My rls is getting worse, thru the day there is no let up to allow me to rest for the night ahead, my emotions are all over the place and im extremely teary, im just so tired, my ropinerol just isnt working so im gona speak to the doctors about suggestions on here about opioids and gabapentin, all meds iv recently weaned off 😞
Exhausted : My rls is getting worse... - Restless Legs Syn...
Exhausted
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silleecharle
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Get a doctor's appointment as as you can and start to get off the ropinerole with help of a pain med like tramadol wean down slowly. I am sure you have seen other posts on here where members are detoxing from their dopamine med. Just PLEASE do not let your doctor try to up your ropinerole dose. You will not get any relief from anything else to try to do because you are augmenting from the ropinerole until you get off the ropinerole nothing will help.
Madlegs1 in reply to
Read back on your previous posts and the answers - it's all in there.
Mind yourself.
johnnky in reply to
My RLS is manageable, I take up to two 200mg slow release tramadol for back pai, then began using a REVITIVE foot massager for Edema. If I forget to use the Revitive just before bed my RLS is so uncomfortable I have to get up & have a ten minute session then all is OK. The Revitive was a suggestion from my son's wife, a nursing sister. Only for the leg swelling. it was just a happy by product that my RLS was helped. You might be lucky too, worth a try.Cheers.
I put an awful nite in again last nite and thats with my nighty dose of ropinerol, il definitely look into ur suggestion, il try anything to get ease, mine is getting so much worse 😞
Also make an appt. with a chiropractor. They deal with RLS and the nerves that run thru your spine. Also check out rlcure.com, which has some very good explanations and advice, using alternative supplements, on the chemical imbalances that cause RLS. I have had very good results with both of these treatments - chiropratic to straighten the spine, eliminating the inflammation, hyper-irritability and malfunction of the nerves, and certain supplements to balance the chemicals in your body (histamine, glutamate) and address the inflammation. Together they work well.
Im seeing a chiropractor atm, he says im in a bad way, my head is an inch forward on my neck adding 10lbs to the weight on my shoulders, the damage is the same as severe whiplash, the lumbar region has a lot of nerve damage, overheating and sensitivity, im getting intense treatment so im hoping for improvement on some level soon
Good luck to you! Also check out rlcure.com An Absolute Cure for RLS. There is good info on the causes of RLS (the inflammation, histamine and glutamate) and alternative treatments for for them. I have found them to be very helpful.
Do u take any supplements?
The most helpful ones I have found areas follows: l-theanine 100mg, taurine 500mg (both help with lowering glutamate which is a stimulant, as well as raising GABA levels which is calming); quercetin 500mg, bromelain 500mg (which are both anti-histamines, histamine being overstimulating and causing inflammation.) I also take calcium capsules (as I am lactose intolerant), magnesium caps, b-complex and vitamin C. These I take sometime before bed.
If I wake up, which I usually do to go to the bathroom,( a full bladder pressing on those nerves seems to irritate,) then I have ready the theanine, taurine, quercetin and bromelain. Also, theanine can be bought as a dissolve- in -the- mouth tablet, but it is expensive that way. SO, I just open a capsule of theanine and let it dissolve under my tongue. It does not have a bad taste (I use the Vitamin Shoppe brand) and gets into the system quickly. I do this to make sure I can get back to sleep quickly and to ensure that just the act of getting up does not stimulate my system.
But, let me tell you that during my bad bout of RLS caused by the sacroilliac problem, I took the supplements but they hardly helped longer than an hour or so. Then I took more, which helped again for awhile. (Before this had all happened, they had been very helpful.) Which is why I am sure there are both structural and internal chemical causes of RLS.
The website I mentioned has great info on those chemicals/neurotransmitters -what causes them to be out of balance-how to counter them, BUT it does not go into the structural causes/irritation. That is why I am speaking out about chiropractic and my experience with RLS. If the nerves are being irritated/inflamed by the spine out of place, the supplements can't help enough until the nerves are released.
Oh, and Fish Oil. This is very good for inflammation. Can't take too much of it.
I take fish oil daily, il look into those other supplements, thankyou for ur help uv really got me thinkin as my last few esr blood tests showed high inflammation levels, iv looked over ur recommended website and its very informative, hopefully the treatment im gettin at the chiropractor helps relieve the pressure on my nerves, iv another 4wks of treatment then he will do more scans to see if its helping, fingers crossed
Also, I do take the supplements once or twice, depending, during the day, so as not to let either histamine or glutamate build up and become too much by nighttime. Good luck to you and let me know how things are going.
Thankyou, im off to see my chiropractor so this will b my 5th visit, hopefully the nerves and inflammation start to settle cause I had a terrible nite last nite again, my body feels its gona shut down with tiredness
in reply to lauraflora
silleecharle is having augmentation from the dopamine med, SO, nothing you are suggesting will work until silleecharle is off the dopamine med and gets through the augmentation.
however, some of those supplements cannot be taken if you have thyroid condition, so as always check with your doctor.
There is no Absolute Cure for RLS. You certainly have suggested this site many times. We have to consider the source on that site, and while it has some interesting theories, the "absolute cure" does not exist yet...................there are treatments and some of his ideas might work for some people, but not all. I know the web site very well, so I take it with a grain of salt, especially the blog section.
in reply to lauraflora
Glutamate is not a cause of RLS, but it does cause insomnia. We have to be careful what we read from a non scientific website.
You are speaking for me as well. I found myself doubling my dosage of Gabapentin. Prior meds prescribed did not work for me as my body could not handle them ( sinemet, pramipexole and tramadol.) I doubled up on calcium and magnesium (in the a.m. and the p.m.) along with iron and I smoke marijuana so I can sleep and it's working.....
Sillicharlie unfortunately it does not matter which supplements you take, what your inflammation levels are, how often you visit a chiropracter if you are having augmentation from the Ropinerole nothing short of getting off the Dopamine Agonists (Ropinerole ) is going to fix you. Take the advice Elisse gave you she knows what she is talking about. .Pipps x
Pippns and Elisse are correct. if you are augmenting on dopamine meds, it is sometimes likened to cocaine withdrawal, and while going thru it, your RLS is going to get worse while you are withdrawing. Once you get thru that process, then you can figure out better what helps and what does not.
OK, nevermind that I myself have had sucess with managing my RLS with both chiropractic and various natural supplements. And so have others, as well. I'LL SHUT UP! I was only trying to help some other people who sound as desperate as I once was. I am not an expert, but I have my own experience of RLS and what works for me and I thought it a fair and kind thing to pass on some info for people to look over and try if they want, rather than keep it to myself. BUT, it seems that there are several people who object to me doing that. Go back to your drugs! Anyone who does decide to give these things a try, good luck to you, and I mean that. Time will tell. One does not have to have credentials in order to have information that can actually be helpful.
No please continue You are clearly much more knowledgeable than your detractors who no one pays any attention to anyways. I will be trying all that you suggest.
in reply to Whitebuffalo
Not sure who you are referring to as in no one pays attention to anyways. But, if in anyway you are referring to me, then dont.!! You also need to read the rules of this forum.
I assume that you are including me in your group of "detracters " if so please don't! You can only speak for yourself as you have absolutely no possible idea who does and does not pay attention to anyones post Nobody is forcing anybody to follow suggestions on here so quit trying to cause trouble on the group.
Thank you! Good luck and I hope something helps you too.
in reply to lauraflora
Ermmm, have you ever gone through augmentation from a dopamine med..? If so, then you should know that you HAVE to get off the offending med and through the augmentation before ANYTHING else will help, whether that be another med or what you are suggesting. If you havent gone through augmentation then you obviously have no idea how that it should be dealt with.
Please do not disrepect people on here who have no choice but to take "drugs" you dont know them, and you dont know their history.
lauraflora in reply to
I am only telling my experience, and yes, that there is other info out there other than drugs. i am not being disrespectful, and no, I have never gone thru augmentation. I am not telling them how to deal with augmentation.That is up to them and their doctors to work thru.
However, I feel that if they wish to take a different approach, which is up to them, not me, that is their choice. Since I have had success with these two approaches (chiropractic and natural supplements) I am passing on the info to others who might like to look into it. I'm sure most people would be glad if someone told them of 'what worked for me', rather than keeping it quiet and not saying anything. One never knows where good info might come from.
Lauraflora, Nobody has told anybody to SHUT UP that I can see? I have no objections to you posting whatever you want to post and it is up to individual members to decide for themselves what they want to take from it. However I do strongly object to the comment made by you and I quote "Go back to your drugs! ".This is a SUPPORT group and a high proportion of members have no choice but to take medications in order to live any sort of a normal life and by normal I mean they are able to keep still long enough to at least get a few hours sleep at night . For many myself included the meds are a last resort after trying everything else first to no avail. Some of us need to take strong painkillers and there is enough controversy and prejudice from the outside world surrounding those who need to take this class of meds for members to deal with. Therefore I am extremely disappointed that you have brought that sort of attitude into the group
OK, I apologize. I was trying, with my original posts, to be helpful, in making suggestions to people who sound rather desperate, as to what sort of things have been very helpful to me, and info I had come across that I benefitted from. I was dismayed and, yes, rather angered that some people seemed to take a rather dim view of anything I said. No one told me to shut up, I said that myself. Also I felt that those same people were being critical of my alternative medicine treatments - supplements and chiropractic - and that they felt that drugs were the only things that would work, for anybody. I felt that perhaps I was on the wrong site and should find one where people were not closed-minded about alternative treatments. After all, most of the posts mention the names of a whole panoply of drugs. I thought this was perhaps the RLS/drugs site, and I should have searched for the RLS/alternative site.
Perhaps I was over-zealous in my posts. I am sorry about that. However, I do stand by alternative treatments and do feel that it is reasonable for me to speak up about them, as there may be people who have never heard of them. Perhaps they have only been prescribed drugs and are unaware of other treaments. Some of them may be only recently diagnosed. Most people would agree that if one can avoid taking drugs (for whatever ailment) that is preferable. But one has to know what else is out there, and, perhaps more heartening, what others have had success with.
As for myself, I have had RLS for almost 50 years - yes, that is right 50, since I was a child. I have had ups and downs with it, times where it was not too bad and times where it was terrible. The last 10 years it has mostly been constant. I was offered drugs, but did not take them. I sought alternatives, as I do for most other health issues. (Not all, nor am I stupid in respect to, for instance, emergencies.)
I originally just felt that perhaps some people might benefit from - at least - hearing about someone else's success with alternative treatments. And so now, I decided to not shut myself up, at least to explain myself and perhaps soothe those whom I have - unintentionally! - upset. Whether I continue on here is another matter. Maybe, maybe not.
.Like you i have had RLS for many,many years.I spend hours every day on my group and others trying to help other sufferers and i agree theres a place for non med as well as med treatment.No one size fits allHowever when somebody is showing all the signs of augmentation there is no option but to get off the dopamine agonist .I have stayed up more nights than i care to remember with my members going through augmentation literally on suicide watch so yes i will react strongly and encourage that person to seek a doctor to help them ..Let us all move on now as i am sure we all have the same aim to bring some relief to anyone suffering this wretched condition
in reply to lauraflora
If you looked through any of the posts on here, you would see lots of members post what works for them. And its not all drugs. I was trying to help someone on here who is going through augmentation and all what you were saying would help, would not help that person. Hence is why i spoke up.
Iv done some searching on augmentation and that is most definitely wot is happening to me and coming off the ropinerol is my number 1 thing to do unfortunately my doctors appointment system is awful so I'll hav to wait at least 2wks before I get to see my doctor, I really appreciate everyones advice on experiences theyv had with treating rls and il giv wot I can a go as im at the point of exhaustion and barely able to sleep, I fear the night time coming because I know wot kind of night iv got ahead of me, thankyou everyone for ur help and lets not bicker as we are all on here with one thing in common, trying to help other sufferers of rls xx
Silleecharle i have been trying to help you as i know you are going through augmentation. I can only tell you what i have learnt about augmentation and how you deal with it and my information comes from the RLS experts. I am sorry you have to wait so long for a doctor's appointment and i am sorry you are suffering from the augmentation. I still will say nothing will help until you get off the dopamine and you get through the augmentation. Your dopamine receptors are going bonkers and are actually asking for more dopamine which of course is the worse thing to do is up the dose. To calm those receptors down you can only do that by getting off of the dopamine and letting your receptors get used to not having the dopamine you have been giving them by taking the med. BUT you have to do what you think is best for you. 
Always do what you feel is best for you. Some of us have decades of experience in researching and studying RLS. And, YES, the first step to silliecharlie's "TREATMENT" right now is to get over the augmentation, which can be wicked. Until you get thru that process, no chiropractor is going to help those neurotransmitters until they have calmed down asking for more dopamine, which is what they are doing. This comes from unknowing doctors prescribing too high a dose of the dopamine meds for RLS patients. They seem to get the Parkinson's doses mixed up with RLS doses, and therein lies the issues. So, after you get through the withdrawal, the NO ONE is telling anyone what they can and cannot try. I prefer science, and certain web sites are manically put together, and many if us have dealt wit Mr Wimble here and way before this group. It is not just some of the members who have studied that web site at length, and I know it by heart, there is a reason, the "consulting services" for which on had to PAY to "some" guy who set p this web site. I do not like the disrespect he has for the front line researchers. There are a COUPLE of things that make sense, in theory, on there. There are no studies, it is simply that one doctor, maybe 2 now, that compiled a bunch of info and drew a conclusion, which is how things start. But, that i not a scientific web site, and I have been into it in detail. So, when silliecharlie is done with augmentation, which is HELL, inflammation is not the cause of that in his case. Not NOW anyway, his issue is he is doing something very difficult and with not much help from his doc, so that is a concern. Many people have tried supplements and chiropractors with some success. the chiropractor will keep you coming back and back, and also not covered by a lot of insurance, and for very good reasons. On 20 years, I can count on one hand out of about 6,000 people, the number of people who have had an success with calming RLS down in that manner. There are always exceptions, but I spent way too much time on Mr Wimble's page over the years, and he was not happy when he took his counseling services down, but he knew he had not credentials and no authority to charge for sessions. That was my main issue with him, and it has been a decade or more of dealing with him. So, yes, lots of us have to take drugs for survival, and in 45 yrs of RLS, I have tried everything to stop it. So, I will take my meds which control my RLS 90% of the time to have some quality of life and some sleep. Also when handing out advice, NONE of us truly know what the poster's other health issues might be, so even when a person says take this supplement or that, some supplements CAN be as dangerous as some drugs for the individual sufferer. In the end, we do what we need to do to survive, and no one is ever going to have the same list of things that help them, rarely.
Just a quick update, iv got a doctors appointment (as expected) in 2wks time to discuss my rls and augmentation, it's definitely what im going thru, again last nite like every other day and nite before I have been demented with severe leg and arm movements, I finally fell asleep but my husband said my arms and legs went crazy thru the nite for at least 2hrs, I cant go on like this any longer, I need off the ropinerol, il keep you'se posted on what my doctor suggests, thankyou everyone, I dont feel so isolated when im struggling cause of u guys xx
I am glad you got your doctor's appointment. Hopefully, he/she will be of some help during your difficult time right now. it DOES get better, the augmentation,, it is just getting to that point which can be very hard. Just keep saying to yourself it will be worth it. I also have done all nighters with people coming off the dopamine meds, and it is not easy. But, we are strong already, we know that, because we have lived thru decades of RLS and we still want to fight the beast. So good luck! 
I feel like one of those people who are on the verge of loosing it, this is my 3rd day and nite of no sleep and my mind is mush, I refuse to wait the 2wks to see my doc sk im phoning in the morn to request they call me to home but can I ask ur advice, which are the best meds to help me thru augmentation, it's so im armed with information and not given another tablet like wot im on, im desperate
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