Please, please HELP ME, I am going crazy and I literally don't think I can handle this for one more freaking night!!! Within the last three weeks my longtime case of usually pretty mild RLS has suddenly kicked into high gear and I am going out of my MIND and want to just squirm right out of my skin, I am SO MISERABLE!!!! I haven't changed my meds at all and I don't know what has made this rapid and unmanageable change happen but I can't sleep at ALL, I am up pretty much all night long every night, and then sometimes I can crash during the day while my son is at school, but it's still awful and it doesn't last more than an oft disrupted hour or two at BEST… I can't go on living like this, it is the worst feeling, what do I DO??????
Help!!!! : Please, please HELP ME, I am... - Restless Legs Syn...
Help!!!!
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Annie2133
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Hi there. I'm so sorry to hear you're going through such a bad time. Have suffered severe RLS my whole life so I can relate. Do you mind my asking what meds you are taking? I know sometimes my RLS will just flare up and I will go for three nights of no sleep no matter what I do
Thanks for replying. Ok, so I take Paxil 40 mg 1 a day, and Busperone 30 mg 2 × a day, and then Guanfacine 1 mg 2 × a day. I've been taking the Paxil for over a decade, the Guanfacine for about 4 years and the Busperone for about a year. I used to take Xanax .05 mg 4 × a day, for over 5 years, but I switched Psychiatrists when mine moved to a different state, and my current doc doesn't believe that anyone should be taking a benzo over more than a brief period of time, and so he tapered me off of them, and that's where the Busperone came in. My anxiety has been obviously MUCH worse, but I've decided to embrace this new way of thinking, and so I go for a lot of walks and do a lot of reading about alternative ways to treat lifelong anxiety and panic attacks, ughhhhh. I thought I was doing ok, until this RLS thing just started to absolutely devour my nights, my every attempt to relax, etc, hence I am up right now, in the middle of the night, jealousy imagining all the peaceful ignorant sleepers, out there, and I hate my life right now. I have a little boy, he's 7 and I'm all he's got so I cannot keep declining before his eyes, like this, it's so unfair for him. Thanks again for responding.
~ Annie
Oh man I feel your pain and I have just started to realize at the ripe old age of 57 how RLS is robbed me of so many things in my life. But I still live in Hope. I just joined this community last night and already I have learned so much. Annie do you have a neurologist you see in addition to your GP and a psychiatrist?
Also wanted to say I really relate to what you were saying about peaceful ignorant sleepers. I feel like that especially when it's winter and I'm pacing around my house staring out the window at 3 a.m.
Annie, I feel SO bad for you! Keep reading here; there is a wealth of information from fellow sufferers of this dread RLS. After many months of inability to sleep, my symptoms were stopped dead in their tracks when I found a doctor who was willing to prescribe low-dose (5 mg twice daily) methadone. Until then, I was finding great relief using powdered kratom - but because of a gradually developing tolerance to it, it only worked for about a year or so. Kratom is available online for about $75-100 per kilo, which isn't too expensive, considering that you would only use a few grams per dose.
Thank you so much for your response. I'm going to look up the Kratom online to try!
Sorry to hear about the situation you find yourself in. I see you've mentioned medications you currently take, do you take anything else, any RLS-specific medications for example (ropinirole/requip, pramipexole/mirapex, or rotigotine/neupro patch)? Do you consume or avoid knowd RLS triggers (alcohol, caffeine, sugars etc)? Have you had your blood checked for ferritin levels?
I am now trying Neurontin, and I hope to God it will help. 
Hi Annie, I completely understand, it truly is like torture. I only joined this sight yesterday and already I have been given lots of helpful advise from fellow sufferers. Keep reading and remember you aren't alone, although I know it feels like it in the early hours.
Are the worsened symptoms coinciding with your discontinuing Xanax? It’s not clear from your post exactly when you stopped taking Xanax. Although benzodiazepines are not regularly used to treat rls, yours is not the first account I have read of people reporting that they had years of relief from rls while on benzodiazepines and it has come on very badly when their physician changed their regime to exclude the Benzo. Discontinuing a benzodiazepine seems to be capable of inducing unpredictable results.
Have you had your serum ferritin levels checked? Your GP can do the test. Low iron levels can be associated with increased rls symptoms and raising iron levels results in improved symptoms in at least 50% of cases. If your serum ferritin is below 75 (make sure to get the actual figure - not just that you are ‘normal’) you should start a supplement. Rls experts in the US very often treat with iv iron infusions nowadays.
SSRIs such as Paxil are known to worsen rls and it may be that you need to re-jig your drug regime either to replace the SSRI or to find something to do the job your benzo was previously doing of covering the rls symptoms.
Be very cautious about commencing any rls drug from the family of dopamine agonists (ropinerole/requip, pramipexole/mirapexin and/or rotigotine/neupro). These mostly work really well to start with but have disastrous consequences long term. Many, many physicians are not aware of the downsides of these drugs yet and continue to prescribe them for rls which leads to great hardship for their patients long term.
With rls there is widespread ignorance in the medical community about treatment and it’s importamt to educate yourself to ensure the treatments proposed are not going to be harmful ultimately. In your case the fact that your physicians didn’t take your rls into account when discontinuing the benzo - especially given you are taking an SSRI - suggests they aren’t very knowledgeable about Rls.
You are clearly in a pretty bad place at the moment. being constantly woken by rls is akin to torture. It is often difficult to get your physician to recognise how utterly awful it is.
Kratom might afford you some temporary relief while you find a better solution but in your case it probably isn’t an optimal solution long term.
I go with this Annie ... in the end after very little time, the dopamine agonists begin to create a monster called augmentation which is like RLS but involves every muscle in the body in the end. That’s where I am now. I have to come off the drug Pramipexole but have been told it can take up to 10 months . It’s a real minefield and everyone reacts differently to drug regimes. Good luck ... hope all goes well Lots of help and encouragement here Thankfully
Hi Annie, welcome.
Obviously you are in the US. Your situation with the various anti-anxiety meds and quickly emerged raging RLS is not a straightforward one, although you will read on here accounts of many others with both anxiety and RLS. And please do heed involuntarydancer's warning about the SSRIs and other meds or their withdrawal causing or aggravating RLS symptoms.
You need knowledgeable help. I suggest you get in touch with the US-based rls.org. If you can afford it, their annual fee is $35, but even without that they have loads of information available. The most important thing right now is that they have a list of RLS quality care centres and can help you to find one near you.
Finally, have a look on the treatment page of rlshelp.org. This page is maintained by the very knowledgeable and helpful Dr Buchfuhrer. On the treatment page he discusses endless lists of meds and their use for RLS or their negative effects on RLS. Look up your own meds there. It helps tremendously when you have at least some basal knowledge about your RLS and its treatment and your meds when you talk to a doctor. Obtaining the information make take your mind off, though. I found that that could help tremendously for a short while, provided there was enough of a challenge and captivating part in it.
Good luck. And never hesitate to ask more questions. Or simply to moan or rant. You're welcome.
Hello Annie, I'm so sorry to hear of your awful experience.
Many on this forum have experienced RLS as you are doing now, but it's difficult to imagine how it's affecting you in your situation. It's also difficult to imagine how your RLS has so suddenly deteriorated.
Normally, you'd expect that something has triggered your RLS, in which case eliminating the trigger would help. If nothing has changed for you then I guess that's not possible.
In which case, it seems that you have crossed some kind of a threshold.
As others say, Praxil is a class of meds known to make RLS worse, but I see you've been taking it some time. Even if it were possible to withdraw from it, realistically, I wouldn't expect any immediate improvement from simply doing that.
I note you've withdrawn from benzos. It's true that in the long term they're not just harmful, but also of no value.
Your need is however, immediate and although it may mot eliminate your RLS symptoms, using a "Z" drug, such as Zopiclone might enable you to get some sleep. This should be short term, occasional, not regular, emergency only.
Kratom has been mentioned, which might give some relief with your symptoms, but I think this a very risky option. Kratom is quite potent, but it is not a regulated medicine and you would be using it unmonitored and I fear in your desperation you could easily end up misusing it.
Cannabis would be possibly less risky.
Hopefully you're aware that alcohol is a terrible solution for insomnia, it will make your RLS worse.
Unfortunately, I'm afraid there isn't going to be an immediate solution fir you that's without risk.
Iron therapy has been mentioned and this DOES treat RLS, but this takes time. Switching antidepressants may help, but this also takes time.
I'm not going to pry into your personal circumstances. It seems you are a single mum, but obviously that's not the whole story. It seems as if you really need some support with this, even if in the short term. Have you family who can help? RLS is disabling, as if you had a physically disabling condition you need support. It's terrible to think you're struggling on your own.
Taking RLS medications is not a good option long term, but in the short term it might be a matter of survival.
Hopefully, you can think at least a little rationally about this. There are medicines that are known to be fairly effective at relieving RLS symptoms, thus promoting sleep. Ideally, they could be used short term until such time as you've had successful iron therapy or eliminated triggers. I'll try to briefly outline their relative merits.
Alpha 2 delta ligands (A2Ds) or dopamine agonists (DAs) are considered the first treatments for RLS. If they fail then opioids can be considered.
BOTH A2Ds and DAs have side effects which in some cases are severe enough that some people can't take them. These side effects can diminish in a few weeks and for many the benefits in terms of RLS symptom control far outweigh potential side effects.
A2Ds have a slight advantage if you have insomnia and/or anxiety. DAs hsve a slight advantage if you have depression.
DAs are attractive in that they work almost immediately. A2Ds have the disadvantage that they can take a few weeks to work and dosing is more tricky to get right.
The significant difference between the two is that DAs have a very high risk of major complications. In some cases these occur after years, but it can be a matter of months. Furthermore, after a while withdrawing from a DA is very difficult, moreso pethaps than narcotic withdrawal.
A2Ds are not entirely without complication, but the risk does not appear to be as high. It seems withdrawal, if necessary is not so difficult.
For this reason, major RLS organisations recommend that DAs are NOT used for RLS. Unfortunately, many doctors aren't aware of this.
For information, DRs don't tend to mention A2Ds or DAs, they just tend to give drug names.
Typical DAs are pramipexole (Mirapex), ropinirole (Requip) or rotigotine (Neupro). These are US names ( in brackets).
Typical A2Ds are pregablin (Lyrica), gabapentin (Neurontin) or gabapentin enacarbil (Horizant). Horizant is available in the US but not all countries.
I hope you find this information useful.
I'm sure you may be feeling desperate and this will be adding to your anxiety. This could influence your ability to make good decisions.
There are options which may help in the longer term, some more immediate. The immediately effective options may not be the best.
I do hope you can find some practical and emotional support.
I hope you will also find this forum supportive
Annie2133 in reply to
I have spoken to my psychiatrist, now, and he has started me on Gabapentin, and if this doesn't work I'll be seeking his next solution in early December, or before, if things carry on as such. My mom lives nearby, but has her own issues, so I really try not to bother her w my stuff, if possible, as she already helps me out so much. There really have been no obvious changes in my life to explain what has caused this ridiculous sudden intensity in my RLS, aside from the fact that I'm just getting older so perhaps it's pre menopausal??? Thanks for your caring words, Manerva, I very much appreciate them, and you! Sending love and light,
Annie
in reply to Annie2133
Be aware that gsbapentin may take up to 4 weeks to start working and for RLS it may need at least 900mg. For other conditions it's often prescribed in 3 divided doses, but for RLS, it's just one - at night.
I hope this works for you.
Hello Annie I know how you feel I am Same at times I cope then it increases to level I can’t stand I done it all took drugs all stop working after mth I may get month of free from it when at it worst I could sit cry I live alone walk about my house feeling so alone It seems no cured is found just manage it Keeo with group talk always here for you love
Hi, Annie
Just to share a bit of my life experience. I am man, 68, 50-year sufferer RLS and "insomnia". Benzodiazepines (even discontinuous and maximum dose of 0.6mg) up to a certain point saved my life, and, no doubt, my professional career.
During years I took Benzo's trying to battle my "insomnia", which, 2.5 years ago I founded out was actaully a mix of UARS (upper airways resistence syndrome) and RLS. At that point time, after PSG (polisonography), and on my own care (and learnings from blogs), I started using CPAP and managing OSCAR ( free software). Therefore, these days I am able to see what happens to me night after nights), pretty much exactly: how many arousals, awakenings, wake ups due to remaining UARS, or due to RLS. Lots of improvements on life quality.
RLS is the main remaining issue; tried Pregabalin and Pramipexole, awful drugs concerning side effects. Best solution for RLS, thus far, no doubt was Clonazepam 0.6mg (strong rebound when stopped some two months ago, already alleviated now).
Currently, since some 2 months ago, I am on no medication, except trying minor doses of CBD oil 15mg. Every night I have been facing RLS episodes, tamed with EFT (emotion freedom technique; in particular, 9 Gamut), resulting in complet relaxation and usually back to sleep.
Then, trying not be biased by my case, I would suggest you to discard any trouble with UARS (you, as a slim person you could be a candidate to this, as common; anxiety and panic quite often are associated with respiratory effort drawbacks at night, as far as I studiec some time ago).
Good luck
Annie I am so sorry to read how badly RLS is impacting on your life just now.You have been given information about meds from our knowledgeable members.
I was wondering if you would mind saying where abouts in the States you live as I know many RLS sufferers over the pond who have managed to find a Neurologist who has good knowledge of RLS so it's just possible there's someone within travelling distance -or maybe could do a phone/video appointment with you.
On a practical level do you have family or friends close by who could give you some "hands on "help and support with your son just to give you at least more of an opportunity to try to sleepeven if your legs only let you get an extra half hour it all helps Are there any after school clubs /activities he could take part in? (I know with Covid some of these groups have been cancelled )
What about at weekends when your son is home all day ,is there anyone who could help out for an afternoon? Perhaps a play date at a friends house or a kindly neighbour? Could a friends parent maybe drop him off or pick him up from school? It's not shoving him out its giving you a bit more of a chance to grab a few minutes sleep.and will only be temporary.
On the antidepressant -one that is available in the States (not here in the UK ) is Wellbutrin which does not make RLS worse and in some cases can even help the symptoms. Obviously all of this is going to take time so meanwhile grab any help that you can .
I will be thinking of you
Pipps x
Calm down, take a deep breath! Ever since I started coming here I was surprised at all the people I have met with “our” RLS! And, unfortunately I have been in your shoes so I know how you feel. R U on any medication for RLS. If so it might help to talk to the prescribing doctor; he/she may need to tweet your medication. And, if you are not on any medication then please bring To your PC. Also, sometimes exercise seems to help, or even a warm bath, me? I clean my kitchen! Let us know how your doing.
Find a Neurologist that specializes in RLS. Don’t wait another day. If you don’t feel comfortable with the doc find another. Please don’t wait another minute. We can all talk about what helps us, but only a doc can prescribe the medication. I’m not crazy about docs, but if you find the right one they will help you.
Have you tried ( Hydrocodone)? It helps me a lot.
Annie, late last year I developed symptoms of RLS. Like you, the symptoms only occurred while I was laying down. I know how miserable it can make you feel when the symptoms kick in and you are unable to fall asleep. I told my hematologist about it, and she prescibed vitamin B-12. That seemed to help some, in that the symptoms occurred less frequently. But the B-12 didn't completely eliminate them. Early this summer, I developed a severe food allergy and was prescribed methylprednisolone. The methylprednisolone knocked out my allergy. And shortly thereafter I realized the RLS symptoms completely disappeared and I haven't had any RLS symptoms in over 2 months.
Hi Annie, I do feel for you - the sleepless nights are horrendous. I wonder if you have made any change to your diet? Many of us here have found that certain foods can trigger RLS. In my own case I have to be careful with dairy, very greasy foods (no more fish and chips!), caffeine and wine. Others find they have a problem with wheat or sugar. It's worth keeping a food diary for a while to see if anything makes the symptoms worse. Hope you can find some relief soon.
Check online to see what medications you are taking that can contribute to your RLS. I stopped a pain med because I found it contained caffeine, one of the culprits that cause RLS. I have Ropinirole 25mg and still had issues. I didn't realize that it was also the foods I was eating and drinking that was the main cause of my RLS. Once I switched to decaf drinks (coffee, tea, soft drinks), ate only sugar-free foods and drinks, and no salt foods, I feel so much better and no longer dread trying to lay down for a nap or sitting in a chair and going to bed at night. I hope this helps.
Hi Annie,
Find yourself a doctor who knows RLS and is willing to prescribe what you need. I have found 2 drugs that work pretty well. An Opiate, and Gabapentin.
The opiate works really well. I take Oxycodone.
The other is Gabapentin.
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