numerous drugs, some no help at all, others controlled the symptoms but stopped after several months. I have a severe case of RSL and sleep is impossible when the symptoms are present, which is constantly for hours if for any reason I cannot take my drugs. Not long ago on a holyday weekend I ran out of my drugs and my Dr. had failed to call my prescription to the drug store. Normally the symptoms last for 24 to 30 hrs., this time I was awake and walking the floor for 72 continuous hrs. At one point I considered taking my on life. Like I said I have a severe case and can well under stand any others battle with RSL. About 5 years ago my family Dr. prescribed Mirapex for me, worked well controlling the symptoms yet had to increase dosage twice and a year ago symptoms started to return. At that time he added Gabapentin to the prescription. 4.5 mg Mirapex and 300 mg Gabapentin at least three hrs. before bedtime. I have to be diligent about the time, if the symptoms start the drugs will not stop them.

Forgive me for this long winded reply and I hope it was in some way helpful for you.

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