How can I help my Mum?

[srewolfina]

My Mum is 88 years old and has suffered with RLS for about 12 months now. I suffer with RLS myself, but do only get symptoms that make me have to move my legs - usually when I am really tired. Mum's legs kick out, about every 20 seconds, and the frequency of this varies from day to day. Mum has been taking Ropinorole for about 10 months but she has got worse and her meds have been changed to Pramipexole which don't seem to be having any further effect at all. I have seen a lot of blogs that say that a hot bath is effective but unfortunately I can't get Mum in a bath. Any suggestions for other things that she could do that may relieve these symptoms?? The legs kick and jerk regardless of whether she is sitting, laying or standing so she doesn't even get any relief from walking around any more. I am at the end of my tether with it really, as her carer, as I can't do anything to ease this for her! It must be horrendous for her trying to live with it, she is a very independent woman usually and this is destroying her life and the things that she is able to do for herself. We keep going back to the doctors but onviously her symptoms are such that he just keeps saying we have to try different medications to get this sorted. Her sleep is of very poor quality and most nights I get up and find her sitting on the side of the bed, not being able to lay down and sleep. Any suggestions would be gratefully receved - just want to be able to help her somehow!

[Kolla]

Dearest

You have a heavy burden to carry. The medicine first. I have been through most of the rls medicine from quinine to pramiplexol or the cheaper version, sofril. The medicine we get are much the same as persons with Parkinson's get. My experience of the medicine is that they work in the beginning they start loosing their effect. Oh I have all the time since I got my diagnosis I have taken before bed 0.5mg x2. Rivotril, which is really used for angst -sorry my English is not perfect. Rivotril has a relaxing effect.

Has your mother been reumatica of any kind? I would check that in cooperation with your/her GP.

I have heard this about hot baths, has not done me any good. There is also the theory of hot/cold water. There is a system like that where I go for water gymnastics that helps. I know of people that sit on a chair with two buckets of water in front of them, one cold and the other with hot water. They put their feet in the buckets some minutes in cold water, then in the hot. I have never tried this.

I think it would do her good if she could take a short walk twice a day, if she can go outside.

I think it has the same effect if she took a walk inside the house for 10 minutes every hour or every other hour I have done that, it helped my rls.

Then there is the water. When we get older we have to be careful to drink enough water.

I try to drink 1 1/2 liter daily. And to eat water as someone put it. Tomatoes,melons, cucumbers.

Not to forget sleeping difficulties. I find that the most boring part of rls. I try to go to bed between 23:00 and midnight usually I wake up between 02:00 and 05:00 wide awake.

I spend the time walking to and fro, then I sit in my good chair and listen to audiobooks, sometimes I fall asleep in my chair. Before I started making bread and jam. That is not a good idea. Then I knit simple things.

I find it helps to do something to do keep my mind off the rls

Please take contact again if this is of any use to you

Hope everything works out for you and your mother

Kolla

[Hidden in reply to Kolla]

Kolla, I cook full meals when I can't sleep or my legs act up.

Don't feel bad about baking bread except if the smells wake

the household.

[Kolla in reply to Hidden]

Yikes

Hi there soul mate, glad to know that there are others that do useful things during the night.

No I do no feel bad about my baking and jam/marmalade making. It is just I overdo things and become too tiered. I have some other aches and pains that I have to take into consideration. I have 5 or 6 diagnosis that can be found in ICD-10.

I make good bread and my citrus marmalade is good as well.

Enjoy your coffee

Kolla

[Hidden]

I left a comment earlier but it didnt go through...So i will try again.

It might be that the dopamine agonist meds. do not work well for your mum. So as her doctor has said other medication has to be tried, most of us seem to be at our doctors, saying....what you gave me isnt working, so can i have something else to try.

Maybe a hot water bottle would help, or a heat pad, some like the heat for their RLS some prefer cold. I use a standing fan to blow on my legs and feet all night, that only works if the RLS is not raging. Most of us on a bad night like your mum, we pace up and down to get relief, sometimes after we can get back to sleep. Distraction of some sort can help, i use soft music, using a cd player.

But, i think a return visit to her doctor is needed if the pramipexole isnt working.

Hope this helps.

[nightdancer]

every med does not work for every person. This calss of meds that she is taking may not be the one for her. If she is kicking that much, time to try another one. The dopamine agoanists are not working for her, obviously. rlshelp.org, go to the treatment page, read that and also scroll down to see "Drugs and foods to avoid". I caregive my mother, who is 84, and thankfuly she has no RLS, but I make up for it, and so so my sisters and nieces. She or my father passed the gene down to us youner generations, for sure. You can carry the gene, and not have RLS symptoms, but you have the capbility of passing it on. The forst gene was discvoered in 2007, and several mutations of it have been found since. This is a huge clue to help solving the RLS problem, but will still take years. There is no cure right now, like there isn't for diabetes, Parkinson's. etc. so, we have to cope however, and thatv means telling your Mum's doctor that her meds are NOT working. They do not work for everyone, including me. Cannot take that class of meds at all.

[peterk]

Hello Srewofina

So sorry to hear about your mum's distressing jerks. These are often called "crazy legs" or periodic limb movement. Fisirstly it's great that you have a supportive doctor who is ready to try different medications. Anti eplipeptic medication I have read is useful for these periodic limb movements and medications include gabapentic or neurontin, and there is a stronger version called pregabalin. These can help many people. I am 48 and my RLS I have had since 2001. It hasn't responded to the usual agents and I get these too which is disturbing. Not as bad as your poor mum but it tends to increase with age. I am on what clonazepam which is another name for clonazepam and oxycontin but the later would not be good for an elderly lady as both these meds can cause respiratory depression. I would ask her doctor to explore the anti epileptic medications. After all they are used to treat seizures. I find that my RLS gets so bad that I can't get any distraction from it as it is rife in my feet. Hope this helps with the other suggestions above. Peter K

[Tiredparent Restless Leg Syndrome]

Has your mother tried the Rotigotine patches? They have made a massive difference to me. I am still on a low dose of Gabapentin and Pramipexole. When I suffered from augmentation (the medication became less effective over time), and started the patches, the difference was amazing. The patches last approx 24hours. Doctors are sometimes reluctant to prescribe them as they are expensive for the surgeries to pay for but in the case of your mother, there is clearly a very strong case for needing them. Best of luck.

[Pete-1]

I notice that Kola says that Pramipexole has been tried and found wanting.

Now, my main problem is Parkinson's and I take Pramipexole to treat that. But I do get a bit of RLS and when I'm not taking the Pramipexole the RLS becomes bad enough to prevent sleep. When taken for PD the Pramipexole is taken in much higher doses.

So all I'm suggesting is that your mum might not have had a strong enough dose of the Pramipexole?