god damn legs

[katierp]

sat here kicking away,trying my hardest to ignore it with no joy,i hate it i hate it i hate it

[Hidden]

Hi Katie, have not heard from you for a while.Sorry you having a bad time.Think if I remember you were going to see a neurologist have you been yet? Hugs kim x

[katierp in reply to Hidden]

hi again,still waitin on an appointment,been havin problems with my other conditions,so havnt been on here for a while,its the warm weather thats driving me crazy at the moment,love the sun til evening wen i start kicking,havin to take diazapan as well to help,any advice on this ?? x x

[worsecaseinamerica in reply to katierp]

Believe it or not, benzos make mine worse. The ONLY thing that help mine is opiates. I've been on 80mgs of methadone for 10 years. Of course I've been treated like a second class citizen the entire time, and I'm stuck

in a city I hate because I'll never find another doc to prescribe it, but other than that no

RLS. Hang in there.

[Hidden in reply to worsecaseinamerica]

Ok what City is that in America ?

[Hidden in reply to worsecaseinamerica]

it's crappy that doctors, nurses and people in general see us as drug seeking junkies. Even with the recent pain agreements that are being signed by doctor and patient in the USA, the nurses and doctors have a crappy attitude towards anyone who needs pain medicine. I don't know if it's the FEDS threat to the doctors or the tightening standards that are making people who use those drugs and other stronger narcotics give them less frequently.. but suddenly patients are without medicines or the doctors are weaning them off rather quickly.. it's a disease that can't be proven so of course its one that won't get the best medicines which are opioids for many people. = /.

[RevS]

I am assuming you are referring to restless legs syndrome. If not, I do apologize. If so, I hear time and time again that quinine (as in tonic water) actually helps folk although I can't say I saw a difference when I tried it. And, I have a brother-in-law that swears by some remedy he found at the pharmacy for his extreme case of restless legs. I will ask him, tomorrow, what that product is and post it. If I am missing the issue, again, I apologize.

[katierp in reply to RevS]

yes please tried everything there is but nothing keeps it at bay for long x x

[Hidden in reply to RevS]

Tonic water doesnt work for RLS. The quinine is what works for cramps. But quinine shouldnt be taken these days because of it being related to serious health issues. Altho the amount in Tonic water wouldnt be enough to worry about. But i say again it doesnt work for RLS.

[nightdancer in reply to Hidden]

Quinine, as Elisse says, is not for RLS. In fact it has a 'black box" warning in the US, 'not to be used for anything BUT malaria". Quinine may help with leg cramps, but it leg cramps are not RLS. RLS is neurological, cramps are muscular. big difference. It has been proven to cause severe heart valve damage. Cannot repeat this enough.

[Gladitsover]

Me too! Since I had my knee replaced it's not stopped. I've recovered from my surgery but now have the RLS and PLM to contend with. Nothing seems to work for me at the moment

[Hidden in reply to Gladitsover]

Hi gladitsover, what have you tried so far?

[SUMMERBOY]

For the past 30 years my RLS symptoms were just about tolerable. The symptom of not being able to keep my legs still for more than a few seconds would begin early evening every day but would subside when I went to bed but since joining this community and reading the reports of the terrible experiences many people have I have found my own RLS symptoms to be increasing in intensity and not stopping when I go to bed. For the first time I had to visit my doctor about it and was prescribed Ropinerole. My symptoms usually start anytime aound 6-7pm so I take 1mg at around 4pm and the symptoms don't show. I think that I would be insane by now if the symptoms had persisted. I just dread the time when possibly the drug stops working for me.

[nessienoo in reply to SUMMERBOY]

Just read your message... i dread the day my drugs stop working too. Occasionally they dont work and it really is total dread.... i have a suggestion for you though. I would pay anything to get rid of my rls. I hate it more than i have ever hated anything.... except needles.. my phobia of needles out weighs anything else. But when i was in town yesterday, i noticed that the chinese doctor does accupuncture for rls... and from personal experience, ive never found anything that they cant cure... whenme or my family have anything that my doctir, or the hospital dont have any luck curing in diagnosing, i go to the chinese doctor... as i said i cant with this one becausenits accupuncture, butnif it wasnt needles, i would be straight there... i am 99.9999% sure they can cure it. Xx

[jimeka in reply to nessienoo]

Hi Nessie, where do you live? I have had acupuncture many times, like you I had a phobia for needles but you don't feel anything and I close my eyes so that I don't see anything. The girl I go to does not know how's to treat Rls so I was wondering where this Chinese guy is. Anything to stop these jibbly jablies. Cheers Jimeka

[Hidden in reply to nessienoo]

Acupuncture never helped me when i tried it. And the girl i went to also suffered with mild RLS so knew what she was doing. She treated herself when hers played up. I wish someone could cure RLS, but there isnt a cure yet. Just my opinion.

[nightdancer in reply to Hidden]

my opinion and experience is the same as Elisse's. Acupuncture never helped me and I gave it a good go. Gets expensive since no insurance will cover it in the US.

[SUMMERBOY in reply to nessienoo]

Thanks for the tip. I shall certainly be giving anything and everything a try should the Ropinerole stop working for me.

[Hidden in reply to SUMMERBOY]

Hi, did you go straight on to the 1mg Ropinerole or have you had to up it to that dose. The advise now is, not to go any higher than 1mg Ropinerole because of augmentation...

[SUMMERBOY in reply to Hidden]

I started on 0.5mg for the first few days then increased by 0.25mg each week to get to 1mg. The doctor had told me to keep titrating the dose up to 4mg but as I found 1mg to be sufficient I keep it at 1mg.

[Hidden in reply to SUMMERBOY]

Hi summerboy, glad you getting relief ! You are doing right keeping the dose low its when you get on the higher doses that thete is more chance of augmentation. I think the new guidelines are not to go over 2mg of ropinerole a dayso keep as low as you can for as long ad you can to avoid augmentation. Good luck

[nightdancer in reply to Hidden]

HI,, there. yes, you are right they have lowered the max dose for ropinerole from 4 mgs to actually 1 mg. The experts now say that if the low dose of ropinerole or any dopamine med does not work, it is not the right med for you. Augmentation is such a common problem now that Ropinerole has been used for several years for RLS. Augmentation can be very severe after years of use, so that is why it would not show up in a 12 week study, the normal amount of time to clinically test a drug. The "extra" side effects are coming more and more to light now.

[Rubylane25]

What type of meds do you take? I can certainly relate, it is a horrible syndrome that is so misunderstood by the public at large, including doctors!

[maddymac]

I find the Neupro patches Rotigotine have helped me slightly with RLS but I still have two or three nights a week when I walk the floor all night .I don't know where to go from here I just feel so desperate at these times and wonder why no one has found a cure for this debilitating condition when so many people are suffering from RLS

What do other people do to alleviate the discomfort in the middle of the night?

[Hidden in reply to maddymac]

Hi maddy, my legs ok now but still find myself unable to sleep soo annoying! I used to have a hot bath and do my ironing. Half 3 in morning here legs good but cant sleep x

[Hidden]

God dam legs yea I get it in my case it's god dam body I hate it too but you could be worse in a wheel chair.blind So try to be happy laugh tell jokes Iv had RLS for 8 years it took me 2 years to except now I just want to be happy as I can :)))

[Hidden]

God dam legs yea I get it in my case it's god dam body I hate it too but you could be worse in a wheel chair.blind So try to be happy laugh tell jokes Iv had RLS for 8 years it took me 2 years to except now I just want to be happy as I can :)))

[soup2]

Ditto.

[soup2]

Ditto. I hate it also. It's the absolute worst.

[nightdancer]

Sadly there is no med or treatment that works all the time for anyone. The only thing that stops my RLS most of the time, for ME, are the opiates and I have been taking them for over a decade with a sleep med and clonazepam. Sometimes a "cocktail" is needed, not just one med.

[nightdancer in reply to nightdancer]

trial and errror is how we find what works for us or does not work for us.

[suemont]

I've had RLS for years and years but it has got worse recently. The other night I discovered that if I held the muscle in one of my legs really tightly (tight enough to hurt my hands!) it helped, so I wondered about those compression flight socks that you wear on long plane journeys. Last night I wore them and it worked! Trouble is they only come to my knee and I often get the heebies in my thigh so I bought some support stockings today at the chemist and will try them tonight.

[Hidden]

Hi suemont, glad flight socks helped let us know how support stockings fare.What we have to do! I have tried hospital support stockings with varying results.Very glam lol !

[suemont]

I will, p1pp1ns. As you say - the things we have to do!!!

[Hidden in reply to suemont]

Have you tried any medication?

[suemont]

Yes, I was on diazapam for anxiety and that helped both anxiety and RLS. But that stopped working after about a year and I'm reluctant to increase dosage. Now I'm on clonazepam but that makes me feel drunk in the morning and did nothing for the RLS. Last night I put on the flight socks again as well as one of those elastic knee supports and it really helped - until the elastic at the top of the socks started cutting into my skin! (there's always something, isn't there?). So I took them off, scared I might cut off circulation in my legs and lo! RLS came barrelling back. *sigh* I'm going to try the support stockings tonight LOL - what a sight.

[Hidden in reply to suemont]

Hi Sue, dont worry about cutting off the circulation as according to Dr B a rls expert this would not happen from tight socks ets.If you listen to his talk on youtube just type in DR Buchferer he mentions this x

[Hidden in reply to suemont]

Hi any luck with the support stockings? X

[Rubylane25]

What do you take or are you not taking anything at this point. I went three months with no meds and almost went crazy