My RLS is so out of control. I've been on different kinds of meds over the years and none never seem to work for very long. My body is soo tired from lack of sleep, I'm lucky if I get 3 hours of sleep a night. The lack of sleep has caused severe depression and have even thought wht be here. I have no quality of life. I'm wore out, and don't want to go on. I don't want to hurt anyone but myself. That's only because I'm just to sad to continue on.
I'm so miserable!!: My RLS is so out of... - Restless Legs Syn...
I'm so miserable!!
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Ninny1957
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34 Replies
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I'm so sorry for your pain.
Try and have hope. I know the situation
is dire. But try, if you can, to have hope.
We can all identify with feeling like this, it’s rubbish not to sleep.
Have you had your ferritin levels checked? Take a look at the pinned post regarding iron. Getting a decent ferritin level has been a game changer for lots of us.
Are you on any medications at present?
I have tried many different meds over the years. Requip, Mirapex, Gabapentin is currently what my doc put me on, weaning me off Mirapex. I can't recall all the meds I have taken, but they never work long for me. I've tried Epsom salt baths, it's always touch and go if they work or not. I also use a couple of Hylands all natural pills called Restful legs. Also a leg cream called Relaxing leg cream by MagniLife. Both these options use to work great, but since weaning me off the Mirapex they don't do much good. Most antidepressants they prescribe me make my legs worse, it's a living nightmare. I go back to dr on Tuesday, we'll see what happens next, not getting my hopes up.
Keep at it with the gabapentin and mirapex withdrawal. I did it over the past 2 months and now I’m symptom free and my experience was same as yours. I also get iron infusions cuz ferritin was at 10.
I want to mention to you also that I cut back on caffeine and sweets it will make a big difference . If yoy can cur it out completely do it. Also greasy foods I no it's alot so start with one at a time let me no how you improve
I also have my iron levels checked. My Ferritin and my other iron levels are extremely low. That's partly my culprit, but I can't take iron tablets they are hard on my stomach. I now wear iron patches a double dose every day. No improvement yet. I've suggested to my dr I have iron injections, he says they're $1000 a shot and my insurance wont take care of all of it. I'm fighting a losing battle, I can't seem to win.
Presently there is no single solution to RLS but it’s clear that there is a chemical imbalance in the body. Absent of pharmaceuticals, it’s up to the immune system to correct the chemical deficiency. Your diet is a critical element as the body needs essential vitamins and minerals. Eat whole foods. Eliminate all processed foods and meats containing nitrates. In addition, consider optimizing your immune system. There is a natural product listed in your doctors prescription book (PDR) that optimizes the immune system. It’s a functional food. You’ll have relief within 90 days. Contact me for details
I don't know what meds you've tried, but it sounds many so as I'm no expert anyway, I won't even attempt to suggest any.
It might be a good idea to contact one of the best experts who can, and will advise you. As your case sounds urgent, you can email on this website
click on the yellow button on the left side.
This site has an extremely good reputation for dealing with RLS.
Not surprising that you're depressed, sleep deprivation just completely wears you down. When you're really depressed it seems impossible that it will ever end. It might seem that the only end to it, is to end yourself.
I hope therefore that you have sought help for your depression. This may include starting an antidepressant, but also seeking short term and long term psychological therapies. Short term may be simple counselling, just talking to someone can help. Psychological therapies will not directly alleviate your RLS symptoms, (the cause of your depression), but they will enable you to cope with them better.
Sleep deprivation is awful, I know. What has made it worse for me at times is anxiety about the consequences of not sleeping. That anxiety makes it even less likely to get any sleep.. The other thing for me is that being conscious when your body's systems are at their lowest is awful. It seems like a long dark chasm of hours filled only with dark thoughts.
I found sleep hygiene measures helpful. Some might say they're not effective for RLS, but I have read that they can be. My experience is that they can help.
The main sleep hygiene measures I've found helped are light, the 15 minute rule and using time contructively.
There is a lot of well established evidence for the effect of light patterns on circadian rhythms and hence sleep. We need as much exposure as we can get to natural light during the day especially late morning. You can even get natural light lamps, which have quite a lot of blue in them. Helpful if you can't get outside or on dull days. They're sometimes called SADS lamps.
You should avoid using too much artificial light at night and in the evening. Avoid using a PC, tablet, smartphone etc that is any backlit screen at least 2 hours before bedtime. Some devices will also let you adjust the display so they are less blue.
15 minute rule. Don't lie awake in bed struggling to sleep. This is psychologically extremely damaging. If you don't get to sleep in 15 minutes - get up. Do something for a while then try again. Again if not asleep in 15 minutes. get up again. I remember I used to lie in bed awake and twitching with RLS for 6 hours or more, struggling to get to sleep. It's the worst thing to do.
You may find that you end up being up all night. In fact, at times, I've totally given up on trying to sleep and just stayed up. It feels intuitively like the wrong thing to do, but it is better in the long term as essentially it is better to accept sleeplessness, to be up and awake than to struggle with trying to sleep and still be awake.
Then you need to do something constructive, that engages your mind but doesnt require much physical effort. I have hobbies that I can do at night which engage my mind and give me a sense of achievement.
I understand you're feeling desperate and my sleep hygiene suggestions probably seem unrealistic and trivial but in the longer term, can have some effect. Alternatively if you don't give it go, you won't sleep anyway, so there's nothing to lose
Finally, I don't know what medication you're currently on. I have been taking Pramipexole for years. I was suffering from augmentation so I decide to reduce the dose. I started doing that last September. Between Oct 2018 and Feb 2019 my sleep was terrible 3 hours if I was lucky, that's every night.
Since Feb, reducing my Pramipexole further and making sure I get lots of light in the day, my sleep has improved amazingly, better than it has been for years, yesterday - 9 hours!
I hope you find this helpful and I hope you get more support from others on this site.
There is hope
Drury2• in reply to
I TOTALLY agree with Manetva’s philosophy on sleep or inability to sleep. Like so many of “us”, I would get completely depressed when it was time to go to bed, because I was sure I wouldn’t sleep. I fought bed and sleep every night for months. I had a psychiatrist tell me to last in bed for 30 minutes and then get up if not asleep. But, I agree with the 15 minute rule...especially if you’ve been sleepless for some time. I know right away if I am going to be dropping off to sleep or if it’s going to be one of those nights and YOU will, too!
When you finally get up for the night, because you just aren’t close to sleepy due to RLS, regular insomnia, or depression, like Manerva said, try to do something where you will feel a sense of accomplishment. It might just be reading a chapter in a book, writing a letter, putting together a simple puzzle, etc.
Ninny1957, I think what we’re all trying to show you is that there are TONS of ways to deal with RLS and sleeplessness. Taking your own life NEVER is the right answer. Again we’re trying to tell you that this awful thought has entered the thoughts and minds of many of us, but you have about 1 million+ more ideas to try before you’re there. Try them! There’s a lot to do with those precious hours of life you experience in the wee hours of the night. You can do this. We are all here for you and are happy to listen and share. I am 71 years old and have had RLS since my 30s. Thank God not as bad as I have it now and didn’t require meds the whole time. It is kind of on and off. I was on Mirapex my longest time, about 6 years w/o augmentation. Then I had to get off it as it contributed to asthma that it contributed to my having! (What a kick!) After 2 foot surgeries I was put on Hydrocodone and then Oxycodone. I don’t like being on the Onycodone now, but it’s been 6 years. I have permanent nerve damage to my right food that requires it...well the nerve pain and the physical addiction (which is scary to admit. But I am on 5 mg 3xday and that’s the smallest I can handle, now. I am weening to 2/day although my doctor says I may need to stay on 3. At first it terrified me to be on it at all. But it is a necessary evil for my pain It does help RLS to some extent. I only mention this because some doctors recommend it or at least Hydrocodone for RLS. I would just recommend extreme caution with the huge epidemic with opioids today in our country.
Lastly I will say to all of my RLS sisters and brothers out there. Remember that not only Manerva’s life is of value, but each of our lives are. So it is up to us to see that we receive the very best care we can afford. We need the best doctor with the best research on RLS he/she has available. (And they ain’t easy to find!) But keep looking, go as far as you can afford to go to get the very best one. I’m all my years of caring for myself I didn’t demand the best for myself— for no good reason — I tried to drag information out of all different kinds of doctors who didn’t know 2 hoots in hell about the most important issue responsible for my quality of life. 2019 has been my year to change that!
Oh dear, I'm so sorry! As Lapsedrunner says, you are not alone. It is comforting for some to know that they are not alone, and you are definitely in good company here.
This is such a life-sucking syndrome, and one so evil that it shouldn't even exist. In addition to Lapsedrunner's medication question, can you tell us a little bit about what is going on with you emotionally (only if comfortable sharing)? This syndrome is full of catch-22's (being stressed can worsen RLS which disallows sleep which in turn causes more stress, being anxious about having RLS attacks can actually bring them on which can cause more anxiety, being depressed about having RLS and poor quality of life can worsen depression, etc.)
Please try to hang in there and have hope. Depending on where you are in your RLS journey (in augmentation or just worn out in general), this might be an almost-impossible request, but please try.
More responders will be by shortly.
(Please let me know if this makes any sense at all. My brain is on strike due to jetlag, so I can't even tell if what I write here makes sense).
• in reply to
It makes sense to me
• in reply to
Oh good; I wasn’t sure!
Hi Ninny. Please see my post that I have just made. I have just joining this forum as I wanted to get my story over to people. My solution works for me and its without medication so its easy to do. Please consider this as a very worthwhile thing to do (no meds and no tests). You could be four or five days away for a possible solution so its worth trying it. Give us updates please we are behind you and need to know you are working this.... Changed my life.... Put that bag of crisps down !! take care
Details please, Ninny.
Give us a brief history - how long, which drugs, what dose, quality of care, etcetera.
Many of us have been through this, so we might be able to make concrete suggestions if we know the details.
Hi Ninny, and all those who have RLS. GOT A STRONG FEELING CBD OIL MAY HELP ....for me quinine in indian tonic water by Schweppes in combination with leg stretches i.e standing ..hang on to something and stretch each leg out behind you VERY HARD...toes down. If all else fails source some cbd/thc cannabis and try that. You can be sure something will work.
I feel so sorry for you and even tho i havent suffered with rls for years i have still suffered. If you read any of my older posts you will see that i felt exactly like you at one stage. Please dont give up and listen to what everyone has to say on here because their advice helped me . Good luck and my thoughts are with you
So sorry to hear of your situation. I have been there and tried every available medication. I was eventually given Longtec, (only because I asked for it). GPs don`t give it willingly but the thing is it works. The first time in 40 or so years where I haven`t dreaded going to bed. I can actually lie in bed even if not asleep. I really think having this medication has saved my life. GPs start you on the lowest dose - 5ml but I found 15 mls every12 hours work for me.
The very best of luck. check out the RL Foundation website where this med is endorsed (as a last resort).
Thinking of you 
Hi Ninny! How are you feeling? Can you check in with us?
Oh I am so sorry. Please check in with us. And don’t lose hope.
Your low iron could indeed be a key component to the RLS. From the Johns Hopkins website "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency." If you are on the iron patch from PatchMD you're on the right track. It is ferrous bisglycinate chelate. You can also get this as an oral supplement from many suppliers. There is no constipation or stomach problems with this form of iron. hopkinsmedicine.org/neurolo...
Sweet heart you keep striving never give up I want you to have your iron checked it plays a big role in it ir has helped me alot since I started taking iron
Recently (as in earlier this week) there have been posts from others who have had success with different OTC vitamins, etc. One of them I am actually going to try myself. Read as much as you can in here to get ideas of things to try. Good luck and try to stay positive. I think all of us have been where you are at before because that is how brutal this disease is....
I felt exactly like you until I found a specialist (Mark Buchfuhrer, MD --please google his name) who was willing to prescribe me methadone (5 mg x twice daily). My life IMMEDIATELY turned around and now I'm able to sleep 8 hours every day.
What meds have you tried?
Hello Ninny and welcome; I am fairly new to this website and I am convinced that it has saved many persons from giving up. I was desperate until I found a Dr. who is an RLS specialist through the RLS Organization. I began iron supplementation (oral) 4x/day; now 3x/day. The brand is easy on the stomach (Slow Release Iron 45 mgm.). My iron level now is 154 and ferritin is 203; I take Klonopin for sleep 1 mgm. After a year I am now 85% symptom free. Finding a Dr. who knows and understands RLS is imperative for you. Keep in touch; there are wonderful people here/. Brica
Hi Ninny 1957, may I please ask what meds you have used that are no longer helping you in your time of need. The reason I am asking is: as I had been suffering with chronic RLS since childhood, (now 65), and ATT of diagnoses ... at the ripe old age of 48, (yeah as one can imagine I was absolutely spewin), I was also informed that I had the worst documented case in the country ... being Australia, and since being prescribed SIFROL, (for the symptoms), and MADOPAR, (for the pain), by the diagnosing specialist, I have been blissfully enjoying the results of said meds, by being 100% symptom and pain free ever since. Unless of course I do something idiotic, (albeit unknowingly), like take one of the RLS exacerbating drugs such as the anti-histamines or anti-nauseas, (ie; Stematel, Maxolin) or anti-depressants, (ie; Prozac, Zoloft). In my defense those decisions were made during the uneducated years. I have also been guilty of getting too smart for my britches by deciding to recklessly self-medicate and stuffing around with the dosages, culminating with disastrous effects.
FYI: Both Sifrol and Madopar are extremely heavy Parkinson drugs, which are known to cause augmentation, (a term that I was unfamiliar with before joining this marvelous site). But WTF .... if they work, who cares. They do for me, so I don't. Another important bit of information, should you decide, (together with your doctor), to emulate my journey, is please be aware and extremely conscious of the hideous side effects of Sifrol. Your doctor should be able to explain.
Sifrols pharmaceutical name is Pramipexole and as I am unaware of your whereabouts on this globe, in the European countries, it is marketed under the name of Mirapex. Hope my info has been beneficial for you.
Dear Miserable, I know how you feel. I have had it since I was a child and I am 78 now. Please keep your thoughts positive when you don't have RLS because there will be no benefit if you take your own life. One day you will have to answer for it. So make yourself a hobby or find out other people you can help or visit. Look for old people to help or talk to. There will be times when you don't have RLS, so during those times do these things. Sing and pray also. It may well be that you still don't sleep and have to walk the halls like I do, crying all the time, but when it is gone, be thankful. You are in my prayers Ninny1957.
Hi Ninny! In going through everyones’ replies again, I notice that there is no real mention of what some have said to others going through DA withdrawal, so I will include it here:
Withdrawal from a DA can be nothing short of Hell (sorry to be so harsh, but it’s true). This is why I think we are trying to figure out your medication above all else (which I see you say is currently Gabapentin, but with Mirapex at the same time (phasing this out) (am I correct)?). Would you be so kind as to include your current dosages?
judym57 its not wise to give out your phone number or any contact number on any forum including this one. For you own security. You can have a private chat through the forum's PM.s See a the top of the page. chat.
Ninny, I am 72 years old and have had RLS for most if not all of my life. For most of my working life I survived on 3 hours sleep (on a good night) until about 15 years ago I met a Neurosurgeon who gave me my life back. She put me on Clonazepam, Pramipexole and Codeine Phosphate et voila!!! I got more sleep. Over the years I have gradually increased my dose but they still work for me! However!!! Last year I found Medical Marijuana for pain relief - I have Osteoarthritis - and bought 100 capsules. I have so far taken about 90 (1 per night) and have had probably 88 nights sleep!! It is fabulous, so fabulous that although it is now legal in the UK, my GP cannot prescribe it for me. (Big Pharma at work here I think) If you get the chance try it - I take FECO - Full Extract Cannabis Oil which is high in CBD and low in THC so I don't get "highs", just sleep. I take 1 about 3 houirs befoe bed and sleep like a baby. Amazing. Hope this helps. Mike
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