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

15 Replies

  • Posted

    Lucy, this worked for me. Several things natural may help. Apple cider vinegar put some on paper towel and rub on.its immediate, any bar of soap rub it on in the bat of soap and acv are minerals that open up blood vessels to allow oxygen thru. Lastly accupuncture, your body has a cy le of energy and with pain, stress , that cycle of energy gets slowed down,, accup. Jump starts it again. Lastly. Essential oil person .ask for massage oil then have them add circulation minerals.
    • Posted

      Hi Becca

      Thank you!!

      It’s def worth a try so going to give acupuncture a go. 

      Lucy x

  • 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.

    • Posted

      Hi ray

      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

  • Posted

    Lucy, I used to suffer with RLS quite badly when I was a child at school. When I started work it disappeared and about 5 years ago it came back. I tried to think of the common factors and I believe it is caused by sitting for long periods. At school I was sitting at a desk for long periods,and about 5 years ago I started sitting again for long periods. I decided to make sure I didnt sit for too long and the RLS has disappeared. My theory is that it is something to do with continued pressure on the nerves in the lower buttocks.     I may be quite wrong of course,but as RLS is a puzzle to many clinicians its worth consideration. It certainly has helped me.

     

    • Posted

      Hi marina

      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

    • 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.

    • Posted

      Jeeeez Ray you really do know your stuff eh!  

      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 sad 

      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

  • Posted

    Lucy,

    Have u considered accupuncture?

    • Posted

      I didn’t until you mentioned it so going to give it ago. Have you tried it? 

      I have decided the last few days that when I drink Diet Coke it’s so much worse.

      I am

      Addicted to it tho sad 

  • Posted

    Yes i still do accup. Accupuncturist told me your body has a cycle of energy and stress, pains, flu, etc slow this down and can become stagnant. Accup restarts the cycle of energy,i no longer have migraines that i had off/ on since childhood. I found out the hard that aspartame/sulcraose can give u migraines. I love diet coke and soda, once in a while thing. Heres the weird thing. I do believe sitting and standing for long period of times affects it. Accup can address alit of things. Plus, fyi. They do an allergy test which helps you to know how effective natural meds r for you, etc. Last thing, have u heard of kinesologist? Kinesoligist that i went to worked in health food store she had 30 yrs of experience plus a botanist charged 60.00 for 1 hr. She said . When u find one there 250.00 forc2 hrs. Short version. She used her hands and told me my liver wasnt functioning at its peak, liver gets the weight of your anger, thyroid gets the weight of sadness/ grief and other maj. Organs are affected by other emotions. She went and got 5 natural supplements and by me holding one her doing a count, she could tell me what supplement was most effective for me. Its fascinating.
    • Posted

      Wow I really need to get to the bottom of why I suffer so so bad and try to find some natural remedies so I will def be looking in to both those options. 

      Thank you so much for all your advice smile

      Lucy x

    • 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 *

  • 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

  • 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

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