patch

[connie50]

hi does anyone no why one night the patch works for you then probably the following night it doesn't do a thing.on the 31st august 2015 I put my neupro patches on 3mg at 7.00 at night my legs would not keep still,all night long I was up down, up down, I literary tried everything to stop my legs from jumping all over the place, eventually I finished up taking a 50mg repinarol this didn't stop it either(usually does) eventually I went to bed at 1.30am in morning but had to get up, I was so tired, then I went to bed about 5.30am must have fell asleep, woke at 7.30am in morning, then rang my GP for an appointment,(new GP hadn't got a clue my GP was on his hols) but the following day when I changed my patch(change them at the same time everyday)my legs were fine all day, had a good nights sleep, but had a massive headache when I woke(I no this was the repinarol)if anyone can give me an explanation I would be most grateful

[nightdancer]

Connie, it is as we always say, RLS has a mind of it's own. There is NO med in the universe that works 24/7 for RLS. We can do all the same things, all the time, every day, and f RLS is going to break through, it will. It is just that there is NOTHING that works 100% of the time, no med, no treatment, etc. We have to expect to have bad nights and days and accept that is a fact of RLS. I can take all my same meds, do everything right every day, and RLS will still rear up once in a while, and that is the same for anyone here. There is just no one thing tat works for everyone and no one thing that works 100% of the time at all. It is the nature of the "beast". This is the only explanation there is, and there is no other way except to accept that we ARE going to have an occasional bad night no mater how well our meds work most of the time. This is a common thread on here and in every RLS group. unless we get some REAL studies done, and I see no good ones coming soon, this is the best we can do, and be happy with the good nights. ((hugs))

[Hidden in reply to nightdancer]

That is one of the more depressing posts I've read!

Yeah that always bugs me too, or I change meds and it settles down - is it the meds or the RLS just getting less severe, (right before it comes back with a vengeance)?

[connie50 in reply to Hidden]

hi raffs thanks for your reply, but I have come to the conclusion that what ever I do I will always suffer with RLS & I just have to accept it, no matter what medication I take (& believe me I have literary tried them all)

[Hidden in reply to connie50]

Yeah - I figured as much myself, unfortunately!

[connie50 in reply to nightdancer]

thanks nightdancer yes I have found that out, NOTHING you do whether you do the same everyday WORKS for you. You have to take it one day at a time. I have been keeping a dairy to show my GP(the one I usually see) but up till now my legs have been fine, I did have a drink on Monday, now whether that has something to do with it I don't no, but my legs were all over the place never ever experienced anything like it, no matter what I did it would not go away, but like I've said they have settled down know.

[gretakmac in reply to connie50]

I have kept a diary tracking everything I do, what I eat, the weather, and can not find a common thread for the bad nights. Haven't ruled out stress as a trigger, but even that is not consistent. Have to agree, nothing works all the time, we have to accept when something works much of the time.

[connie50 in reply to gretakmac]

we will just have to accept that there isn't a cure for this dreaded nightmare (& that is what it is)so no matter what we do, by taking meds etc., I personally, don't think there's a cure so we just have to put up with it no matter how much we moan.

[Hidden in reply to connie50]

Right Connie, there is NO CURE, so we take the meds if we can and hope for the best.

[connie50 in reply to Hidden]

yes I no Elisse I have tried everything going even in the same order thinking I might have done something different & I have come to the conclusion you have to put up with it,

[Patsy11011 in reply to gretakmac]

Stress can bring it on big time! 😠😠

[Hidden in reply to connie50]

Connie, having the drink was probably the reason you had a bad night. Alcohol is for most people with RLS a big no no.

[connie50 in reply to Hidden]

yes I no about the alcohol but with it being a bank holiday I thought I would have been ok because the previous Saturday I went out (very rare occasion)&I had a few drinks without any problems but I no now I shall not have another drink (what a life)

[madyorkie]

This may or may not help, but I have been on various meds etc for RLS,but I still end up being up through the night and find that a warm bath helps me to settle for a while. x

[connie50 in reply to madyorkie]

thanks for your reply but up to know since Mon 31st august I have been fine no leg movement its been brilliant (I have no bath) just a walk in shower,sometimes I wish I had never had my bath taken out thanks for your info anyway xxxxxxx

[Patsy11011]

The same happens to me I have had some nights where for no reason I am up all night with the worst bout of RLS I take more meds ( I am on durogesic patches, lyrica tablets & clanazapan) nothing works till I fall dead asleep about 6 am. You have to watch what you eat if you have too much if the following you are in trouble :

Sugar, wine, coffee,MSG (Asian food or flavored crisps)

[connie50]

hi, just got out of bed didn't go to bed till 4.0 this morning my legs where all over the place,I am taking that much medication (3mg patch, trazadone this is supposed to be a sleeping aid but has stopped working)& last night I took a tramadol but this makes me itch all over, so that's another factor why I cant sleep, but yes my legs were really bad last night been like it for a few nights. I think that's why I'm not sleeping, the patch I,m on causes fatigue & I think I may have got that as well, along with the rest. I am just totally fed up with it all.

[Marinita]

Hi everybody!

I have suffered from RLS since I was tiny... I remember how my mother always had to massage my legs so I could sleep. My oldest memory are from the age of 4.

Most of my family suffers from it... My granny did, my mother and my sisters. As I see it in text right now, I see that only the women was/are suffering from it.

My GP says that my attacks are the most severe he has ever seen... I have literally been walking the boardwalk on our beach where I live from about 9PM until 7-8AM... Non-stop.

Unfortunately I live In Spain and the health care isn't very good. I haven't known about Lyrica and Durogesic until tonight... searching for second effects because I take them for other deceases. It's mindblowing that these medications should help me (been on Mirapexin 0,18g for a long time. In other words, this mix should help me more than it does...

I hate these nights and I cannot come to accept to live with this. It's too severe, at it's worst I get suicidal. Even if I know that it will pass in the morning, I cannot face another moment of this terror.

Tonight I am going to try to put an extra parch on and take an extra Lyrica... Thank you all for this discussion! It is priceless, and I will follow you all.

I wish us all nights of wonderful sleep and a

MARRY CHRISTMAS!

Ps. I have noticed that I can't eat chocolate after 5PM...

[connie50 in reply to Marinita]

hi marinita I know it runs in families my mother had it & my sister has it really really bad 24/7 for the last wk. or so I have had it really bad, it always seems to be in my right leg its like a muscle cramp, all my muscles in my legs seem to tighten up,especially when its time for bed, I have just weaned of D/A so know taking tramadol for the pain but as stopped working the tramadol that is.I only take 150mg a day so I don't know whether I'm agmentating or not. I am from England I thought by the way you where talking you came from Spain & by your name as well. I have felt suicidal all wk. because its that bad, I just don't know were to put my legs some days. O how I wish I could go to bed & sleep but its a loosing battle. Take care XXXXXXXXXXXXXXXXXXXXXX

[Hidden]

Hey Connie,

I’m on the patch as well. For me, it seems to depend on where I put it. I’ve discovered that it works best when near my shoulders or on the back of my neck; if I put it anywhere else it doesn’t do so well.

Merry Christmas to you and yours!