Please Help !!!!!

Hi ,

I'm new to forums so not sure how they work so please bear with me.

This is my last hope as I am so desperate. Last night was the 4th sleepless night due to RLS, iam at my wits end. Iam on Rotigotine patch 3mg and it doesn't seem to be doing anything anymore I have been on it for about 3 years, The trouble is iam a diabetic also , so am on meds for that as well as Aspirin and Matrifen pain patches (iam a wreck) no-one seems to be listening to me and its driving me insane. My Gp doesn't seem to understand and my neurologist has just said the patch im on is the strongest I can be on.....

I was diagnosed about 5 years ago as my Gp thought I had sleep apnea, but was diagnosed with RLS,after I had a sleep study test done, I have been on Roprinrole, which didn't help they changed it then to the lower dose Rotigotine patch.

So now my Gp has put me on Statins again because of cholestorol, and because i'm not sleeping blood pressure high , I can't seem to win.

I have tried many different things, massage , hot and cold baths ,showers , excercise even someone suggested a bar of soap in the bed, but I will try anything.

My quality of life at the moment can only drive short distances and cant be a passenger. Aaarrrgggghhhh

I have been reading the posts and will some of the suggestions.

Why oh Why don't Gps and Consultants listen to you instead of what they want to hear/understand.

I do hope this makes sense sorry for going on , I just need some help.

Thank you

P.s The Rotigotine patches do not stick very well and I have to use Micropore as told to by a pharmacist.

Thank you again

45 Replies

oldestnewest
  • Ger- thats an awful situation to be in.

    I have to rush off - but very quickly- augmentation comes to mind- you can google it or search here ( top of page -more- drop down tag and search.)

    Sorry can't stay longer.

    Good luck.

  • Thank you Madlegs will look it up now..

  • Hi Ger

    If you do not know much about Augmentation this link may help:

    sleepreviewmag.com/2015/02/...

  • Will have a look now Kaarina Thank you

  • Yep, eventually the dopamine meds, whether a patch form or in pill form, can stop working for us altogether and actually make things worse. 3 yrs is about average on the patch you are on. So, the pain patch should be helping SOME, but if you ARE augmenting, and it sounds as if you are, you do need to read up on it, and there are other meds to be used for RLS also, as in different classes of meds other than the dopamine ones that you mentioned you are on and have been on. Ropinerole is the same med as the Ritigotine patch, just in pill form. So, there are other classes of meds to try, too.

  • Hi again, Ger,

    Have you had your ferritin levels checked?

    I am sure you are aware that alcohol, caffeine, chocolate, dairy food can all be triggers for many sufferers.

  • No I haven't had it checked ,but on reading alot of the posts it mentions this . Going to see Diabetic consultant tomorrow, and will mention about the Ferritin test. I am going to tell every cons / doctor I see now,

    Thank you

  • For RLS sufferers the level should be higher than the norm - ie 75 - 100 if I remember rightly . ;)

  • That is correct, Kaarina. For "normal" people with NO RLS, they say the "normal" range is 12-15. For us with RLS, they have put it up to 70-100, now, and may even be going higher now. I got mine way up there with iron infusions, and it did not help my RLS, but it does help some people, and is the only test they can give us, besides a sleep study test. :)

  • I had the iron infusion on March 10 and so far nothing has improved.

  • The RLS specialist that i see said it must be above 100. Mine was 70 and he sent me for an iron infusion.

  • See if you can locate my post about iron about a week ago.

  • I don't dirnk alcohol or coffee, very rarely drink tea, and being diabetic have to be careful with sugary foods. maybe it s the cheese, will have to try and cut that out to see. willing to try anything and everything.

    Thank you

  • Some people have no food triggers, like me, and some people do. It is all a process of elimination. :)

  • Exactly- my ferritin was very low and Rx iron (awful effects on my g.i. tract!) helped a lot, but it took weeks to slowly build up my ferritin.

  • Thanks Bob, I feel better just by knowing there are people who understand. Going to make sure I have a Ferratin test,

  • Ger,

    I am not sure if you are aware that a number of medications can make RLS worse:

    rls-uk.org/treatment/

  • have just looked at the rls-uk.org/treatment/ site thank you . Definetly going to sit down with diabetic cons tomorrow and try to see if any of the meds I am on is making RLS worse.

    Really am appreciating all the help Thank you .

  • mate i,ve been where you are now, and with the help of people on here and there advice i,ve come off dopamine meds was not easy it was bloody awful but did it,now on pregabalin plus codeine phosphate and i,m in a better place all together please listen the good folk on here are brilliant and have helped me no end and they were always there for me and i never felt alone fantastic people i,m proof of that good luck please remember you are not alone

  • Hi Nick

    Thank you for that, I feel better just knowing that there are people on here in the same boat that are willing to help me and everyone else , I can't thank you all enough.

  • Hi Ger, so sorry that you are having such a difficult time. You express very eloquently the frustrations that the majority of rls sufferers experience in relation to their health care providers. What most of us end up doing is educating ourselves to the point of being very knowledgeable and then have to sort-of dumb down again to try and bring our doctors along with us without alienating them by appearing to teach them their job.

    3mg is the top dose recommended for rotigotine and, although it is probably difficult for you to appreciate this, given the torture you are going through, it is all for the best that your GP will not increase it. You have almost certainly augmented on the patch - as you will probably realise if you have had time to research it - and increasing the dose will only exacerbate the problem.

    If you have augmented, you are in the unenviable position of having to come off the patches and find a new treatment. The withdrawal process (from rotigotine - neupro - or any other dopamine agonist) is very difficult BUT it is well worthwhile. Once augmentation occurs, the dopamine agonist is effectively feeding the condition and making your symptoms worse. Once you have washed the dopamine agonist out of your system, you may find that your symptoms settle down and are less severe than at present. With luck, you will fall into the majority category of rls sufferers who benefit greatly by bringing their serum ferritin levels up to over 100.

    If, as seems very likely, you have augmented, you are at the beginning of a journey of discovery about your rls - first having to go through the withdrawal from neupro and then finding your base level of symptoms and working out how to treat them. I would suggest reading widely through this and other rls fora, also look at the patients letters and answers of Dr. Mark Buchfuhrer on rlshelp.org and the Johns Hopkins Medicine website, rls section. These are the current world leaders in the treatment of rls.

    If you have to come off neupro, you need to work out how you will manage it - many people use strong pain relievers (opioids) for this and others go cold-turkey. In the meantime you should get a blood test to check your serum ferritin levels - it is important to ask for the exact figure - every time I phone for the results of a test I am told that they are 'normal' and I have to ask for the figure. 'Normal' for rls is very different from others. When I weaned off mirapexin (another dopamine agonist) last year, my level was 29 ('normal' according to my GP). It is over 80 now and my symptoms are dramatically better. I aim to get it well over 100.

    RLS through the night is nothing less than a torture. It is also a poorly understood condition and effective treatments are often elusive for one reason or another. However, Dr. Buchfuhrer maintains that for almost all rls sufferers there is an effective treatment which can be achieved (often through a process of trial and error) so as to enable the sufferer to live a normal life. Do not despair. Everyone on here totally understands what you are going through.

  • Thank you so much for this, I am really starting to understand. Imgoing to see my diabetic consultant tomorrow and my GP on Tuesday. I will request a ferritin test and explain If I come off of the patches i will need strong painkiller , the thing I have to be careful of is, im on Matrifen pain patches also as I have prolapsed discs. Plus insulin.

  • I suggest you search for FODMAP diet as a starting point to see if you can get off some of the drugs. Its working for me although I am still a work in progress but getting many nights sleep. This might be a double advantage to you because you will probably lose weight and every kilo you lose is golden if your a type 2 diabetic. If FODMAP doesn't work or only partially works then you might consider going on the low chemical diet BUT definately discuss this with your dietician Try to find a dietician who knows about diabetes and FODMAP. Get your dietician to read about the low chem diet on the Royal Prince Alfred Hospital web site. It works for some and you sound like you need something to work.

    Good Luck Ask me if you need any help with info about the diet.

  • Yes, you certainly do need to be careful. I don't know how the various meds interact. It is worth checking whether any of your meds fall into the category of those which are known to exacerbate rls. You could take a look at rls.org for this. I wish you the very best of luck with your diabetic consultant and your GP. Some people also notice a correlation between their vit D levels and rls symptoms so it might be worth getting this figure also. Still others swear by magnesium although there are also those who believe it exacerbates their symptoms. I find that a very hot bath with epsom salts can provide some relief.

  • Thank you again, At least now I can go to these consultations with the info that you all have given me, this makes me feel so much better. Lets hope I get some sleep tonight,

    Thank you

  • Hi Ger, welcome to the club nobody wants to have to belong to!

    You have had some excellent advice here from other members. Involuntarydancer has addressed everything.

    Only thing I would like to add is about your pain patch. It is not a name I am familiar with so I looked it up and now see it is another name for Fentanyl patch. This is a very powerful painkiller (I have been on it myself for back pain ) so it is highly unlikely that any doctor would prescribe any extra opiates to help you withdraw from the Ritigotine patch. You will need to withdraw very slowly from the Ritigotine patch maybe by half a patch every couple of weeks.

    Is it only the last 4 nights you have had big problems? Have you taken anythingnew even over the counter stuff like cold meds or antihistamines?

    Of all the Dopamine Agonists meds the Ritigotine patch is the one least likely to cause augmentation but it does still happen and this is quite likely to be the problem. Did you start low and have had to keep increasing over time? Do you find symptoms spreading into other body parts most commonly the arms?

    Your certainly not on your own with this now! Unfortunately even some Neurologists have no idea how to best treat RLS so every suffer needs a group like this. Learn as much as you can from reputable sites like rls-uk.org .

    Pipps x

  • Hi Pipps, Thank you for that.

    Yes Fentanyl is another name pain patch as like you Its my back crumbling and bulging discs. Before I was on the patch I was on Roprinerole then went on to Rotigotine 1.5mg then it went up to 3mg. also take paracetamol and co-codamol.

    what seems to happen I have 1 night where i keep waking every hour then for the next 2 to 3 nights I can't sleep at all, Then I sleep on and off for about 2 days then it all starts again. been like this for months.

    Thank you for your advice much appreciated

  • Ger,

    I strongly recommend you try the low fodmap diet. I've been doing it for about 3 weeks now. Right leg is easily 90% calm whilst left leg about 55-60%. It is usually a slow process. If it works for you, it will be tiny improvements every day like most people. If you are lucky, you may make large strides within days. It is completely different for everyone. This is the one I follow:

    ibsdiets.org/fodmap-diet/fo...

  • Oh my dear Ger59, i feel your despair, you need to request someone who knows more about your situation, you cant go on like that. I am sure that people here will give you advice and ask them to recommend someone for you to see

  • I know just how you feel it's worst thing ever I had many illnesses even cancer but RLS beats the lot nobody really listens or cares it's so hard yo explain as well as a retired nurse I talk to many Dr there is no one cure to fit us all I am many meds but I take Ametriptfldne /0mg it has helped big time demand GPlistens keep in touch love we all here for you

  • That should say 10mg of ametriptlene st night at least I get dome sleep

  • Hudson glad that the Amitriptyline is helping you but just wanted to add that for the vast majority of RLS sufferers it will make RLS much worse unfortunately so it is normally one to avoid.

    Pipps

  • I know how you feel ,restless are the worst ,I was put on some antidepressants and I also have fibromyalgia and lots of other things .What I'm meaning is that the Prozac made my legs impossible and I would have it in my body too.Check your Medbs see if any affect RLS .

    Are you working ,if you are that must be so hard .Look at the augmentation link that will help .I don't sleep much but I had to stop working because of health .Wish you all the best and welcome to the site .x

  • Hello matrix,

    I recommend you try the low fodmap diet. I've made this recommendation so many times I sound like a telemarketers. But seriously, it has been a game changer. Relief is starting to come, improvements are being made. It has been hard sticking to it, but I've learnt little tricks here and there. This is coming from someone that can barely cook anything, so if you can cook, it won't be too hard for you.

    Anyway here it is:

    ibsdiets.org/fodmap-diet/fo...

  • Thank you my friend will look into it tomorrow . Hope you are not in pain take care xx

  • Hi Matrix.

    Thank you for that, No I don't work I took ill health retirement as I was having alot of hassle in work . good job I did as I don't now how I would've coped.

  • I had to give my job up and I know how hard that can be ,but like you I am so glad now as life can be tough .Wishing wellness upon you my friend .x

  • So sorry to hear of your situation. I was on Ropinerol and augmented on a very low dose of just 0.5mg . After reading other peoples stories on here I turned down the offer from my GP to increase the amount and have come off it altogether, I now take Lyrica 150mg once a day at about 7pm with 1 x 50mg tab of Tramadol and I also take iron bisgycinate with orange juice about 30 mins before bedtime.

    All through December and the 1st half of January I was in your position regarding RLS. The new drug regime is helping now though and I have been sleeping as well as I have ever done. Lyrica does not help everyone but it does seem to be working for me. I does take a few weeks to kick in properly and I was taking 2 Tramadol pills to start with.

    Everyone on here was so helpful to me when I was struggling.

    I do not have other health issues at the moment so have less complications than you regarding what I can and can't take. I think Tramadol or a similar opiate type drug will be needed while you are coming off your patch. I don't think you can just stop overnight like I did as you are on a much higher dose and need to decrease the dose gradually .

    Some people struggle with Tramadol , it can make you feel sick and light headed. This does not last, you get used to it, or at least I did. Don't take it on an empty stomach as these side effects will be worse and If you are prescribed 100mg ask for 2 x 50mg tabs and take them an hour or so apart as this will minimise the side effects until you get used to them. They were an absolute life saver for me.

    I hope you have a productive appointment with your GP. The best advice I can give you is educated yourself on every aspect of this awful condition and go to your GP armed with all your information, Show him or her the articles already mentioned ( Dr. Mark Buchfuhrer) by others on augmentation and the list of other medications available for RLS . You will almost certainly know a lot more than any GP about your condition. Tell them what you would like to try and check it won't interact with any of your other meds. If your GP is not helpful see another one in your practise. Best of luck with it all and let us all know how you get on.

  • Hi mantel might I recommend taking the iron before the tramadol and only take the tramadol if u find that u need it? That's what I would do. How amazing would it be to be pain killer free?

  • I have tried that as I ran out of Tramadol and went 4 nights with just Lyrica and iron . I needed the Tramadol . I would love to be drug free and have tried to just take supplements in the past but after weeks of no sleep went back on Meds.

  • Hi Mantel

    Well for the past 4nightsI have slept like a baby,(maybe I shouldn't have said that, jinx myself) But I had 4 nights and days I didn't sleep, the next night i slept 3 hours and then 2 a couple of hours later. didn't sleep for another 5 days but during those last 5 days I came on here . I decided that I was going to try cold turkey. so I left both my pain patch off and the rotigotine patch....I thought things couldn't get any worse, well they did the pain was so bad after 3 days I started the pain patch again it took 24 hours to get back into my system amd that and co-codamol helped. I have since slept.

    I am now waiting on my blood test results , and have an appointment (thanks to my partner) with the neurologist in May. so I am going armed to the teeth with all the information that all the lovely people on here have given me. The neurologist secretary has suggested I print off everything that I have found out from here and discus it with him. which I am doing.

    Also The doctor had put me on statins again....even though I tell him I get really bad heads with them. so I have stopped them and was advised by a friend to start taking Benecol,,,so I have . so will see how things go.

    I Hope you are managing ok.

    Ger

  • Your not alone. My saga battling the health (non)care system trying to get help has been beyond madening, even insulting and borderline inhumane at times. I figured out early on that i knew volumes more about RLS through my own resesrch than the GP community because unless one has it, its not taken seriously. So, I would suggest researching it independently and recommend starting with Johns Hopkins Medical. They DO approach it with an understanding of its seriousness and have a great deal of information, studies, etc. available. AND they are a reputable source, so if your brazen like me (or just at the end of your rope, also like me), you could print out applicable data from their website to present to your GP. Sometimes the written word gets more results than the spoken word of the sleep deprived patient. Also, depending on what state you live in and the applicable laws, medical cannabis or the CBD derivative (no high, just relief for countless ailments/afflictions) might be something to look into. Ultimately, since there is no specific med for RLS, I've found through forums like this that most severe cases end up requiring some combination of meds vs a single med. Good luck, and hang in there. Again, your not alone.

  • I actually go to the doc at Hopkins.

  • glad things are looking more positive. Re: Benecol, you can buy the stuff that is in Benecol in tablet form. It works out less expensive and I think they are stronger too. I am not sure what country you are in, but in the UK they are easy to buy on line, Health Span is a company I have used in the past but there are many others. Just type plant stanols into your search engine

  • Thanks for that Mantel. Have taken your advice and got some Benecol but the yogurt to start with. see how that goes.

You may also like...