I am asking for help for my mum as she is partially sighted and has never used a computer. She is nearly 83 and has had RLS for about 8 year. We have tried everything. I have searched every website over the years. I am sure I know more about this than our doctor. She will eventually collapse from exhaustion and end up in hospital and they will have no answers. She has a crumbling lower spine and the constant walking is making it worse. She is on morphine patches for the pain. She has just started a low dose of Pramipexole and we have cut her anti depressants down to a low dose. We tried Roprinerole. that was good for a while then the augmentation set in. Went onto Rotigotine patches. OK for 6 mths then all the side effects started badly. Mum tops up the Prami with Roprinarole. Is that a bad thing? she tries not to take them but gets so desperate. She can take 3 Roprin a day and has tried spreading them out. Is it better to take 3 together? Any help much appreciated.
What do you do when you have been thr... - Restless Legs Syn...
What do you do when you have been through every drug on the list? Everything works for a while then stops or makes things worse Desperate.
Hi, so sorry to hear of your mum's distress... I am surprised the morphine patches are not helping, as pain killers can give alot of relief from RLS, usually. Can you tell us what the anti-depressant is called, anti-d's can make RLS alot worse for most people. When was the last time she took the Ropinerole before that was stopped.... A period of not taking the Ropinerole can for some reset it and it can work again. What is the dosage of the Prami and the Ropinerole... sorry for so many questions but it can help if we know more. Another med to try is Gabapentin, that can be taken with the Prami or the Ropinerole.
Hi and thanks for your reply. The anti-d is Amitripyline was on 50g but got it reduced to 25g. The Roprinirole is 250 microgrammes x3 at night. The Prami. is 0.088 mg. We stopped the Roprinirole for a year and had the Rotigotine patches but they started giving terrible skin reaction and because she is Diabetic she is prone to ulcers so we had to stop it, it was no longer effective anyway. Gabapentin was one of the first drugs tried so long ago I do not remember what effect they had but as we stopped them they could not have worked. She is on 25+12 mg morphine patches every 3 days. Mum has tried tamazipam and others ending in 'pam' I call them the zombie drugs. Had a terrible effect no relief to the legs and became dangerous with her walking around like a zombie as she is partially sighted. Fell over twice. The Prami is such a low dose because the doctor was worried about Kidney damage. Thanks again.
Hi so sorry to hear of your mum's problem. As far as I am aware Amitryptiline is one of anti-D's that can make RLS worse. Has she seen a specialist neurologist for her RLS?
Yes I believe so. I will try to get these stopped I think she is on a very low dose now anyway.
The anti-d MIGHT be making things worse, is your mum taking it for depression...just wondering if she can wean right off it to see if the RLS improves some what. The prami is the starting dose so yes very low. So, is the Ropinerole working or not without the Prami. Its unusual to take two dopamine agonists together. All the meds ending with pam are usually just to help for sleep rather than helping the RLS, i agree they can make you feel like a zombie all day.. As for when to take the 3 Ropinerole, that can be played with, maybe all together in the evening, or space them out during the afternoon and evening. Its one of those things on working out what suits the person as when they get taken. As for the morphine patches, i dont know if that dose is high or not so cant advise on whether that can go higher. Has your mum had a ferritin level test, its how your iron is stored, ferritin level here in the UK, should read 50-70 for RLSers. Lower than that number and some people benefit from iron pills. If your mum hasnt had that done, it might be worth asking her doctor about that. Its not the answer for everyone, some the iron pills do not help in any way, some find the RLS symptoms reduce.
Reading all of your great advise in this forum I think our next move will be try to get the Anti-d stopped (no not taking for depression) and possibly try to get the Morphine dose increased. Then see if we can get referred to a specialist neurologist. Mum has had the Ferritin test done twice and always OK. She did take iron supplements for a while but made her very constipated. Perhaps we can try a low dose again. Before mum got the RLS we had no idea this terrible disease existed. Its about time it was taken as seriously as other diseases if it actually caused deaths then it would be. Just when you think you have run out of options you guys give us some hope. Thanks so much.
If your mum's ferritin level was in the range for RLSers, then taking iron wouldnt be helpful. Yes, they do cause constipation, usually doctors can give senna to help with that problem. Good luck with everything else you are going to try and do, i hope it helps your poor mum... 
I was reading some prior posts and saw
that taking bio-available iron can make the difference if taken with full glass of water on an empty stomach. Whitetea suggested it.
As she already has morphine patches I recommend you to highen the dose on them and cut all the other drugs out. Right dose of Morphine works very well on RLS.
Thanks for coming back. I will certainly look into the Morphine dose.
The morphine (fentanyl) patches I had, before my infusionpump, were avaliable up to 100 mg. I only had a 12 mg patch but I took up to 70 mg morphine pills at the same time before I reached a painless level.
And if your mother has had the same dose for a while she'll need to highen it.
Hi sorry your mum is suffering. I have had rls for 30yrs so has my mum and my daughter just srarted with it.Not known of anyone starting with it so late in life without some underlying cause. I take uo to 4x0,088 pram a night but can sometimes manage on 1.I stopped taking that antidepressant and my symptoms got slightly better.The things I find help are a bath containing epsom salts, magnesium tablets, magnesium oil rubbed on legs.hylands rls tablets, half a dissolvable asprin at bedtime, wearing socks in bed, elasticated bandages on legs.your mum must sleep when she can regardless of its day or night.I find my legs much better in mornings so I go to sleep very late_around 3 oclock and get up late.Stopping the pram suddenly will make legs 10 times worse people have even resorted to rehab to be weaned so that is a no no! Strong pain meds seem to be the thing that helps most people so yes try and get it increased.I would stop the rop and up the prami but it will still neef to be increased in time.I hope you get somewhere with the neuro I have never seen one so don't know what to expect there.My heart goes out to your mum having to cope at her age I am much younger but it still floors me at times.Please let us know how she goes on and she is lucky to have you to support her.No one understands the impact this condition has on a persons life, My thoughts and best wishes are with you.x
The combined knowledge and experience of the RLS suffers on this forum is amazing and comforting to know that you are all out there with your support. I have told mum about your comments and read them out to her. We will try many of your suggestions and see how it goes. We felt we had reached the end of the line for treatment but know we know there are many more options. Thanks to you all.
Amitriptyline is the very worst drug to use if you have RLS. Even at low doses it is the drug from hell!
Annieapple,- why do you think that? I'm just curious. I was considering using that drug.
Jaynielynne, its well known to most of us that Amitriptyline is a no no for people with RLS, as well as most of the other anti-depressants are not good for RLSers, they will make the RLS worse in most cases. There are exceptions to the rule, as in any medication, when someone can find it helps rather than hinder.
I skipped over that on rlshelp. Thank you. Both Annie and Elisse. Back to the drawing board for me.
on the treatment page under Drugs and Foods to Avoid. And DO ignore the blood pressure med on the treatment page. just talked with Dr. Buchfuhrer..." It is old, not accurate, and I never prescribes BP meds for my RLS patients." And all he does is RLS. 
Thank you for discussing this. I was thinking about going on BP medicine to get things under control..I am glad to know that Nighdancder
When you say that ferritin was ok did you get the actual level cos doctors often think that around 20 is ok, but this is an ok level if you don't have RLS . ??? We need to be up nearer 100..
Your poor Mum! I have reported recently that i stopped my Ropinirole prescription (1mg per day) and took 50mg of Tramadol about 4 hours before bedtime for about two weeks and then went back to Ropinirole which has worked for me but of course we are all different!
Much sympathy.I am in my 60s (and male!), have suffered most of my life, and have been contemplating a similar fate myself. Has she tried extended-release Ropinirole? I currently take that in the evening, and boost it with 0.5mgm of the normal stuff at lunchtime. So far, that works 75% of the time.(But for how long?)
The Mother has diabetes and that is a underlying condition for RLS, so she has Secondary RLS.
Yes Type 2
Pregabalin or lyrica is supposed to work better than pramipexole
according to our recent newspaper. =) Gabapentin can
make people gain weight fast. That's not good if she has diabetes.
I am on high doses of Gabapentin 3x a day & have not gained any weight. I took Ropinerole for years as it worked very well for me but then I experienced severe augmentation. I was then put on on Amitryptiline by my GP. One small dose had me going crazy ALL night & all of the next day. Far worse than anything else ever. I will never take another one ever!!! At that point I asked my GP to refer me to a neurologist. She tested me thoroughly to rule out anything else other than RLS & she LISTENED to me. I was put on very low doses of Gabapentin which I was able to increase myself every 3 days until I got relief. I take lower doses in the day & a much higher dose at night.
I do have treats over the weekend but Mon to Friday I eat loads of fresh veg & small quantities of fruit. I only have white potatoes on a Sunday which I roast in a good oil like Grapeseed. During the week I eat sweet potato & whole grain rice. I eat as little wheat as possible but do have a slice of toast once or twice a week. I try to use bread with mixed grains.
Lots of organic plain BIO yoghurt for breakfast keeps my tummy working well (constipation can set off RLS)
I do not add sugar to anything. For apple crumbles & porridge etc I I use Stevia or Xylitol.
I eat good quality fish & chicken & limit red meat to twice a week. I try to have my main meal midday and a light meal at night but this is not always possible. If I have the main meal at night I have it as early as possible.
I do try to drink MAINLY WATER ( hot or cold with added lemon slices) & no caffeine teas & decaffeinated coffee.
I also try to walk 20 mins a day and much longer twice a week. Other than that I find gardening therapeutic & relaxing & stretches & hot baths with Epsom salts very helpful.
Hope this saga is useful to someone out there!
Look for a prevention instead of a cure... get the doc to do bloods and make sure her iron.levels are ok. Its a long shot but worth a go. All.my doctors have treated rls like it dosnt matter because it isnt dangerous and it dosnt causenpain.. but it really matters. Ive gone weeks before now without sleep and at that.point it matters.more than anything on earth. Before i got prami i fou d the best thing was a sleeping pill that knocked me out before i had time for the rls to kick in. A high dose of zolpidem or zopiclone. Overdose on B vitamins, whatnyour body dosntnusenitnpasses through
Hi,
Try two things if you can.
First of all see if you can get her some marijuana . Yes, weed, or marinol which is weed in a pill form. It works! You could make her some brownies or better to melt some butter and put it in that. ( It needs fat to release the important components. ) She can put it on her bread or crackers. Take however much you have and figure out how many doses you can get from it. Start small then give a little more until it stops it. Then you will know how much she needs. Tell her what you are giving her so she isn't surprised as to the effects. If she can get the pills prescribed from her Dr they come in 2.5, 5 and 10 mg. Get at least the 5 mg. I tried the 2.5 and it wasn't enough. They are very expensive so I do hope she has good insurance. I would take them at night. sleep well and wake up fine and ready for work.
Second of all, see if she is bothered by nightshades. I am! I did an elimination diet and found the RLS gets really nasty when I eat tomato, potato, any type of red or green pepper, chili, jalipano, paprika, eggplant and such. I also cannot drink apple juice or beets because they contain the same offending chemical which is solanine. Sweet potatoes are ok because they are in a different family. Many packages foods have tomato powder or potato powder, or anything nacho has chili or some type of peppers in it. So Read labels! Lots of juices may say they are one kind but often contain apple juice. It's worth a try!
I do hope I am of help!
Hi how is your mum doing? Any improvement?
Hi. and many thanks for your concern. Mum has had a very good week thanks. We have stopped the Amitriptyline and increased her Fentynal patches by 12.5 mg. We stopped the Roprinarole patches a couple of weeks ago. So far so good. We know that this is never over as we have been there many times before. Change drugs, 2 good weeks then "bam" back it comes. Its as if her body is sooo determined to counteract whatever we do. There must be an awarding winning study for some clever researcher out there to work out how this happens? I have not added any more iron tabs yet as I believe in "if it ain't broke don't fix it". Thanks again. (thinking of asking the doc for some marijuana on the NHS not for mum but for me Ha!!)
Hi so pleased your mum is getting some relief long may it last!
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