Is it just me or does someone else start crying every evening when this horrible monster start bothering you? I am sooo terrified of it that I just cannot help it. I feel so miserable!! I have lots of pains but no doubt RLS is the WORST thing that can happen to anybody. I survived cancer and it didn't make cry like this. 😢🤦♀️👎
Crying!!: Is it just me or does someone... - Restless Legs Syn...
Crying!!
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Micafe
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Hi Mí afe, this is a short reply, I'll do more later but, can I ask, have you been having issues with your mood? Could you be depressed?
It almost sounds like you have a bit of a fear/dread on you about the oncoming suffering.
I went through a really, REALLY bad patch some years ago. EVERY time I feel those f**King urges to move I get a little panicked - as if things were going to get that bad again even though I know it won't.
There is such suffering with RLS, made worse IMHO by those who think they understand!
I feel your pain, unfortunately, so please don't despair - your rls symptoms can be managed and if you let us know what drugs you are on, even non rls ones, and if you have any dietary changes made.
It can look very bloody bleak at times but there is good help here PLUS good support for the other crap that comes with RLS.
Stay strong and know help is near.
Take care.
Micafe in reply to
Hello raffs,
Yes, I have been depressed for a while due to all my health problems and other things I have to take care of . Sometimes I feel it's too much.
That's the reason why my doctor prescribed Lexapro but it didn't do any good. Now I am tapering down and the withdrawal symptoms are just unbearable.
I have all these pains but the only health problem that makes me lose control and cry is the "monster" as I call it. I used to be a strong person, I've gone through a lot of things and I've managed to get over them but the monster is too much.
Currently, the only prescribed medications I'm taking are Synthroid for my thyroid and, of course, Ropinirole. Ah, and Lexapro which I mentioned above. For pain I take Tylenol which is the only pain killer my Dr. allows me to take because of my kidney problems. I take several vitamins including B complex, vit D and iron.
Thank you for allowing me to talk about this. You know, the world has changed so much. My old time friends don't seem to care anymore. I feel I am so different. I always worry about other people and try to solve their problems but I don't seem to be able to solve mine.
Hugs
in reply to Micafe
Can I ask - what is wrong with crying? It is a very normal human thing to do when you are in pain. The tears themselves contain some of the stress hormones that is making things worse so crying removes these from the body. It regulates mood and can allow relief IF we don't see crying as bad, otherwise we see it as an action of defeat.
If you are at home and not disturbing anyone else - wail your heart out, you will feel better for it.
The Lexapro is a SSRI drug which can make RLS much worse - the withdrawal aside at least that is something positive, things should lessen RLS wise as your body recovers from the antidepressant.
I don't know enough about the effects of the Thyroid medication but something tells me people have had issues with some of it,
it was the thyroid imbalance but something is ringing bells and if I can find it I'll let you know.
The reason you always worry about other people is because it is much easier to focus on others than to focus on ourselves. I have a sibling that is too busy worrying about the whole country to realise the issues they face themselves. You need to rejigger your focus - look into meditation and mindfulness as a way to cope with the unpleasant thoughts. Distraction - whatever you do that you enjoy - do it! The less your mind focuses on the negative the less negative there will be. I know that sounds a bit trite but try it and see.
The biggest issue people have (myself included) is the refusal to accept things as they are. This adds a great deal of stress on top of an already stressful situation. By accepting that for the time being (we don't know what the future holds and even though I have spent the last 50 years of my life with RLS I still keep hope for an effective treatment), we are not well and have to learn to deal with the crappy hand we are currently holding.
Things never stay the same so don't give up hope. Your friends probably just can't wrap their heads around it and for many when we are experiencing a life altering illness all we do is talk about and around that. Talking like that all the time can be boring for those that don't have the condition or a good understanding of it and that can cause them to seem distant and less caring, they probably are just as caring about you, but maybe not so much caring about the condition if you follow me.
I am a firm believer that everything is resolved one way or another, we just have to keep plodding on and not give in to those horrible little voices that tell us we are doomed. We aren't - there is enough help here to make things better, its just a matter of getting what suits you and suits you at this time.
Take care.
Micafe in reply to
There's nothing wrong with crying, I'm just getting tired of it. 
I've always been the type of person who worries about other people's problems and I always try to help. That's the way I am and I don't think I can change that. Even if it can be difficult sometimes, I don't want to become indifferent to other people's problems when I know I can help. I like the way I am.
A very close friend, my cousin's wife, told me a couple of weeks ago that she wasn't feeling well. She said she had a bad 'cold' and when I suggested a test for coronavirus she insisted it was only a bad 'cold' and even asked me not to mention that again.
For a whole week she was in denial. She was terrified and said that she didn't want to die.
About a week ago she told me her daughter had got a 'cold' also and at that moment I knew I had to do something. I even had to get angry to make her accept help.
One thing I haven't mentioned is we live in different countries!.
I managed to do everything over my cellphone. Both, mother and daughter, tested positive. Her husband, my cousin, tested negative at the time.
To make a long story short, she was finally taken to the hospital and today she's in the ICU in a coma and the prognosis is very poor. The doctors and nurses are doing all they can to save her life but I'm not sure she's going to make it.
The husband had a second test and they found out he is also infected and today he's in the hospital but not in the ICU.
The daughter is under treatment at home and is doing better.
I told you all this so you understand why I just cannot ignore things when I feel I'm needed. I know it's not good for me and my health but even if something terrible happens to her, I'm happy I did what I did.
Take care. Sending blessings your way.
in reply to Micafe
Nobody is saying be indifferent to others suffering, I couldn't be.
What I am saying is - if you don't start to prioritise yourself you will end up unable to help anyone, even yourself. If you are to care for others you must look after yourself - its caring 101.
Your family & friends are lucky you are looking out for them, but who looks out for you? The problem with always looking out for others is you give away all teh energy that would sustain you. By prioritising you it is not ignoring others, its ensuring you will always be there to help.
Just a thought.
Take care.
Micafe in reply to
But I do, raffs, I do!! I prioritize myself! I struggle a lot to make myself feel better. I make a huge effort with the help of my adorable husband. However, I just can't ignore it when things like the one my friend is now going through happen.
I'm not doing things for everybody else everyday. I'm not looking for people in trouble just to help them. I don't have the strength to do that and I'm not interested in making my health worse than it already is by doing that. No way.
Also, I don't believe everybody deserves my help. I know many people who don't but one of my joys in life is to make people I love happy so I'll be happy too. 😘😍
I understand what you're saying, my dear raffs, believe me, I do. You're 100% right and I really appreciate it. The thing is, I feel really good when I've done something for someone in need. That's part of my nature. I feel useful and proud of myself.
If I failed to do something for someone who needs me, I'm sure I'd be far more depressed than I am now because I would also feel guilty and very disappointed.
Please, continue taking care of yourself. 💝
Micafe
Oh sweetheart i feel for you. I cried two nights ago when i was hopping about with restlessness in my feet and i fell to the floor and hit the back of my head against the beside table. It was so fxxking sore. I was afraid to go back to sleep for fear of concussion, and then i said to God, take me tonight, I don't give a damn. So I now how depressing it can be at times. Hang in there. For every problem there is a solution, somewhere, somehow...a different one for each of us to find. You are not alone. Next time you cry, remember that. Hugs.
Oh Ballybofey26. What a terrible thing .
I feel for you. You know, I haven't fallen but me too, I have begged to die. I'm not afraid. Three times in my life I have been very close to dying. The first time, I fell off a horse and almost got killed. The second time I got an incredible tropical disease I had never heard of. The Dr. told my husband at the time I wasn't going to make it. But... I did! He saved my life. The third time was... cancer... Extremely invasive. I'm cancer free now.
Hugs
Hi Micafe, thinking of you and hoping that your body is less restless today. Wanted to let you know I haven't fallen out of bed in two months! Ha! I've also managed to come of Pramipexole and feel better. My body is still restless but I feel less agitated! ( as Eckhardt Tolle would say, there are two of us here! The body and the I - ha! Mind you this does help). And thank God the body is not as restless as it was when I was taking the meds. I guess I will have to go on meds again in the future, but just for today It's manageable. Feeling grateful. Hugs to you!
Hello Ballybofey26. It's so nice to hear from you again.
☺️
I'm happy to know you haven't fallen out of bed!!! He he.
I finally came off Lexapro! The withdrawal symptoms were killing me. I started taking trazodone and it seems to help.
I bought a weighted blanket and even though things are not as bad as before, frankly, I was expecting more.
All my pains are still there and there are moments when I really feel the need to cry.. I can't help it.
I wish you a Merry Christmas. This is probably the saddest Christmas in my life. 😪Just my hubby and myself.
🌲🌲
A big hug. Take care.. 💕
Hi Micafe,
You're not alone and you're not going crazy. You are dealing with a horrible disease, and if I remember correctly, aren't you coming off a drug due to augmentation? Sorry, I can't remember but have you got all the medical support you need right now to get to a place where your symptoms are more under control?
Right now, it should be all about you, self care, and doing everything you can to get to a better place. And that can be so hard when you have no strength as you're so exhausted. We're here to support you, we know you are suffering, but it will get better. As Raffs asks, let us know your details so we can help.
Hi Sampsie,
I haven't started coming off Ripinirole yet because I'm still tapering down Lexapro and it has been a very slow process. The withdrawal symptoms are just terrible. Probably part of what I'm going through now is because of that.
Thank you so much for your support and the nice words. I am trying so hard. I live very far away from my family and that makes things worse. I only have my husband here... I don't know what I would do without him. 
Hugs.
Hi, it really sounds like you’re struggling at the moment, bless you! Just wondering if you’re coming off your Lexapro too fast, and therefore you’re getting the withdrawal symptoms. I was coming off Citalipram, another SSRI and had awful brain zaps with my withdrawal and my GP put me on fluoxetine for a short while which is is SO much easier to come off. Maybe that’s the answer for you. As for the RLS......just awful isn’t it!! Fingers crossed you’ll be able to get help for it when you're on top of your meds.
Sending a MASSIVE hug 🤗 and remember......these days too shall pass (there’s a light at the end of the tunnel!) xx
Hi!. As a matter of fact, I am coming off Lexapro very, very slowly because I am terrified. It's been months now and I have several months to go yet.
I really needed that hug. Thank you!!! <3
What is this Augmentation you are talking about taking Ropinirole? Are there bad side effects or long term effects of taking Ropinorole?
This link is on the Pinned Posts in our community and explains Augmentation. healthunlocked.com/rlsuk/po......
Augmentation is a paradoxical worsening of RLS symptoms as a result of the medicine you're taking to combat the RLS. It occurs almost exclusively with dopamine agonists (DAs), ropinirole, pramipexole and rotigotine and their brand name counterparts. The risk increases with higher doses and longer use, but it can also happen quickly on a low dose. It did with me.
If you use the search function and search for 'augmentation' you'll find endless posts and replies about this phenomenon. I get the impression that at least half the people that become a member of this forum do so because they are struggling with the effects of augmentation and don't know what is wrong. And neither do their doctors.
Sour cherry concentrate and magnesium helped me with rls
Hi Eleanor1990. l take magnesium. Thanks for the tip about the sour cherry concentrate.
Stay strong Micafe. You are not alone. That feeling of dread at night is common for us Nightwalkers.
You are still suffering augmentation so that is why you are still in a difficult place. I promise it will get better. As you slowly reduce the Ropinirole, the RLS will get worse and settle for a while and eventually when you’re off it completely, you’ll find other meds will help and you’ll feel much stronger.
Are you taking anything to help with the withdrawal symptoms? OxyContin or tramadol can help .
Also ensure your serum ferritin is above 100 as this can reduce withdrawal symptoms and can help RLS long term.
I try to distract myself at nighttime by watching a series on Netflix or Amazon until I am so tired I can’t keep my eyes open. Don’t think about it too much- it just makes it worse.
If you can get hold of cannabis- that can help the RLS and make you sleepy. Ask your doctor for a small supply of clonazepam as it can reduce RLS and help with anxiety.
Thinking of you.
Hi dearJoolsg.
I'm not coming off Ropinrole yet, still taping down Lexapro . It's been a very slow process. I'm taking iron but I haven't had a blood test in several months so I don't know how things are now. I expect to see my doctor in a couple of months.
Joolsg, my Dr. refuses to prescribe Clonazepam. It seems ALL doctors here decided not to prescribe that medication. It was the ONLY thing that helped me sleep.
Not even my oncologist, who has been very understanding, wants to prescribe it now.
Sometimes I wonder if in this crazy world they just want people to suffer... I know it sounds terrible... but what other explanation is there?. Sorry, I'm starting to cry again. 😢
Take care.
Will anyone prescribe you Tramadol short term?
Do you have a room in your house/flat that you can make into a snug for nighttime? Like Jools suggests, you could stay up doing stuff that distracts you without worrying about keeping anyone up, and without trying to stay in bed when that might frustrate you even more. Keep a pillow and blankets in there so you can fall asleep if you can.
It's only my husband and me here and he sleeps very well all night. Whenever I can't fall asleep or wake up in the middle of the night and can't go back to sleep, I don't stay in bed because that makes it worse. I usually come to the computer, play games, and do research about a lot of things online. I just love doing that. I have learned a lot of interesting things . I also don't take naps during the day.
My heart goes out to you. I totally get it. I get severe migraines, but I would rather have a night with my worst migraine than a night with RLS.
Thank you. I would rather have ALL my pains together. At least there is something called "pain killer". There is nothing called "RLS killer" 😳😞
Agreed. I have found within the past month that tramadol has been helpful with my RLS since ropinirole has caused me to experience augmentation. (I take 100 to 150 mg of tramadol each evening.) Unfortunately, my dimwit doctor refuses to prescribe it to me, so I am leaching off of my husband's prescription. (I guess my doctor thinks I'm going to get high on tramadol - good luck with that.) We inevitably run out before the month is up.
It looks as if doctors ... Or is it the FDA?.. want people to suffer. I cannot get a prescription for Klonopin anymore. That's the only thing that helps me sleep. My previous doctor prescribed it to me, no problem. I still have some left. I never take the whole pill and I don't take it every day, only when I can't fall asleep after several hours trying. I divide the pills in four pieces and take one when I need to.
My mom used to take sleeping pills and her doctor always told her that one night without sleeping was far more dangerous than the pill.
Hi Micafe
Like you I also have times where the pain is just so unbearable and along with very little sleep, I will have times of just breaking down and crying. I have tried to explain to my family how painful it is but they just don’t understand which makes the whole emotional roller coaster very lonely.
Hi Robyn, I don't think anyone can really get it unless they have it. It's impossible to describe, and you're right, that can make the whole thing lonely. My friend lectured me the other day, after I'd spent days without sleep while waiting for my new prescription, in terrible pain and distress, that I was going to become an opiate addict, that I had no control over that and that I definitely should not be taking it, that it was better not to take anything. I did well to change the subject and made a mental note not to explain to anyone else in the future because they cannot understand! But we all get it on here, we get what you are going through.
I am right there with you. I came off of Mirapex in June and had 17 days with no sleep, sobbing, horrendous spasms that even moved up into my arms. My husband said, jokingly, that I looked like something from a horror movie when my arms would spasm. I finally stabilized a bit and went onto a Neupro patch, but I still have times every day when my legs spasm to the point that i just get teary and want to just close my eyes and not wake up again. When I think about the fact that this will get progressively worse as I age and there is no solid fix - not to cure it, but to just control it consistently - it is just so ovewhelming. After taking me off of the Mirapex, my newest neurologist told me I can now take .5mg of it once or twice a day to help control the spasms - this after I had be put on too much of it by one of her partners and had augmentation. I decided after that to go to my PCP and ask him to manage my RLS. He put me onto Tramadol and that seems to help with getting some sleep at night - sometimes, as every night is different. I am waiting to see if I can get an appointment to be seen in an RLS specialty clinic at Johns Hopkins in the hopes that they have a different twist on how to manage the RLS. I just started on Medicare this month and don't know yet what the Neupro patches will cost me - they were an $80 co-pay with my previous insurance. Dealing with RLS is just so consuming!
That sounds so awful Tobias. It's heartbreaking to hear what everyone is going through here and it's incredibly frustrating that some in the medical profession won't help. My wish is that you are able to find those that will. I hope the new clinic will do better for you. Don't give up hope. Keep banging at those doors and one will open.
Perhaps we should start a thread that allows us to list helpful doctors in different countries?
in reply to Tobias10
As you are having problems during the day by using the Neupro Patch i would say you are augmenting on the patch, which after you augmented on Mirapex, its wiser not to take another dopamine med. If you think your insurance will be a problem cost wise for the patch i would start to wean off the patch , yes you will have withdrawals, but as you have Tramadol , that will help with the withdrawals. Also you can take Gabapentin aswell that seems to help also. Jools , can you give some more advice for Tobias10 .
Tobias, Elisse is absolutely correct. You should NEVER have been put on the Neupro patch or told to take Mirapex again. You augmented badly on Mirapex and went through horrendous withdrawal ( been there too) & a doctor with knowledge of RLS would never put you on another DA or advise you to take Mirapex as needed. Out of the frying pan , into the fire.
If you can see someone at Johns Hopkins- do. They have some of the top RLS experts and will prescribe the low dose opioids that will completely resolve your RLS. Methadone or Buprenorphine are the best options and are safe and effective at low dose. They’re also very cheap meds so insurance should be no problem.
Tramadol is better for you now until you can see a neurologist who knows the basics of RLS. Get off the patch and the Mirapex again now. It will be the same as your last withdrawal and you may need to take tramadol every 4 hours during the worst of withdrawal.
I’ve attached links on Augmentation and the opioid study at Massachusetts General hospital.
You will realise that most neurologists are not knowledgeable about this disease and we have to educate ourselves. Consider buying ‘clinical management of rls’ - it’s easy to read for a lay person. I’ve added the link for Amazon- I’m sure you can buy it in the USA as well.
mcusercontent.com/068feaf31...
sciencedirect.com/science/a...
rls.org/treatment/managing-...
amazon.co.uk/Clinical-Manag...
The sadist part of all of this is that I live in Pittsburgh and have worked at UPMC hospitals for years. UPMC has the market cornered pretty much on many practices, including neurology. UPP Neurology has more than 30 neurologists and many of them list in their biosketch that they specialize in RLS - but they really don't. I know almost as much or maybe even more than most of them that I have seen over the past 20 years. When my last neurologist took me off of the Mirapex cold turkey and put me on the Neupro patch my PCP asked "do you trust this woman?" and I replied "I don't know know as I've only had 2 virtual visits with her online and have never met her in person, but when we talk she is on her computer looking up treatment options as we are talking because she doesn't know what else to suggest other than Methadone". I did start on a 2mg Neupro patch and after a week had little or no relief so she bumped me up to 4mg. I have since weaned myself down to 2mg and hope to stop it altogether this month. I am not convinced that it is really giving me any relief but the only way I might know for sure it to stop taking it altogether. Her last suggestion was to "play with your medications". This did not make me have warm fuzzies about her ability to treat my disease.
Absolutely. You can’t play with dopamine agonists.
You can cut the patch in order to reduce more slowly and then seriously consider the Methadone.
Read Dr Buchfuhrer’s Q & A page on his website and you’ll see that Methadone and Buprenorphine are his preferred safest choice med for RLS as the risk of addiction is lowest and low doses can be very effective.
It certainly isn't just you that cries of an evening, you are not alone, there are many of us who suffer this awful condition and I think that it's only another sufferer who understands. This year this forum got me through augmentation and advised me on medication. My consultant eventually agreed to give me Tramadol (via my GP) when I told him I had used this site and that I had emailed Doctor B in America and it was his suggestion I use an opioid. I was told "there is no cure" - over 30 years I have tried every mediation allowed in the UK. Every day varies, some nights I get 3 hours unbroken sleep, another night 1 hour and I now just sleep on demand when this monster lets me. Reading entries on this forum everyday keeps me informed, I hope that it helps you too. Thinking of you.
Hi Micafe
I have just read your post and just want you to know you really aren’t alone in this . I went through terrible augmentation and really didn’t know what was going on with me . I tried to explain to my family and they listened of course but I think unless you experience this , you really don’t understand. I found this site and am so glad that I did . Some very knowledgeable members took their time to explain that I was suffering from augmentation.
Like yourself I have other serious health issues and have survived cancer twice in my life . I have recently had medications changed and started on pregabalin 25 mg initially and started 50 mg this week . I do get slight restless legs but it is considerably better . Augmentation is horrendous- you wouldn’t let an animal suffer the way that we do whilst experiencing this . I remember lying on the lounge floor one night thrashing about . It was about 11.00 pm and my husband just didn’t know how to help me . In the end he watched tv and left me to it . I think he was really shocked and upset to see me like this and felt helpless.
This will pass and you will feel better . I like yourself went through a stage where I dreaded bed time . I tried all the relaxing things which people suggested but nothing seemed to help me . It was hell and I felt so alone until I found this wonderful site . It really helps me ❤️
I know I have to live with RLS. There’s no miracle cure as yet but I live in hope . I try my hardest not to get down . My mum is terminally ill too and I get so upset about losing her . I value everyday I have with her even if it is only by a phone call at the moment .
I focus on all the good things in my life - my husband who I met at 17 , my beautiful daughter who has survived cancer herself, my kind lovely son who reminds me so much of my late dad , my cheeky 6 year old grandson who can wrap me round his little finger !!!!!! My beautiful incredibly strong mum and my two labradors - the youngest who hates me texting is trying to knock my phone out of my hand as I am paying no attention to her . They give me so much joy .
I think what I am trying to say is yes try and sort your RLS out alongside advice from this forum and your GP but also don’t lose focus on all the other lovely things in your life . Don’t let it beat you .
Remember there are so many people here to help you with advise or just to chat to . I wish you so much luck with coming out of augmenting . You can and you will do it !!!!!!!!!!!!!! X
Dear Esme2007... You're going through so many things... Sorry to hear about you mom. I saw my mom suffer a lot for many years. She had emphisema, also a very cruel disease.
Your youngest labrador hates you?? Ha ha ha.. 
. I doubt it. Those are adorable dogs. I love them. All of them. Well, the truth is, I love all animals. As someone said once "If having a soul means being able to feel love and loyalty and gratitude, then animals are better off than a lot of humans."
Dear Micafe, I am so sorry to hear that you are feeling so desperate. I think really the only people that can possibly understand are those who have or are suffering with this evil disease.
I’m sorry I can’t give you any medical advise, but just wanted you to know that we are in this together. You are never, ever alone, although it feels like it sometimes, especially in the middle of the night.
Sending you big hugs x
It looks like your chief concern is the Lexapro withdrawal. These are NASTY drugs! A leading discontinuation symptom is crying. Here is a strategy that a friend of mine used to get off Effexor - a particular nasty antidepressant. It's called the prozac bridge. psycheducation.org/prozac-b...
Yes!, DicCarlson. When I went online to see what the Lexapro withdrawals were, I almost couldn't believe it! It was exactly what I was feeling. I showed it to my husband and I asked him: Does this sound familiar? He looked at me in awe and said: Yes! 🤔😯
At least now I know what is going on and I can be sure that when I'm done with that medication, I'll be my old self again. 😊
Hi Micafe,
As you can see, you are NOT alone. I too cry uncontrollably and dread my bedroom. I can’t even go in my bedroom during he day without feeling that dread in the pit of my stomach. I am currently searching for a therapist to help me overcome the horrendous psychological effects of this unmerciful disease. You have overcome a great deal and you will overcome this too.
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