Hi, I'm trying to find alternatives to the medication the doctor has given me, my friend recommended glucosamine sulphate ?

[shazzywazzywoo]

Does anyone use this or know if it works, (Glucosamine sulphate ?) Im on Ropinarole for restless legs...i also suffer very extreme sleep disorders such as sleep hallucinations, sleep walking and this has stopped a bit with the medication and i wondered about this being connected to each other ? thanks

[baccib]

hi: Are you taking ambien cause the syntoms you des. sound like Ambian side effects. I dropped Ropinareole for the Neurpatc and like it much better. My heart goes out to you

[shazzywazzywoo in reply to baccib]

Hi many thanks for your reply, no im not taking Ambien, just Ropinarole, which are working somewhat. My other sleep problems have been with me since i was a child, well before any medication for RLS , but they seem to have subsided a bit and maybe the ropinarole has somehow helped this also...just a thought ! thanks

[Kaarina Administrator]

Oh we can all do without well meaning friends who think they know the anwers! Glucosamine sulphate unfortunately will not work wonders. Perhaps this person would like to buy you some they will do no harm but will not help RLS one little jot. That is my opinion anyway.

[shazzywazzywoo in reply to Kaarina]

Thanks for your reply, i may give them a try , see how it goes, i read somewhere it can help, but as you say, may not work any wonders ! thanks again

[nightdancer in reply to Kaarina]

THAT I like. If your friend wnats you to try it tel her to buy it for you. It is NOT cheap at all. It was 30 bucks a bottle 10 yrs ago here in the US, and that is one months upply, si I imagine the price has gone up substantially since then.

[Hidden]

Iv been taking magnisum and Hawthorn Berrys . It has cut my restless legs by half . You knw your hear a lot off options on here , what works for one may not work for another, and if anyone says they no it all what works and what don't work then ignore them for they no nothing . Same as me . Restless legs is a tuff one because what works one week can stop working the next so you can think oh yea ths s good , then bang it descent wok no more . So each to there own . You shoud try what ever you want to , if it works do let us know . Stay positive ignore the negatives .

[Hidden in reply to Hidden]

that's so so true......

[nightdancer in reply to Hidden]

I always say "most" people or "this is what happens in studies", etc. after 17 years of this, I know enough to use a disclaimner and say every other sentence that "everyone is different". Noting works for everyone or affects everyone the same way. Try what you wnat, and if it helps, great! We haer all kinds of crazy "cures", not calling glucosamine crazy, but it is not "known" to do any good. I guess all you can do is try it and see what happens. But if you are taking Ropinerole with it, you really will not know what is helping you. And, we can only tell you or experience and knowleged we have asquired over the years. Yes, some of it is going to be negative, because not much about RLS is positive. We can agree on that, I am sure. But, if a question is asked a truthful answer must be given to the best of our knowledge and back up the fact with reputable web sites. The Federal Drug Admistration web site is as reputable as it gets.

[suzyp]

I've used Glucosamine for years(for arthritis) and still have RLS which is getting worse.

[nightdancer in reply to suzyp]

Same with my mother. Her doctor told her a few years ago , benefits of glucosamine were exaggerated a bit and the info was another lawsuit, and the FDA agrees, along with lots of studies now after long term use, glucosamine was hyped right up when it came on the market. Now years later, we are finding it does not help our joints as mush as it was claimed to . Doctors were duped and so were a lot of other people. I am in the US, so I am only speaking of what has happened here. But, generally the reputable info is true and documented. It cannot help a neurological disease and that is basic biology 101. Glucosamine was menat intially for skeletal problems, and that includes RLS. RLS is neurological, so chemically, it will not help RLS 99% of the time. I ahve to leave that 1% in there for a disclaimer. We say it evety day. What works for one does not work for another, but we do have lots of experience, and I know I can back my statements up after all these years. RLs is progressive, so it stands to reason that as we get older, the RLS will get worse. that is a commonality.

[shazzywazzywoo]

hey thanks so much for all your comments, what is really great is to have found this site, ive suffered alone for years, nobody really gets this unless they got it too, my family find it quite funny, ive used humour for years as a way of dealing with it and the night terrors, hallucinations ect,so i guess ive created a fun part to it, ... im up for trying alomost anything within reason, have to say the Ropinarole is working so far, was just hopeful to find another ''miracle cure'' which of course i know doesnt exist...i think your right that what works for one does not for work for another ...I think i may give the glucosamine sulphate a try , to me its always worth a try, doesnt seem to be to many side effects of such a supplement and it may help my sheurmans disease and joint hyper mobility syndrome as well....thanks again , much appreciated

[Hidden]

Try it by all means, i also doubt it will do anything for your RLS, i just cant see how it can. Its for joint pain. RLS is neurological, nothing to do with the joints in our bodies...

[Kaarina Administrator in reply to Hidden]

Exactly! It is advertised as helping with joint pain.

GPs used to prescribe this for some patients with Osteo Arthritis but when research showed that this was not such a great help to many, gps are are now reluctant to prescribe it but it can be bought easily over the counter.

[nightdancer in reply to Kaarina]

my mother;'s doctor told to stop taking it, because they were "busted" about making untrue claims, as many products and companies do. It is all documented on the FDA web site, and FTC (federal trade commision that controls advertising in the US) or they TRY to.

[Hidden]

Oh and we do know what might help and we know what definately wont work. just saying.

[nightdancer in reply to Hidden]

after all these years there are some things we DO know, and I always admit if I do not know the answer, and then I go "googling". Knowledge is power.

[Kaarina Administrator in reply to nightdancer]

Oh so I agree with you re knowledge is power. I was put on Alendronic for Osteoporosis, as I have a lower fracture of the spine in my 60's, so a slightly off the beaten med for this RLS forum. I was very much against taking this med, (it is the cheapest one)because of learning so much about it. After 4 weeks of hell (this is taken once a week) I am now off it and have only just about felt "normal" nearly two weeks after stopping taking it. Taken for a long period of time, one side effect of this med is the femur can just break. My mother's femur has broken twice and she has been taking this particular med for years. One should have a break from it after 5 years.

I have learned recently that stomach protectors taken for more than one year prescribed to combat side effects from other meds taken can cause thinning of the bones. It can be a minefield out there with some prescribed and over the counter meds, taken over a long period of time.

[shazzywazzywoo]

Hi again, thanks for comments i found this link re joints and RLS, whilst two different things maybe a connection ??

''Chronic stress is the cause of most injuries. You do not just wake up one day with a sore knee or neck; and you do not “catch” ITB syndrome or pull a hamstring one day while running because you just overdid it on that particular day. You sure don’t all of a sudden develop “bone-on-bone” joint problems or joint degeneration. Chronic stress, whether from overtraining, lack of sleep, ingestion of too much caffeine or refined sugar, or an emotionally unstable job or relationship, leads to hormonal imbalances. The hormone cortisol increases as a result. This decreases tissue insulin sensitivity – a phenomenon termed “insulin resistance.” It is very important because it leads to the decreased absorption of glucose into the body’s cells. When glucose doesn’t enter the cells, not only is energy production impaired, but joints ultimately cannot be repaired due to the inability to make GAGs, as discussed previously.

In insulin resistance, the cells are starving for sugar that is sitting right outside the doorway in the bloodstream waiting to be let in, and often you will crave sweets. You may crave something sugary throughout most of day, and usually right after a workout or a low carbohydrate meal. You may be irritable and moody from the roller coaster blood sugar levels hitting more highs and lows than most Internet stocks of early 2000. Over time, your muscles may start to spasm or cramp up. You may also experience what some physicians describe as “restless leg syndrome” and other sleep problems related to blood sugar dis-regulation. Insomnia and waking up frequently are very common too.

So in order to properly make the glycolytic pathway work so you have glucose available to make glucosamine you obviously have to monitor and deal with your stress levels. High stress = high cortisol = decreased glucose absorption = inability to make glucosamine = an injured athlete. This may mean training more aerobically rather than anaerobically, cutting down caffeine, getting more sleep, adjusting your life or work schedule; you get the idea. Diet plays a huge role here too. More protein, healthy fats (fish, grass fed beef, flax, eggs, avocado, nuts, seeds, coconut, butter, olive oil), and a low grain and sugar diet will help you use fat primarily as a fuel allowing the body to focus on making glucosamine and GAGs. That means the less stress you’re under and the healthier you eat, the healthier your joints will be! I think a Paleo-Type Diet is great to implement here. This GAGs process is not just inhibited by cortisol, but also estrogen as well as certain drugs such as anticoagulants, immune-suppressive agents, and antibiotics. Ladies, that means you’re more susceptible to joint issues than us guys, due to your estrogen levels, and you’ll be even more at risk if you take birth control pills or other hormonal replacement drugs.''

Not sure ...again just looking into anything which can help ...sock-doc.com/2011/10/joint-...

[shazzywazzywoo]

Im always wondering about the connections between diet /food intake and body reactions , so i have started juicing, bought myself a juicer and am on a specific diet plan (not to loose weight but to eliminate certain foods ect) I will keep posted as to any benefits i may note

[nightdancer]

I have done an elimination diet for everything, if you would like any help. have done it for RLS, insomina, migraines, and I have notebooks full of notes hat go back to 1997. Again we can only speak to what we know, and I agree with Eliise. Afetr doing this for so long, lots of us long time RLs sufferes do know a ting or two of wht should work and what does not work MOST of the time. Just because something is natural does not mean it is afe for everyone. Check it against the other meds you take, to make SURe of no interactions. There are certain warnings that go with it and should not be ignored. I deal with the FDA a lot, so please at least listen t what we are saying here. I am quite sure I have not been sitting at ths computer for 15 years, and I am sure I ahve elarned a lot about RLS, have written articles and will be helping to launch a new web site that has "patient" experts on it that people can ask questions of and read their blogs. As always, there is no one answer for any of us, but we do know some things that we have learned over deacdes.

[shazzywazzywoo in reply to nightdancer]

thanks again, it is so helpful to hear from people who know a bit more and can offer advise, i will most definately take care with that advise and think this through more...you just get a bit desperate dealing with this ...as i know you will know thanks

[nightdancer]

As far as "supplements being safe because they are all natural" I have to speak up here. Try what yo nat but here is some info. even herbals and supplemnets can interfere with other meds tyou are taking. Glucosamine, specifically , will block any blood thinner you are taking or anti cogulant. Warfarin beiing the worst to mis with glucosamine. Before taking glucosamine, your doctor must know if yu areev a diabetic have had a stroke or heart disease, kidney disease, blood disease, bleeding disorders, or if you ae pregnant or trying to get pregnant. Bowel disease, ulcers and diverticulitis are`also mentioned ( I have diverticulitus, and it is painful, to say the least) Warfarin is an anticoagulant and helps prevent blood clots in arteries hesrt and lungs, so if you are taking this med, you REALLY have to check with your doctor about other drug interactions, too. drugs.com webmd.com health.com ans so on. I am not being negative, but putting information out there. all natural is not "all safe". Any web site that claims any supplements have "no side effects or interactions with anything" are misconceiving the public, and purposely not telling the truth to sell their product. That is another fact, and most doctros in the US say, no matter what your condition is, use glucosamine after checking all the danger signs and warnings. I had a stroke under anesthesia 3 yrs ago at the age of 54, so I, for one, would not ever bne able to take Glucosamine. There is a reason doctors say not to use it any more. As always your mileage will vary, everyone is different, has different reactions, and in the end we all ahve to do what we have to do to get sleep. But, they even say now, that Glucosamine is not dong the good they thought it would do way back when, and it is not the "miracle supplement" for joibts anbd arthritis treatment any more. My post is a compilation of infornmation of all the web sites I listed, and they are` all very trustworthy. Depends on wher you read about some things on what "spin" you vget, but I do trust the American Heart Association. been dealing with them a long time, spet all last year in and out of hospitals with my 85 yr old mother who had triple bypass surgery. One of the first med conversations was "You are not taking Glucosamine any more, are you?" asked the heart doc to my Mom, and she said no, because her GP told her to stop taking it years ago. so, that is MY experience. this was at Dartmouth Teaching Hospital in the US, and they are one of the best on the east coast. so, the heart doctor confirmed what I already knew. Can't take glucosamine with blood thinners, and he says it might as well get burned in the pile of leaves in our yard, that is wht he thinks of it. Like I said MY experience, and backed up all over. agin, I hate to sound argumentative, but we have to give out accurate information in this groups as well as all others. I am done. It is time for football!!

[shazzywazzywoo in reply to nightdancer]

thanks ...helpful, i live in edinburgh scotland so havent accessed the american information you have, which is helpful thanks

[Juliebo]

Just to add a comment about hype over supplements.

Have you ever noticed how those supplements go in stages on what works and then in a year or two they tell you to STOP them after more trials turn up either debunking the benefits or find they are harmful?

Vit. E, Selenium, Glucosamine, antioxidents, DHEA, Chromium, etc. They all claimed to fame for awhile. We need to be very careful taking any supplement. Each Brand can be different in what they say is in them too. Research, research, research is essential. Just be wary...

Just my humble opinion.. JMHO

[nightdancer in reply to Juliebo]

yup, if we do not help ourselves and stay informed about all aspects fo our health, things will get missed. That is only natural, but whenever you have a complicated medical background, you ahve to read everythihg you can get your hands on, and not exoect or hope your doctor will know it all, because they just can't. They are human, too, (most of them, I think!) All of mine are great, so I cannot complain at all about doctors that I have. If one wnats to get detailed info about supplements and valid warnings, go to fda.gov and ftc.gov (Federal Drug administration) and (Federal Trade Commission) Look for the warning letters secton. As always all side effects do not happen to everyone, but a fact that can not be diputed is that glucosamine does not mix with blood thinners of any kind. It blocks them. As far as the insulin resistance that is true also. We crave sugary things and carbs when we are sleep deprived. I used to "sleep eat" and wake up in horror when I had sen what I had eaten during the night. There was always some evidence of it. so, we have no junk in the house, because of Mom's heart diet, and I have lost 40 lbs since last year. Sugar and caffeine will disturb your sleep no matter what, so diet does come into it at certain levels. We all have our weaknesses and things we have to avoid. so, Shazzy good on you for looking that up! have you looked on the rlshelp.org web site and seen the list of "Foods and Drugs to Avoid" on the treatment page. goes right along with what you were saying. back to football!

[shazzywazzywoo in reply to nightdancer]

thanks, I will have a look at the rlshelp site, and yes , I used to take a 'packed lunch' to bed with me because of my cravings lol a wee picnic in bed lol...i dont drink tea coffee or anything with caffeine and have a good diet now and as i said juicing...im just so keen to find out if i can come off the ropinarole, i worry about long term side effects ? thanks again all

[nightdancer in reply to Juliebo]

yes, the "hot supplements" are pushed and pushed on us, and then the next year there is somehting else that is "better", and so on and so on. after the longer studies are done, whether on supplements or prescription drugs, more detals come out. The avg med trail done by drug companies is 8 weeks. 8 weeks does not give you long term side effects, etc. I always pay attention to the bigger, independent studies, not the ones with 10 people for a few wks. JMHO, too Like you said research, research, and do know that there are bad web sites out there that will tell us what we want to hear, etc. and will not have true information on them. always look tosee who sponsors the web sites you are reading. It will open your eyes. Totally agree with you, Juliebo. have a good one!

[nightdancer]

My doctor and I stopped my premari soon after I had my stroke, Romany. You may need to consider that yourself. I had my hysterectomy at 29, so took hoemones for about 4 yrs, but between heart issues, stroke issues and lots of breast cancer in my family, we decided it best to just stop it. I was going to stop it anyway, but she concurred.

[Drwass2]

If you want to get off most medication, try compression stockings. Works for many people.

;;Try it.