I'M NOT SPEAKING TO ANYONE ANYMORE IS WHAT I MEANT TO SAY

I have reached te end of my tether...last night i had a night from hell..every 5 mins the legs started, i had no energy to get out of bed, i just tossed and turned, tuened and tossed untill 6 am then got up. My doctor upped the pramipexole dosage and this is the result. I have put on over a stone with these pills and still nothing is working....i cant take any more,i'm so depressed im speaking to anyone, i just dont want to live like this anymore...u cant even call it living..im either going to drink a bottle of whisky or take enough pills that i wont feel anything anymore..i have never felt so low

36 Replies

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  • I'm here. I read this. I am sorry that you are having a difficult time.

    What's going on now?

    How long have you been without sleep?

  • tHIS IS MY 4TH NIGHT....I CANT GO ON.....I WANT MY HEALTH BACK AND ITS NOT HAPPENING...I CANT EVEN CRY..IM JUST IN A DEEP BLACK HOLE..ENOUGH IS ENOUGH IS ENOUGHHHHHHHHHHH

  • TO YIKES, GYPSY AND ELISSE.....NO POINT NO POINT MY DOC'S USELESS, DONT KNOW WHICH WAY TO TURN, I JUST WANT OUT OF THIS HELLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL

  • If you got pramipexole from your doctor then you can get something else, you need to get off the pramipexole, its that med that;s making it worse,

  • TO YIKES, GYPSY AND ELISSE.....NO POINT NO POINT MY DOC'S USELESS, DONT KNOW WHICH WAY TO TURN, I JUST WANT OUT OF THIS HELLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL

  • What do your legs feel like?

    Explain please...

  • I cant explain...first they are hot, then the other things start..u know tingling, jumping etc etc i cant explain cant put it into words

  • Hot legs? As in allergic reaction or just uneasy?

    Can you massage your legs with your hands?

  • Maggie126, please please get to see your doctor as soon as, you really need to get help from him/her....

  • doctor useless

  • Maggie 128..Please call your doctor. What you are saying IS an emergency.

    You are giving me gray hair with worry.

    I'm here if you want to talk. Honest.

  • doctor useless

  • Please Maggie, call your doctor right now and

    tell Her/ Him that you have reached the point of no return.

    They can't know that unless you tell them.

    I get really nervous, scared from what you say/ are feeling.

  • doctor useless

  • Maggie, if you do not want to call your doctor, please call SOMEONE, so we know that you are not alone. I know in the UK it is hard to switch doctors. We have all been where you are right now. You have to at LEAST call your doctor and tell them what is going on. I know you do not like him. An, I know you do not want to describe your symptoms to anyone. We know what you are feeling, and right now you cannot even come up with the words. You have to try and get a different med or a different doctor. Have you seen a neurologist or a sleep doctor? I am still getting used to your health care system over there, but please call SOMEONE????? Send me a private msg if you want. And, don't disappear so that we know you are ok. check in with us, ok?

    ((hugs))

    Donna/USA

  • Oh Donna, thank you but my doctor has not any idea about RLS.....she is convinced its nerve damage from diabetes...we know its not..i had to show her this site to get her to give me something for it..all its done is make me worse...i told her my research suggests its a lack of dopamine, she lauged, so what chance do i have to get to see a neurologist or sleep doctor..you are all lovely people i feel so bad to make u all worry......ive been selfish..forgive me..i should have kept how im feeling to myself...the last thing i wanted was to make anyone worry..i am sorry

  • Maggie?

    My face is beet red with worry..

    What are you going to do? Tell me that you

    called your doctor or the er or someone..please.

  • Maggie, talk to us, we need to know you are ok.... Phone the out of hours doctor, you might get help tonight. At your surgery do you have other doctors, so you can see a different one. We are all worried about you, please post a comment hun, we need to know you are ok...

  • Maggie, I have felt like you before to the point of crying and pulling my hair out!

    Please see another doctor or as I did go to your hospital and refuse to move till they help ! Ask for the other different medications we all take and see if one of these will help!

    Please don't give up maggie x

  • Thank you Rish, im struggling and fighting hard to get through this night..im trying my very best to stay strong...its a loosing battle but i will try my very best to get through this...im just so very very low now...... xx

  • I know maggie and remember we are all here for each other we all suffer in our own ways ! I do hope you managed to get some sleep? I seem to settle better in the bath I did at my worst sleep in the bath you just have to put a Blowen up child's swimming ring round you so you don't drown, and the water goes cold after 2hrs! I did once try to invent a water leg machine but I could not build what I had planned but I recon if it worked it would have been brilliant :-)

    At the moment I am suffering bad with head aches, just typing this is hurting my head :-( I am stressed out due to family problems and I really miss my mum she also suffered with RLS !

    Hope you are feeling better and see another doctor tell them how you feel and ask for another medication to try . Take care lv Rish x x

  • Maggie I am in the UK and know you can phone NHS direct they will help. I do so hope you managed some sleep but you probably did not. Do not know if this will help but like you I have RLS 24/7. My Doctor is about as much use as a chocolate tea pot and my health authority will only give Ropinorole. Take magnesium (I take 600mg a day) 2 hours before bed take 1 tremadol (tell your GP anything pain related to get them) and if they will agive you them 1 ropinerole and have a banana. An hour before bed take another tremadol. You can take up to three Ropinerole but will need to increase slowly. The reason for the Ropinerole is it is the cheapest (I think ) so that is the easy on to get from your GP. Please message me if you want my phone number for a chat but whatever you do keep in touch and grap a friend if it gets very bad and BOTH go to casualty or the out of hours and insist. Do you live alone?

    Hope this morning brings you some peace.

  • tHANK YOU SO MUCH TO EVERYONE WHO HELPED GET ME THROUGH THE WORST EVER NIGHT. went at noon to my GP...SHE WONT LET ME CHANGE THE MEDS, ITS PRAMIPEXOLE OR NOTHING...she says anything else will clash with the meds i take already..as if pramipexole dosen't !! i have opiods here, Tramadol, DF 118forte, buprenorphine patches, all for athritis...noithing really works anymore, body too used to them, but it takes the edge of the pain...they have had no effect on my RLS..i mentioned again the low dopamine levals,, migt as well bang my head against a wall...she's convinced my RLS is nerve damage from diabetes. im going to wean myself off slowley from pramipexole... and take cefendaniels advice and try magnesium...at this point i'll try anything..I want to thank all of you, ellise, yikes,rish,nightdance, gypsy, jumpylegs, rosie, darragh and cefendaniel.....you will never know how much strength u gave me last night..u got me through....god bless each and everyone of you xx

  • Hi Maggie, just to let you know, weaning off the pramipexole will be hard to do, and you will probably have a few more bad nights. so good luck with that, and keep us informed on how you are going. Someone as you saw from last night is usually on here I dont know about some of the others meds you use. but i know tramadol is good for RLS so it might help after you get off the pramipexole. Your doctor is useless just as you said...is there another doctor in the practice you could see, they might have a better idea of how to treat you..

    No need for thanks Maggie, i am pleased we could help you last night and got you through such an ordeal..

  • From about now drink no tea, coffee cola or alcohol before you go to bed. Have a milky dring with a couple of banana's or whiz up a banana milk shake and take your tramadol as prescribed. Turn off all things electrical TV, computer and leave the window slightly open. If you wake up and cannot get back to sleep get up and do something and after 20 minutes go back to bed and try again. Please try to get up and do something to take your mind to a different place. I make jewellery most nights at about 3am using tiny beads this helps me. Keep looking for answers to your suffering. I know how hard this is and I do so hope you have a better night tonight. Bless you

  • I have been taking my tramadol today, bit by bit reducing the pramipexole dose...always i have milky drink and a banana b4 bed, but not being able to take my beloved diet coke to bed will be hard....but i am willing to try anything

    Thank you all once again, my guardian angels...you make me feel safe

  • Maggie, I put my head down on my desk and started

    to pray for you. You are on a prayer chain over here

    in the states. I am not looking for thanks but I do want

    for you to never reach that ugly point again in your

    lifetime. I was very scared Maggie for you. Please never

    ever give up. I do believe that Elisse does have a gift

    to calm you and help you.

    I'm clueless but my heart is in a good place, Ms, Maggie.

    I do care about you and what's going on in your care.

    You too are an angel. I learned a lot from you as well.

  • What a very smart lady and helpful you are. Thank you.

    I drink an incredible amount of tea. I eat popcorn at night.

    Not anyone has told me about the diet. I appreciate it.

  • My Rhumy said that quite a few of his patients with RA

    also have RLS and he can tell with the numbers in my blood

    test and by the way that I was looking to him that I had this

    disease. It is a real disease that affects how my body functions.

    It's frustrating to not know who you can see for care and how

    meds are prescribed, what's available over there. That's why

    I ask so many questions. It might just be a dumb suggestion

    to tell you to please look to another doctor who is compassion-

    ate and has at least some knowledge of RLS.

    Are you stuck with that one doctor or could you look elsewhere?

    I will never tell you or anyone what I think that you should take

    but It's very interesting that Vicodin is not available over there.

    Has anyone ever tried Medical Weed or whatever name it

    goes by over there? It's very illegal here where I live but

    people use it to control pain, relaxation in my RA Community.

    I'm not suggesting it but if it's legal there..could that be a

    script that the doctor writes out? ( I have never once even

    tried it on a recreational level, honest, I don't know how to

    inhale. I was afraid to eat it in Brownies for getting caught.

  • Hi Everyone could someone just check the info I have given Maggie is totally correct think it is but just to be on the safe side Thanks

  • Hi cefndaniel, you have given good advise, i would be getting in touch with all those people if i was that desperate.

    But Maggie needs to get off the pramipexole which is why she is suffering so much, putting anything else with it wont help. She has augmentation on that med. and needs her doctor to change it for something else..

  • rls.org/Document.Doc?&id=2112.

    This is a link to the RLS Medical Bulletin which has been compiled by the RLS Foundation. Please print it off and take it to a doctor. It says on this that opiods should not be witheld if absolutely necessary. And it discusses other medications available for treatment.

    Even if your doctor would just give you opiods for one week to get some relief and some sleep and then reassess the situation with a suitable medication regime. PLEASE DO SOMETHING and as previously suggested take someone with you for support and to back you up and also to be able to repeat what the dr tells you because you are probably too exhausted to do it by yourself.

  • Hello Maggie`

    I have read your very sad cry for help and was also allerted by a couple of people.

    Please ring the help-line for Restless Legs. At least then you are talking to a real person who sufferers also. Please ring Monday and Thursday 9 - 11 am when the line is open. If you are unable to ring at these times then please still call and leave your phone number so that you can be called back. Even if the line is busy still leave a message. The No. is 01634 260483

    Please don`t suffer on your own.

    From a well wisher.

  • Thank you so much Raphael, i shall call thursday....please god i dont feel so desperately low ever again..without the help and encouragement of the lovely people here, i may not have made it through..i pray tonigt will be a better night x

  • Here is an old standby that brought me luck.

    Stand at the side of your bed, facing the bed. Keep

    your feet close to the bed but flat on the floor.

    Now lay your front torso on the bed and your head

    on the pillow. You should feel a light to med stretch

    in the legs.

    Now proceed to lift your heels as if you are standing

    on your tip toes. (Please do this in the dark because

    it looks weird if someone should see you do this) Now

    hold that position and relax your torso, head to the pillow

    just as if you will sleep in this position.

    Keep doing that rock slowly of heels lifting, feet flat to

    the floor for several good reps.

    I did get through those times by walking the house on my

    tip toes again and again but it's not safe for me to do that

    anymore with a recent total knee replacement.

    My rhumy said that lights signal the body to fight sleep or

    wake up so he suggested tiny button night lights to the

    toilet. It can affect RLS to turn lights on bright in the middle

    of the night.

    My Rhumy knows all about Restless Legs Syndrome.

    He said that most of his patients have it along with RA

    to some degree. May I suggest going that route to

    check in with a Rhumy Doctor? Call his office and at

    least ask if they deal with that.

    I live in the USA.

  • Hi maggie, I am so glad you are ok!

    I really think you need to ask for a different doctor as I was not having much luck with two of my doctors I tried another 3 till the last one actually helped me!

    Most doctors don't know their own a*se from their elbow!!! God knows how the passes there exams?!?

    We are all here to help as best we can, I find when my lower back is painful my legs kick off but I am on the neupro patch and find it works great :-) x x take care and talk to us if you Eva get so low x

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