I have only been on the rotigotine patch for two weeks and two days and every day, my legs are getting worse. Last night I got no sleep at all and they're still going. I can only imagine that it is that... Any comments please? I augmented on pramipexole and I knew it was a risk but I was desperate as nothing was helping- not oxycodone, fentanyl patches! I can't get methadone prescribed as I need a specialist. What do I do? Help please.
Meanwhile, I've reduced my gabapentin to what Dr B suggested was a dose that was absorbed, i.e. now 800 mg. Was 2, 800 mg.
Tramadol down to 1 x 50 mg slow release and some 50's instant release if required.
It's Friday and I'm scared of having to live the whole weekend like this.
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restlessstoz
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Thanks Manerva. Yes it's 5.45 pm here. Why do weekends loom so large and empty!!! Jiggling for all I'm worth and going into a boiling bath to shock my legs... hopefully.
Don’t give up too quickly on the patch. It is probably your body adjusting to all the recent changes. There are some things you can try to help yourself through this.
What time are you applying the patch? For most people it works best if applied by 5pm. Set an alarm on your phone and be very strict about doing it on time! For me even 15 mins late sets off my legs. Carry a spare with you, wherever you go!!
Where are you applying your patch? Sometimes it works best on the upper body as opposed to the lower body. For me only my back and shoulders work well. It’s strange, I don’t know why, but if I put it anywhere else it doesn’t work as well. Make sure you have pressed firmly round the edges and put pressure on the patch for a few minutes after applying.
Try distracting methods the minute you start with any symptoms. Don’t wait until it’s full blown. Always check that your patch is in place first!
Late afternoon/early evening don’t sit for longer than 30 mins even if your legs are quiet, move around and do some gentle stretching. If you are working at a desk walk to the water cooler, or flex your back and shoulders for a few seconds. If you are watching TV get up in every break or stand behind the sofa and stretch as you watch.
Knitting is a fantastic distraction. Gentle walking, weeding the garden, baking, cooking, climbing up and down the stairs...do anything except sit and let it get a hold on you.
(All vigorous exercise like swimming, running, power walking, heavy gardening or whatever yours is, should be done by lunch time if possible)
Go to bed and get up at the same time regardless of how bad the night was! Stay away from using your phone/iPad etc 1 hours prior to bed.
Get into a warm Epsom salt bath for 20 mins before bed. Then massage your legs and body with almond oil. ( you can add a few drops of lavender or cypress essential oil etc)
Find some music and light earphones & get into a cold bed..don’t use hot Blanket! Distract your brain with music for at least an hour. If your legs start tingling don’t lie there until they get worse. Try gentle stretches in bed. If it doesn’t ease off get up and stretch and put your music on again or do another massage.
I do hope your RLS settles down but if not, seek help from your doctor again.
What a lot of wonderful information and ideas. I'll be sure to incorporate them. Currently I'm not sitting down at all or if I do it's five minutes then up again! I don't know fi I'll even get to bed but will try when my legs are quiet. Thank you so much.
I think i am sorry to say, you are augmenting on the patch.. It was a risk like you said after augmenting on the pramipexole. But some of it could be withdrawals from the pain meds. Did the Tramadol work for you at all.? Is that why you are reducing it,. ?
My neurologist said it can cause augmentation so wanted me to reduce it. I was on 250 mg SR, a day, now 50 mg SR and 50 mg ordinary. My pain is manageable with Panadol osteo and the dose of tramadol.
Dr B. suggested that the gabapentin I'm on was not useful above 600mg and I was on 2,800! I've reduced that now to 800. I've dropped baclofen as Dr B. said it wasn't used for RL at all??? I don't know why I was on such a cocktail!
In myself I feel a lot better than previously
When I first started the patch 16 days ago, I had no legs at all. Then slowly it's started with some symptoms of restless arms as well which I've never had before; increasing until the last 24 hours when I've had legs off and on all the time and no sleep at all.,
I know I've made a lot of changes lately - with my doctors supervision and approval of course, so it's going to be hard to know what's what but to me the fact that I've had legs in the daytime is indicative of augmentation. I don't know though if I can drop the patch as I don't believe I will be dependant on it yet after only 16 days?????
Hello. I’m sorry you’re having such a tough time. I know it’s scary hon, but you can do this. You will get through this. I can only imagine what you’re thinking, but I can tell you that, whatever it is, I’ve had similar thoughts. I’ve had countless scary days, weeks, months wasted on this syndrome. I got scared stiff every time....but I also got through it every time too. I hope this helps. Hang in there! Do something you enjoy this weekend!
I have a bonsai demo to attend on Sunday and our club meeting tomorrow! A great way to distract and no one will noticed if I'm standing up all the time... though if I'm jiggling like I am now they'll probably lock me up!!!!
Thanks for your words of encouragement. It does help.
Several years ago and I still remember what my college roommate sent me when I was going through a tough time. I’ll see if I can recreate it because it cheered me up!:
You are changing alot, maybe one med at a time would have been better. I would wean off the patch, if you are augmenting from it then weaning would be the way to go i should think. Yes Tramadol can cause augmentation but its not usual for that to happen. But from what you are saying about the patch and your symptoms have slowly returned with it being in the arms , It doesnt sound like the Tramadol is causing you any problems. Did you tell Dr. B about going on the patch after augmenting on pramipexole, and that your doctor has told you to reduce the Tramadol ? And that you seem to be augmenting on the patch. ? If you havent, i would email him again, with that info and see what he has to say. Please keep in touch on how you are going.
Thank you! I think I was so desperate to stop the hell I was in that I just wanted to be done with all these drugs. I'm not sorry, though it has complicated the picture. Good idea about emailing Dr B. I will do that now.
Of course you were/ are desperate, and when we get like that we will take anything, do anything to get that relief so we can sleep, so that is understandable. I hope Dr. B will be able to suggest on how you go from now on.
The fact it’s moved to your arms is a sign of Augmentation. It can happen very quickly if you had previously augmented on pramipexole.
The RLS chair has just posted about Augmentation again so have another read.
I was offered the rotigotine patch by an ‘expert’ in RLS at King’s College Hospital after I had suffered terrible Augmentation and withdrawal from Ropinirole. I had, by that time, read Dr Buchfuhrer’s book several times and all the research articles I could find about dopamine agonists.
I refused to touch another dopamine agonist after the hell I had been through on Ropinirole.
I hate to say it, but I think you are in Augmentation again.
How long did it take you to get off pramipexole and go through withdrawal? I suspect you are on too many drugs as well. Gabapentin is usually taken alone or with a small dose of opioid. You are taking dopamine agonists, alpha2delta ligands and an opioid.
I think you will have to get off the patch ( using the tramadol to help the severe withdrawal) and then adjust meds to find a combination that works. Pregabalin is better absorbed than Gabapentin with fewer side effects so that could be a possibility.
Nightdancer has just posted about Dr Buchfuhrer’s book and I recommend you get hold of a copy, read it and then share with your doctors.
Thanks Joolsg, yes I read the post on augmentation. It took about two months to get of the pramipexole completely. I'm hoping that because I've only been on the rotigotine for 17 days that it wouldn't take so long??? I had a good sleep last night using oxycodone that I had left. I took the dose that Dr B. suggested and it seemed to turn off the legs. My next issue will be going to the GP this morning to get a new prescription as I don't have enough left for tomorrow.
I agree- hopefully it will not take as long to get off the patch and the oxycodone should really help. If it has worked on the RLS, then maybe you should switch to oxycontin ( extended release form of oxycodone). It works well for RLS.
Wishing you restful nights & a painless withdrawal from the patch.
Thank you so much Joolsg. You know, it's such a comfort knowing that there are all these people on the forum who not only understand the hell that RL is, but have a wealth of knowledge about it too. Thank you for sharing that experience nad knowledge... everyone.
Sorry, I didn't mean to give the impression that my doctor knew who to send me to. I don't know if he does or not. He was simply saying that a specialist needs to prescribe methadone. I get the feeling he was doubtful that one would prescribe it??? Anyway, will follow up again with him next week.
I’m not sure what your doses of primapexole were but I attempted to wean myself from primapexole 6 weeks ago going very slowly but experienced all the symptoms you are describing. Because the patch is a lower dose but constant for 24hrs this might be what’s happening. I did make it to 0.125mg but couldn’t lower anymore than that. Couldn’t tolerate all the adjunct meds that most take to do this. Anyway my doctor also put me on Neupro patch 1mg 1 week ago. I am still adjusting but the RLS symptoms are not as extreme as before. I also have just started the AIP diet, am on day 5. Feel like crap with lethargy and headaches at present but managed to sleep 5 straight hours last night. Hoping the feeling like crap is my body riding of toxins and hope in the end I might heal my gut and figure maybe foods that are triggering.......we will see.
Thanks Manerva. When in the midst of an attack, the world changes and time seems to extend! I realised at the time that I was panicking but it's not easy to stay calm under attack. I'm hoping my meditation will help- once I'm more proficient.
Yes, it is hard, very hard, to ‘stay on top’ mentally while in the midst of a relentless attack and while in the middle of the night and being very tired and in need of sleep. It is at those times that you ‘simply’ have to hang in there. At other parts of the days, when symptoms and tiredness may have somewhat taken a retrieve, you may need to try to review you situation and progress critically to see whether there is chang and - hopefully - improvement. I hope there is!
Thanks LotteM. Yes I think there is improvement. I'm giving the patch away though as it isn't helping and only giving me restless arms and daytime symptoms. Just relying on a bit of tramadol, Targin and the gabapentin. At least until I get to the doctor this week. Having another ferritin test to see how it's progressing. Meanwhile, standing up jiggling my way through another night!!!!
Wow. That must be tough. Well done. You sound pretty resolved. I hope you don’t get yourself talked into resuming the patch after these days without. After these first few days it will probably only get better. But you’ve been there & done that, as the Ozzies say!!!
No, no more patch. Having RL is bad enough but to have R arms as well!!! No way. And all day as well. I don't know what the answer will be but for now I'm just taking one day and night at a time and see where to next. Thanks for the encouragement.
If I were you I'd fire your doctor(s). RLS isn't a result of a drug deficiency. Get a doctor who will check your iron levels, your folate, even your selenium levels. Then have your gut checked for dysbiosis as infections can trigger RLS.
Also check your diet. High sugar, carb diets can definitely increase inflammation and result in RLS.
You might consider tocotrienol supplementation (a mix of different types of vitamin e) as that would improve your circulation. You mentioned wanting to get into a 'boiling bath'...well, that implies circulation problems.
Who knows, you may just be able to get off of all your drugs!
I don't eat any sugar and haven't for over 3 years. I stay clear of all nightshades which are inflammatory and am on the FODMAP diet to see what foods might be causing problems. The hot bath is simply one way I use to 'shock' my legs in to submission, some people find cold baths helps. My circulation isn't a problem- I have my blood flow checking in my feet every year. There are so many aspects to RLS that it can be many or none or all of the aspects that are a problem. I have had my bloods checked and my ferritin level is currently at 78, and I'm having another blood test next week. I'm also going to a hematologist on Monday as my GP would be happy to do an iron infusion if I was anaemic but isn't prepared to do one for my ferritin levels which we both agree should be over 100. I understand his reasoning. The hematologist will be 'covered' if anything happens whereas the doctor doesn't feel he would be given it's a less known form of treatment.
I've never heard of dysbiosis and just looked it up. I have none of the symptoms that it mentions. I wish it was as easy as an infection! IF only. Thank you for raising these issues as it's always useful to look at other causes for RL.
Do you have RL? and if so what caused yours and what treatment have you tried and found successful?
I'm still sorting mine out, but the doc says there is at least a partial connection to a bacterial overgrowth in my small intestine, and also elevated ammonia as a result of that infection, so I'm trying lactulose. But it also comes and goes, gets very bad on some days, then goes away almost completely -- so it seems to make a difference what I eat/don't eat, and what sorts of supplements I'm testing out.
As I'm sure you know, it can become hellish. I hang on though, because I've had it in the past off and on, and it's gone away for years, so I'm sure it will again. Just want to make sure if I can, that I know WHY it went away, so that I can keep it that way.
Good luck with that!!! It's a fickle monster that we have and often makes no sense at all. It's great if you can manage it with diet and natural things alone. Wish I could, and I'm still trying all sorts of things diet wise and need to look into SIBO which you describe. There seems to be evidence that it has a bearing on RL. The FODMAP diet should help with that and I certainly am willing to try anything to get control of my RL. Good luck to you.
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