Help

[Unhappygirl]

After being vertually symtom free for the last 4 months on additional medication of codiene 30 mg at night l decided to bite the bullet and go on a 2 week holiday to Spain, what an idiot l am. For the last 3 nights l am getting continual jerking again, l am so unhappy and suicidal again. I am sitting here writing this in the dark so as not to wake my husband, l know no one can really help me but l just needed to ramble on to someone, anyone who would listen to me, it helps to just write this down, l am so unhappy again, thought l was better but alas no. Thanks for listening

[Leelee49]

Hi, do you know what could have set it off again? How did you manage to be symptom free? Hang in there, you will be ok, and will get sorted. Take care.

[Unhappygirl in reply to Leelee49]

I was virtually symtom free, just odd nights with my RLS

Thank you for your reply

[Jphickory]

Hang in there.. it will get better again.

[LoisTonya]

Hi Unhappygirl,

A change in routine makes my condition worse but, after returning home, it settles back to where I was before. That’s not much comfort when you had hoped for a good holiday. I’ve got two holidays booked with my family - August in Ireland and Christmas in Montserrat. I’ll report back how my rls reacted

[Joolsg]

So sorry to hear that. You say you have been taking "additional medicine of 30mg codeine at night". What other meds are you taking? Did you continue taking the codeine on holiday? Are you in Spain now?

This is a really horrible condition and even worse when you can't switch the light on, pace around, do stretch exercises and make a cuppa.

I really hope it settles down. It could be a change in diet/alcohol/caffeine/stress that has triggered this if you haven't changed any meds. Are you taking dopamine agonists?

Take care,

Jools

[Unhappygirl in reply to Joolsg]

I take gabapentin 300mg, 4 daily, a Neupro patch (rotigotine ) at night and 4 months ago my gp put me on codiene 30 mg at bedtime

[Joolsg in reply to Unhappygirl]

Why did your GP put you on codeine 4 months ago? Had the Neupro patch stopped working? I only ask because as soon as you mentioned leg jerking, alarm bells rang and I thought you were possibly suffering Augmentation.

Please have a look at all the posts on Augmentation and see if it sounds familiar.

The codeine can help reduce the symptoms but can’t hold it back forever.

Wait till you’re back home and seriously consider getting off the Neupro patch. As codeine masked the jerky legs for a while, once you are off dopamine agonists you’ll respond well to opioids like tramadol or OxyContin.

Jools

[Unhappygirl in reply to Joolsg]

Thank you fod this very useful information, in actual fact the patches only help for a few week. My GP just put me on codiene and never asked about the patches but said l had been on gabapentin a long time and l took it to mean it would be hard to discontinue it

I dont like the patches as they seem to be of little help

[Unhappygirl in reply to Joolsg]

Yes l am still in Spain a further 10 days to go, cant wait to get home, my legs driving me mad

[Unhappygirl in reply to Joolsg]

Thank you, l really dont feel the patch any rewards for mr, so l started to cut my patch in half nightly, but now the jerking has started in the mornings too. Do u think there is any connection to me reducing my patch or further indications of augmentation

Im so miserable and at my wits end

[Joolsg in reply to Unhappygirl]

As soon as you start to reduce any dopamine agonist you will suffer the withdrawal symptoms you are experiencing.

You are in withdrawal and the constant leg jerking is what happens - as well as little or no sleep.

If still on holiday maybe keep putting the whole patch on and wait until you’re home to start reducing it. Do it slowly by cutting it in half every other night but you must get an opioid like tramadol from your GP to help.

Take time off work as withdrawal is horrible ( you know that as you’re going through it slightly now).

Read all posts by Nick-the-turk and bganim and Katerina and you’ll see they went through withdrawal and are all doing a lot better now.

[Unhappygirl in reply to Joolsg]

I am home now and the jerking in my legs has calmed down, lm so happy to say. I have an appt with my GP next week but now things have calmed down, l feel a fraud taking up his time

[Joolsg in reply to Unhappygirl]

Brilliant that the leg jerking has calmed down. Did you go back onto the complete patch or carry on with the half patch?

Still see the GP just in case. He needs to know how badly you suffered while away.

[Unhappygirl in reply to Joolsg]

Thank you

Yes l went back to the full patch

Will see what doc says next week, thanks again

[Unhappygirl in reply to Unhappygirl]

I have a question, my iron levels are low, lve had them checked twice, l asked my doctor what they were and he said 9, now while l was working on a ward at a hospital l had to bring to the attention for patients under 12 to the doctor for him to prescribe iron. My question is that on the forum it says 100/200 but does that mean as l am in the UK iron levels differ

I really hope this all make sense, lm not very good at writing it down

[Unhappygirl in reply to Unhappygirl]

I'm sorry l asked this question where I did but I can't seem to work out where and how I ask a question,sorry lm not very clever with this type of technology

[Hidden]

Hi. Please ramble away! We are here to listen!

So sorry to hear of your present predicament. It is SO utterly discouraging to be symptom-free for awhile, only to have RLS hit again out of nowhere.

A few things to think about to help you think where this might’ve come from:

-different environment

-different bed

-different diet

-stresses — of being in a new place, of being in a place where there are lots and lots of new things to do (leading to feeling countless emotions), language barrier, etc.

-*time zone change and adjusting to new timing for medicine, food, etc.

*I got back from vacation about a week ago. I was fine on vacation, but started having trouble again a few nights after I got back. I had no clue why this until I starting thinking about the jetlag I was still under. My body was still adjusting to the time zone difference in regards to timing of medicines, etc.

I really hope things get better for you!

Please try and enjoy your holiday!

Take care!

[Unhappygirl in reply to Hidden]

I am going to begin weaning off the neupro patch. Tonight for the first time l drop from 2mg to lmg. My question is how long do l stay on lmg, do l then go alternative nights, please l would be grateful for help on how long it takes.

I am nervous and frightened at what is in store for me

[Hidden in reply to Unhappygirl]

I really can't answer to the medical, but I can try and help with the being scared part.

It's such an awful feeling, isn't it? I know that it is much easier said than done (especially with this Hellish syndrome), but try and relax before bed tonight. I do crosswords as a way of calming down. I also like to watch mystery shows.

Here are two things on Youtube that you could try:

-Rife Frequencies specific to RLS. The science behind these is that different physical conditions respond to different musical frequencies, which is why you need the frequencies for RLS. Type "Rife Frequencies RLS" into Youtube and you will get a couple 10-minute sessions. I actually have had some success with these (my legs like these), so I have transferred these to my mp3 player, put it on repeat, and have "enjoyed" with earbuds all night long.

-Wholetones Healing Frequencies. There is a story behind these that can be found on wholetones.com. The guy wants you to buy his music, but I found free samples on Youtube. These really help calm my nerves!

I hope this helps! Good luck tonight!

[Unhappygirl in reply to Hidden]

Thank you once more for your advise, l will look into all your suggestions, Its so kind of you to try help me

[Hidden in reply to Unhappygirl]

You're very welcome!

Any time! This is a beast of a syndrome.

[Hidden]

As you are on holiday in Spain, are you eating or drinking anything different to what you would at home. ? It sounds like something might have triggered your RLS. Stay strong, it might just be a blib. Sometimes for no reason at all RLS will override our meds and show its self, then after a few days, it can subside again. I hope this is the case for you.

[Unhappygirl in reply to Hidden]

Thank you all for your kind comments, they really do help and make u feel u are not alone

[Unhappygirl]

Thank you all for your kind comments, they make me feel like lm not alone in my hours of need, bless u all and thank you again

[Smiffyliz in reply to Unhappygirl]

So sorry to hear this. I am always better when I am away but like you my symptoms were a lot better and now back big time. Scared to go to bed

[Hamish58]

Hi, I’m wife of Hamish58 who’s a sufferer and has found this site so helpful.

He always finds the time zones on holiday which change your medication times messes things up. Also all the usual triggers; he doesn’t drink alcohol or caffeine, take antihistamines or nose puffers for allergies, sugar is a big no no and too much salt or wheat. The accumulative effect of a combination of the triggers in one day does make it play up for a day or two. Think back over your day and I’m sure you’ll find the trigger. It’s so depressing I know as I’ve watched him many a time going down a spiral but it does usual calm down again once the triggers are gone. Just make sure you try to keep things as similar to your routine at home. Thinking of you😊

[Unhappygirl in reply to Hamish58]

Thank you for your thoughtful comments, l dont drink nor have coffee but mayb too much salt and yes my routine differs from home, thank u again

[Graham3196 in reply to Unhappygirl]

Hi

If you still have about 8 days to go I suggest you take a punt and cut your food right back to basics. Drink water, eat rice and meat without sauces eggs done anyway and no caffeine, no lactose, no gluten and no alcohol. It might sound horrible but you seem to be having a badly memorable holiday anyway.

Take this as an opportunity The food mentioned above has a very low probability of including one of your triggers so just perhaps you can enjoy the last few days and nights. If you feel hungry buy some ham or a dozen hard boiled eggs. I can eat rice cakes with peanut as well which are easy to prepare. I can also eat a banana per day which I look forward to immensely.

Nothing to lose except 8 days of paella ! Maybe you will win the last couple of days of your holiday back. Good Luck

Graham

[Graham3196 in reply to Unhappygirl]

Just as an amusing aside. I was out and about today and I only had one food shop to choose from at about 2pm and I was hungry. The ONLY food for me was boiled rice. So I bought a plate and added some salt. It was better than starving or stirring up my RLS. The mongrels charged me $5 for a plate of boiled rice. On the other hand they sold me a flat white decaf and lactose free milk, Why do I have to pretend to have a cup of coffee?? Incidentally I can't drink soy milk without a RLS reaction but almond "milk" is ok, it just tastes awful. in my humble opinion.

[Redhots7]

You probably just have a temporary relapse. Please just get back to your normal at home routine and BREATHE DEEP. Try some stretching and warm soaking bath before bed. You may have

Gotten your routine out of sync

(Med taking times). I take a liquid

called “ STOPS LEG & FOOT CRAMPS IN ABOUT ONE MINUTE “.

I know it says “ cramps” but I have

RLS and it absolutely works for me.

I buy at Health Food store ($6.95

a bottle). Ingredients: Certified

Organic Apple Cider Vinegar,

all natural ginger & garlic juice.

You take 1 capful in 2 ounces

of water or fruit juice. I keep in kitchen and after drinking, by time I walk back to bedroom, already

Working . You can also order

Online. Just google and can order and have delivered to you.

It ABSOLUTELY TASTE HORRIBLE,

But as you know, when you are

Struggling with pain, If it works, you can handle a moment of juck,

Lol. Don’t give up, the trip got you

out of your norm, but you went,

Had a good time but you are now

paying for it, sometimes that is

okay, life is to be lived. Those of us that live with Chronic Pain just have to allow for down times after

an “adventure “. Hang in there,

The other thing that helps me is a Pure Wave Massenger on feet and legs. If you haven’t tried a Tens Unit, will also give you relief.

Salonpas Pain Patches (OTC) placed on especially sensative

Or sore areas are extremely helpful to reduce the pain . I also

Use a product called “ TWO OLD GOATS” Essential Oil Lotion. This

you can rub on your legs. I find

I have to try different things at difficult times to find what will worked. Hope it settles down for you again soon !!!! DON’T GIVE UP.

Keep posting and let this forum

help you ! I am sure others will have some good suggestions for you too . If you haven’t already,

schedule a doc appt to discuss

what may have triggered the new Med to stop working and perhaps

Will have thoughts or suggestions

That will bring your depression down and return you to a quality

Of life you can live with 😘😘😘

Keep me posted on your progress.

[Unhappygirl in reply to Redhots7]

Thank you for all the information, some l can try out here and l will try when l get home. I am so happy that l found this group, everyone has been so kind especially when l need a shoulder to cry on in the small hours of the morning

[nick-the-turk]

Hi Unhappygirl my first time last year on holiday after getting my RLS under control and had a similar reaction with my RLS and after a bit of head scratching as to why found that a cold leg shower and wrapping legs in a damp cold towel helped big time [ so put it down to the heat ]. Used to get some strange looks form other holiday makers when i was sat out on sunbeds at 4 in the morning [ some just coming back from nights out lol ],When explained to some, some did understand but not all but would swap legs with them if they would.Try to see if its the heat nothing to lose take care

[gyppylegs]

Hi Unhappygirl

I do sympathise with you but can't offer any solutions.

I' m on gaba and codeine for RLS and mild fibromyalgia. When I went to Spain last Sept my legs went mad too. My symptoms are usually more controllable that time of year. I know my RLS is temperature related because they are worst during mid winter and mid summer months when the temps are extreme and my meds won't always help. I also need to make sure that my feet are not cold. I will never go to bed with cold feet and will take a bath as I won't get any sleep if I go to bed with cold feet as my legs will be jerking around all night.

Best wishes to you and I hope you manage to find a solution soon.