Help!!!
Posted , 9 users are following.
Hello fellow sufferers!!
I am really at my wits end with this I can’t cope no more.
I take ropinorole and have done for a while however it’s augamented and I’m really struggling.
It’s making me cry and get angry where I want to cause pain to myself.
Please can somebody give me some advice? This is ruining my life 😢
Thank you
Lucy
0 likes, 15 replies
becca20505 lucy90980
Posted
lucy90980 becca20505
Posted
Thank you!!
It’s def worth a try so going to give acupuncture a go.
Lucy x
raymond89945 lucy90980
Posted
Lucy, I was in your shoes, or close to it. I was taking more than the max dose of Ropinorole plus hydrocodone and still have severe episodes of RLS. 2 years ago I saw Dr John Winkelman at Mass General Hospital in Boston. He's the foremost expert in RLS in New England. He prescribed 2mg Ropinirole with 5mg Methadone 1x daily. My RLS has virtually disappeared. I still get occasional minor leg jumps for a short time but for I'm 95% improved. I told my local RLS MD about it and he has prescribed Methadone for some of his other RLS patients. In all cases it has worked for them. I strongly suggest that you tell the MD that treats you to research the work of Dr. Winkelman for the treatment of RLS. There's not much in the medical literature about the use of Methadone to treat RLS which is why it's not widely used. But for me and those other patients it's a miracle worker. Good luck and I hope you follow through. And don't worry about becoming addicted to Methadone, 5mg is an extremely small dose and totally out of your body in 8 to 64 hours.
lucy90980 raymond89945
Posted
Thanks for replying.
I am going to get an app back with the neurologist and Beg for help.
It really is ruining my life.
Lucy x
Marina_Dee lucy90980
Posted
lucy90980 Marina_Dee
Posted
Thank you for replying.
I work full time so on my feet all day long I very rarely sit down and when I do I can’t its so unbearable.
Lucy x
raymond89945 lucy90980
Posted
Lucy, RLS is caused by a deficiency of dopamine re-uptake in the brain. In other words it's a chemical imbalance in your brain. Ropinorole (a Dopamine agonists) restores that imbalance and allows the brain to better re-uptake dopamine to some degree but over time the body develops a tolerance for Ropinorole and it becomes less effective. I'm very aware of acupuncture, soap remedies, lower buttock pressure, etc., etc., For the most part they do not work, especially in severe cases like yours. The physiological causes of RLS are well understood. The mechanisms are somewhat similar to Parkinson's Disease but it is NOT, repeat NOT, Parkinson's Disease. There is no known cure for RLS and symptoms increase with age. Symptoms can be triggered by iron deficiency, sleep deprivation, alcohol, caffeine, nicotine, and diabetes. There are a lot of "promised" remedies, pills, capsules, liquids, that are advertised to cure RLS. These remedies are more to make money for the manufacturer than to cure RLS. There are only a few proven remedies that will reduce symptoms. They are:
Dopamine agonists: Ropinorole, Mirapex are most widely used. Next are Benzodiazepines, Opiates, and Alpha2 agonists. As I stated in a previous post I have had excellent results with 2mg Ropinorole and 5mg Methadone. I can understand why you want to try natural remedies but slow release iron pills is the only one I know of that actually works. A doctor is prescribing your Ropinorole so either ask him/her for advice or see a specialist in RLS.
lucy90980 raymond89945
Posted
But surely the same thing will happen to you in time as your taking ropinorole and it will eventually argumentate and 2mg won’t be enough??
I am not against and drug I just feel I need to get off this as it’s making my symptoms worse than they ever were ( augamentation)
I will mention what you said though, I’m not even 40 so if it gets worse I’m dreading being 50
I never drank Diet Coke yesterday and although I took the meds I was so much better.
I’m basically up for trying anything
Thanks ray x
becca20505 lucy90980
Posted
Have u considered accupuncture?
lucy90980 becca20505
Posted
I have decided the last few days that when I drink Diet Coke it’s so much worse.
I am
Addicted to it tho
becca20505 lucy90980
Posted
lucy90980 becca20505
Posted
Thank you so much for all your advice
Lucy x
barney34567 lucy90980
Posted
I'll add my 2 cents.
I suffer insomnia and none of the benzodiazapines worked.
Once I thought I had RLS, saw my GP/PCP and asked for what I read works for RLS: LYRICA
I take 75mg 30 mins before bedtime and it helps a lot.
*BUT if you opt for LYRICA, you must not take it with ropinorole *
Guest lucy90980
Posted
Hi tracy,
I know how you feel, I h7ave had many sleepless nights due to rls, was getting desperate. Did not want to use medications due to side effects. So during those sleepless nights I scoured the internet for some relief. I stumbled across a site for essential oils. What I found were recipes for rls relief so I could sleep, I thought what do I have to lose. Picked up the oils at a store that does the mixing for me, Escents Aromatherapy Canada. Along with 300mg Calcium citrate, 1-1 magnesium.
Grape seed oil 100ml, lavender 16 drops, cypress 16 drops, lemon 12 drops, rosemary 12 drops, and juniper berry 8 drops.
Massaged oil into my leg and wore a heating pad for 30 min. In the evening. Massaged oil once again into my leg just before bedtime and took one pill of the calcium citrate.
I slept like a baby no leg activity or pain at all during the night, I was so ecstatic I did the happy dance, I will continue doing this nightly because the oils are not harmful to me and the calcium/magnesium are also part of my new healthy plan to sleep better.
Had to share and hoping this works for you as well, too all a good sleep
tessa18 lucy90980
Posted
I've suffered from RLS for 30 years. I am now 70. I also have Fibromyalgia and I just thought that somehow the 2 might have a connection as with other Fibromyalgic pairings, brain fog and severe IBS ,inter alia, in my case particularly.
These are my RLS observations. As symptoms are worse when I'm not in my own bed, I have come to the conclusion that too much sitting when away and in company are a factor, as normally, I'm up and doing most of the time at home. When it started I tracked it to too much time spent driving....kids taxi service etc. I tried everything with no success until one day I reckoned that the second main symptom was hot buzzing legs. Try this.
With a very cold slightly wet flannel, slowly and firmly wipe down your leg from above the knee to the ankle and back.
Then several times right to left back of knee and several times circle the knee cap, refreshing the flannel as necessary.
This often works first time but occasionally needs repeating once or twice if you fail to get back to sleep. So simple I could hardly believe it. And of course, there are those that don't.
Gook luck my friends
Tessa